Colectomy with bag vs without. New, need opinions

[Ethel]

Hello!

I'm 40. I have recently survived colorectal cancer (radiation, then operation, then chemo). However, a colonoscopy has revealed that I have at least 100 polyps, and the subsequent blood test showed that I have FAP (familial adenomatous polyposis) - a genetic mutation that makes a person develop lots of polyps. For a while I hoped to be able to get rid of them by a series of colonoscopies, but the second colonoscopy done four months later (with a different GI because I've moved) has revealed some 200 polyps. So it now appears that colectomy is my only option.

To be honest, I dread the consequences of such an operation whether it's done with a colostomy (waste exits via bag attached to a stoma) or without one (the lower end of the upper intestine is attached to what's left of my rectum).

The problem with the latter approach is that for more than a year after the original operation (to remove the tumor), I had various problems with my bowels: it was hard to move them, and they happened 15 times a day by small amounts. Only very recently have I begun to feel almost normal. I was told by the doctors that having a colectomy in which the upper intestine is connected to the rectum would produce the same symptoms that I had had, but even worse.

The problem with the former approach is that I've read of lots of problems it causes too, including on this forum, such as having a constant urge to go to the bathroom, to the point of having to sit on warm pads; awakening repeatedly at night due to gas accumulations in the bag; poorly working filters; and leaks. I was told by the surgeon that I'll feel fine, and that they'll let me meet somebody who lives with colostomy now, but the fact that one person doesn't have problems doesn't mean that I won't, so I'm still very hesitant.

I've always been scared to do a colectomy, and I feel even more so now that I finally feel almost normal physically.

Could you, please, share your relevant experiences?

[jhocno197]

After the initial learning curve, my husband's colostomy has been pretty smooth sailing. They will occasionally fail, but this has been very rare, and the only time he has had major blowouts were during one period of a few days when he had C Diff, and one other weekend of extreme diarrhea. I would say it has actually been easier on him having the colostomy through this, as when he is sick, he doesn't have to go to the bathroom 50 times and end up with a raw rear end. He does occasionally pass mucus out of his rectum. He had a period of a month where he felt constant discomfort in his rear like he needed to have a bm but didn't, but that was due to where the tumor was pressing, not any other issues. He has had his since December 2014.

[MissMolly]

Ethel:
Come to the United Ostomy Association of America support forum and interact with individuals who have ostomies. I guarantee you that your fears of having an ostomy will be assuaged.

www.ostomy.org

I have had an ileostomy for 5 years. My ostomy was due to a severe perforation of my intestinal tract (think of a long unzipping of one's intestine) due to fragile tissue owing to use of corticosteroids. Mine was an emergency procedure.

That said, having an ostomy is simply no big deal. I adapted and adjusted to it quite easily.

Modern ostomy products are functionally quite advanced. There are oodles an oodles of different ostomy products to choose from. Key is in finding the pouching system that is the best fit for you as an individual. Every person has different skin characteristics and a unique abdominal topography, so finding an ostomy pouching system is an individual process. The members of the UOAA consist of both newbies and seasoned veterans - paying it forward, people helping people. Come on over to the UOAA, bring a blanket, sit around the virtual campfire that is the UOAA ostomy forum, and be among friends.

In my 5 years with an ostomy, I have had only a handful of "blow-outs." Most often a "blow-out" is also associated with eating a food that is a producer of gas (broccoli; cauliflower; a glass of beer). Having a sense of humor with an ostomy is a bonus. People with intact intestinal tracts get diarrhea. No different.

I will even go so far as to say that there are benefits to having an ostomy over an intact intestinal tract and defecating via an anus. A lot of living with an ostomy is having a positive orientation. I am no different of a person than before my ostomy. The only difference is that I share rental space on my abdomen with a stoma. My stoma is small, less than 1" in diameter and flush with my skin. It looks like a small shirt button. There is no "ick" factor, there is no "gross" factor. My stoma is actually quite cute.

Ostomy pouching products are discrete and low-profile. The pouches have elastic polymers. They do not rustle or make noise. The seal is 100% odor free and water impervious. The wafers are composed of hydorolloid polymers that seal in contact with body heat. Most wafers also have elastic polymers, allowing a dynamic wafer system that moves and conforms to your body as you move. I wear a small 5" mini-pouch. I rarely notice that I am even wearing an ostomy pouch.

I think semantics are also important when approaching life with an ostomy. Notice that I prefer to use the words ostomy pouching system. I think the word "bag" carries with it a negative connotation. Words matter.

Bottom Line: Do not be afraid of an ostomy. There is a good quality of life with an ostomy. Feel free to visit the UOAA web site. You'll be glad that you did.
- Karen -

[BeansMama]

I have had a colostomy since my first surgery. Once you get the hang of caring for the colostomy it really isn't bad. I have had very few incidents since figuring out what works for me. There are a variety of types and companies, all of which will send you samples to try.

I also recommend consulting with a WOCN, mine helped so much when I was having issues. If you get a chance to consult with one pre-op they will also determine the best placement for you.

Personally with that many polyps and the potential for them to become cancerous I would opt for the surgery. One more measure of safety in my opinion.

I will add you to my prayer list, hoping whatever decision you make will be the right one for you.

[Ethel]

Thank you so much for your replies!

I have now visited the UOAA website and read many threads there. I will register and post there too.

I have an appointment with a nurse who specialises in colostomy and consults patients both before and after surgery. But it’s important to know which questions to ask.

It’s very good to know that there are many products to choose from. I wonder, however, if cost might become an issue, if one has to rely on them all one’s life.

Thanks again! Your thoughtful messages are much appreciated!

[Lee]

I have a permanent colostomy, my decision and for me the best decision. Radiation while effective is shrinking my tumor, it also destroyed most of my rectal muscles. Thus I was tied to the toilet for hours anytime I ate.

Guess I'm one of those lucky ones. I don't have any real problems or issues with it. Most people don't even know I have one unless I tell them. I'm always open to talking to people about it, (ie educate).

Personally I find the filtered disposable bags to be perfect for me. I keep some with me and change when ever I need to. The point is I'm in control, not my bowels.

My colostomy does not stop me from doing what I did prior to my diagnoses. I can eat what I want without worrying how certain foods could effect my bowels. I can play in the ocean, go horseback riding, have an all play day with friends not worry where the nearest bathroom is.

Glad you are seeing an ostomy nurse. Let this person know how you feel about getting a colostomy, they can answer all your questions & concerns. And as Miss Molly pointed out, do check out that other board. You will soon learn there are MANY people out there who have a colostomy bag, butt you will never know it.

All the best,

Lee

[cbsmith]

I've been lurking here for a long itme but have never posted. I was diagnosed with FAP at 36 years old when I started having diarrhea and cramping. My colonoscopy revealed 100s of polyps. I had a total colectomy and rectal removal and a permanent ileostomy. I chose this because there were polyps in my rectum and I was concerned that they would continue to appear if I kept the rectum I was diagnosed stage 3C colon cancer and stage 1 rectal cancer.

I have no issues what so ever with my ostomy and actually prefer it to the issues I Had before surgery. It hasn't prevented me from doing anything I want. I would consider an ostomy and also talk to your surgeon about the risk of more polyps in your rectum in the future.

You should also look into genetic testing to find out if any siblings also have FAP and any children if appliacable. There is a 50% chance of children getting it from you and it is far easier to find out via genetic testing than having kids get yearly colonoscopies from 12 years old to monitor for polyps.

I did 12 rounds of FOLFOX and three months after I finished we found 2 lung mets and a para-aortic lymph node light up on a CT scan. Doing FOLFIRI now, but that is a topic for a different thread.

[Ethel]

Thank you very much for your replies! It helps a lot to hear from real people who have experience of living with colostomy and to be able to ask questions.

I saw the oncologist yesterday. He told me that people generally have frequent BMs for the first month or two after the surgery, which irritates the stoma, but that after that it gets better till they can wear a small pouch and empty it just once a day in the morning.

Firstly, I'm confused why the stoma would be irritated by the passing of waste, since it's made from the intestine tissue which normally contains waste.

But if, for some reason, that's the case, then what do I win in comparison with hooking up the upper intestine to what's left of my rectum? One way the anus gets irritated; the other way, the stoma. How does that help?

I also find it very hard to believe that 1-2 months is enough to stabilize BM after a colectomy, since it took me 14 months to stabilize them after a much less drastic operation to remove the tumor between the rectum and the colon.

And how can people wear a small pouch, if it should contain all the waste, plus much more liquid than it used to when the liquid was being mostly absorbed by the colon?

I was also told by the surgeon before the after-effects of my initial operation had subsided that I would feel better after having a colostomy, whereas having a colectomy without a colostomy would exacerbate by symptoms, but yesterday the oncologist told me that with a colostomy I'd be susceptible to both constipation and diarrhea, apparently just like I had been suffering from both of these conditions at once for over a year after the initial surgery. So again it seems like one and the same thing, as far as one's overall well-being is concerned.

I tried to register at the ostomy forum, but apparently it takes a long time to get the conformation e-mail from them. I even tried to register again after several days, thinking that maybe I'd made a typo in my e-mail address, but I still haven't heard from them.

Thank you very much again for replying. You can't imagine how much it means to me to be able to communicate with people who've gone through what lies ahead of me.

Personally I find the filtered disposable bags to be perfect for me. I keep some with me and change when ever I need to. The point is I'm in control, not my bowels.

Do you mean that the bags come with the filters and you dispose of both the bag and the filter at the same time? Are they expensive?

[cbsmith]

If you have FAP then you should be having a total colectomy, which removes the entire colon. This means you would have an ileostomy and not a colostomy. What the doctor Saying about having to empty the bag once a day at is not true for an ileostomy. With an ileostomy you will wear a normal size pouch and have to empty it 4-8 times a day, but it isn't as big a deal as it seems.

I haven't heard about irritation to the stoma at the beginning. It does take a few weeks or couple months for your body to adapt to it and the output to thicken up and slow down but with a properly installed appliance you should not get any irritation from it.

You really should be talking to a certified colorectal surgeon with these questions, not an oncologist.

When I had my surgery the surgeon offered both options, a j-pouch or an ileostomy. Since I aldready had a couple polyps in my rectum the possibility of more in the future and having to get rid of the j-pouch made me go with the ileostomy and I am glad I did as I don't have May issues with it.

[Soccermom2boys]

Hi Ethel--

I am a member of the permanent colostomy club! Hmmm, let me see if I can answer some of your questions while also giving you a glimpse of my experience this past year with a colostomy.

Cost--not going to lie, it can add up! Do check with your insurance to see what medical supply provider(s) they consider in-network and will therefore help with keeping the costs down a bit. For example, my insurance is Cigna and they only consider EdgePark as in-network so all of my ostomy supplies come through them (and so far zero issues with all of that!). The other cost factor is that you have a deductible to meet so if that is met through other reasons (such as scans, treatments, etc) then technically your cost for ostomy supplies for the remainder of the calendar year is low or "free". I personally like and use the Sensura Mio by Coloplast and I like that they have this in a "midi" size as I am not a big person nor tall so I don't want a large pouch hanging down too low. For a variety of other reasons it is my preferred choice which we could PM if you decide you want to go in to more detail about pouch choice. Anyway, it also uses a filter and if you have a colostomy vs an ileostomy the filter will generally last longer as your output is not as fluid like. The filter on the Mio is a full circle (and is constructed totally within the pouch itself, you will not ever touch it) so that absolutely helps it to last longer than the smaller ones on the other pouches. That filter is very important because it helps with not having ballooning issues and I would say that at least 80% of the time it does it's job well--nothing is foolproof, let's be realistic. I just do a one-piece (again, a whole other conversation we can have privately if you want down the road if you go the ostomy route) so it generally lasts 3-5 days without any leak or filter issues. So back to the point here:costs! A box of ten of these particular pouches, based on the invoice slip I get with my order, shows them to cost ~$150. That box of ten would probably last about a month, give or take. Now, would that box cost $150 with your insurance and/or a different medical supplier, I honestly don't know. This is actually one of the more "luxury" pouches shall we say so it is on the more expensive side--there are brands/models that would only cost say $50/box of ten, but they would be without a filter for sure. So to give a specific cost is tough, but this is just a sample of extremes--and only for the pouches themselves, there are other accessory items you may want/need that will need to be taken in to account if you are truly trying to gauge an annual and/or lifetime overall cost. Ask any questions and I or anyone else on here will try to help out as best we can on the cost front.

As for the stoma being irritated after the surgery, I think it's just more of an adjustment period that they say to have a low fiber diet for. After six weeks from my surgery I started back on to my fruits and veggies--I LOVE fruits and veggies and salads so staying off of them for those six weeks was no fun, but they didn't want the volume and consistency that comes with high fiber foods until that area had a chance to "heal" from the trauma of surgery. A stoma is the intestine that is folded over and literally sewn in to your abdomen so you want that stitching to have time to "take" so to speak so that is why they say take it easy on what you eat initially. Now a colostomy vs an ileostomy does matter for long-term eating because of the amount of liquid absorption and irritation of certain types of foods like nuts, popcorn, etc. I can eat anything and everything I did before the colostomy so I cannot speak for what anyone else can or cannot, but my surgeon said that really all I was missing was that reservoir (and damn I miss my rectum--such an under appreciated body part!) which had no bearing on what I could or could not eat.

Back to the pouch and size vs waste output. So we never realized that the rectum was doing such a good job of being an internal reservoir or holding ground so to speak. In reality waste is almost always sloshing through our intestines/colon and so little by little it gets pushed along until it hits the rectum-the ultimate waste containment system if you will! So when you have a pouch and an ostomy, same thing happens in that waste is coming out but not necessarily one large output all at one time (diarrhea, stomach bugs, and/or colonoscopy preps are a different matter) so you can have a pouch on that is say six inches long and about four inches across and you'll be fine. Sure, you may have to empty it a few times a day but then again you may have a day here and there with practically nothing to empty. How liquid like the output is really depends on how much of the colon itself is removed--in my case, I had the entire rectum and the sigmoid removed so the output is more paste-like. It has had no bearing on me having any bouts of diarrhea or constipation--I have had neither since dealing with radiation and chemotherapy.

All right, this has been rather long, sorry for that, but truly just want to help in answering some of your questions/concerns. In the big scheme of life, an ostomy is by no means a tragedy--not what anyone wishes for necessarily, but more like a bump in the road. Please keep asking us questions and hopefully you will be able to get on the UOAA forum as well--I am a member there also, but mostly just read vs posting. Good luck with your decision, certainly not an easy one.

[MissMolly]

Ethel:
I sense your brain is reeling with information overload and diverging opinions that are being foisted upon you.

Let me take a few moments to address some of your questions in individually and in focus.

Above all. Breath in. Breath out. Repeat. You will be able to sort through the information and options available to you. And you will be able to find the choice/decision which is the right choice/decision for you regarding proceeding with an ileorectal anastamosis or ostomy + stoma. Take your time. Listen to your intuition. Let the information and opinions that you are hearing have time to sift and settle through your own thought processes and emotions.

I saw the oncologist yesterday. He told me that people generally have frequent BMs for the first month or two after the surgery, which irritates the stoma, but that after that it gets better till they can wear a small pouch and empty it just once a day in the morning.

Firstly, I'm confused why the stoma would be irritated by the passing of waste, since it's made from the intestine tissue which normally contains waste.

But if, for some reason, that's the case, then what do I win in comparison with hooking up the upper intestine to what's left of my rectum? One way the anus gets irritated; the other way, the stoma. How does that help?

The intestines, in general, do not like to be manually manipulated and handled during surgery. The intestines do not like to be physically touched by surgeons hands and metal retractors and forceps. The intestines do not like to be pushed to the side of the abdominal cavity or hoisted onto a surgical side-table where they are laid out like a load of laundry for folding. The intestines respond to excessive surgical manipulation in the post-surgical days by one or other response:
1. Paralytic ileus: The intestines basically "shut down" in protest. Neuromuscular activity either markedly slows to a crawl or stops completely. This is due to the surgical trauma and insult to the delicate intestinal functionality. Paralytic ileus can be of short-term duration (a few days) to a longer problem (weeks). Supportive care is usually the course designation: IV fluids; anti-nausea medications; Reglan (to encourage resumption of GI motility) and/or hormone support (ex. growth hormone); NG tube when warranted to decompress the stomach and intestinal lumen.
2. Episodic diarrhea: The neurological sensors embedded in the intestines become hyper-excitable post-surgery. Gastric dumping and intestinal dumping, can result - episodic diarrhea. Use of Immodium or Bentyl or other anti-spasmotic medications can ease the distress. Episodes of dumping are usually correlated with the intake of food/drink. Take in a few bites of food and . . . dumping diarrhea.

Time and patience are the best resources and aid for both paralytic ileus and episodic diarrhea/GI dumping. A gentle surgical hand is immensely helpful at the forefront to limit disruption in the aftermath of surgery.

Firstly, I'm confused why the stoma would be irritated by the passing of waste, since it's made from the intestine tissue which normally contains waste.

But if, for some reason, that's the case, then what do I win in comparison with hooking up the upper intestine to what's left of my rectum? One way the anus gets irritated; the other way, the stoma. How does that help?

The degree of irritation to the skin surrounding the stoma (parastomal skin) is in direct concert to the location of the diversion ostomy/stoma.

An ostomy higher up the digestive tract (small intestine ileostomy) will have a higher degree of caustic digestive enzymes than an ostomy with resection lower in the digestive tract (large intestine colectomy). Ileostomy output has a higher degree of digestive enzymes and is more liquid in nature than is colostomy output. The result is fecal output that can pool or collect around the stoma itself, not falling into the ostomy pouch. Fecal output with a high concentration of digestive enzymes that remains in contact with the parastomal skin for long-periods of time will cause skin irritation, weeping, and/or actual skin excoriation and ulceration.

Skin irritation with a colostomy in the months after surgery is relatively low. The fecal output is relatively formed (like a similar anal exiting bowel movement) with a colostomy. Most people with a colostomy have a bowel schedule of elimination that is similar to pre-surgery. That is, if someone had a bowel movement once or twice a day pre-colostomy, most likely they will reclaim an elimination schedule similar with stomal activity producing output only once or twice a day. People with a colostomy will generally empty their pouch (for those who opt to use drainable pouches) or replace their pouch (for those who opt to use disposable pouches). Most people will not walk around with a full or even semi-full pouch on. People will respond to empty or change their ostomy pouch in accordance to the presence of output. It really is analogous to going to the toilet and defecating. Here, you drain or change your pouch after defecating.

Skin irritation with an ileostomy in the months after surgery is remedied by using a spray-on skin protectant. Cavilon Liquid Skin Prep is a common favorite among ileostomates. It is a product made by Nex-Care. It is a clear, light film covering that is sprayed/spritzed to the parastomal skin. It is a clear skin protectant against the digestive enzymes found in ileostomy output. Another feature is to use an adaptic ring seal, commonly known as Eakin Cohesive Seals. These rings act as a gasket does to a water faucet. The rings are a silicon-based or hydrocolloid-based material which is configured as a ring to encircle the parastomal skin - in effect, preventing fecal output from pooling around the opening of the stoma.

Skin irritation with an ileoanal or ileorectal anastamosis or J-pouch is owing to the same higher concentration of digestive enzymes than would be the case with a present and existing large intestine. In the absence of a large intestine (resected), the contents of the small intestine are now exiting through the anus. The anal skin becomes irritated from the caustic digestive enzymes in small intestine output. Again, there are methods to limit prolonged exposure to the fecal output. Use of a bidet is oft the most relieving. Use of zinc oxide around the opening to the anus. Use of cotton under ware to limit moisture in genital tissue folds.

Your MD is correct in communicating to you that the distress of digestive enzyme skin irritation does ease in the months after surgery. How? Why? The remaining small intestine adapts and adjusts and compensates for its departed neighbor and friend the large intestine. The small intestine begins to act more like a large intestine, absorbing water more efficiently (a job once reserved to the large intestine). The overall composition of small intestine fecal output is less caustic over time, the degree of digestive enzymes remaining at the end of the digestive path eases and decreases. A lower digestive enzyme component = lower skin irritation - be the skin parastomal skin or anal skin.

I also find it very hard to believe that 1-2 months is enough to stabilize BM after a colectomy, since it took me 14 months to stabilize them after a much less drastic operation to remove the tumor between the rectum and the colon.

This does sound a bit optimistic in terms of time projections. I would estimate that my GI system was work-in-progress for a good 6-8 months post surgery. I had complete removal of my large intestine and rectum + 12 inch resection of small intestine. I have an end ileostomy. That is not to say that the full 6-8 months was horribly disruptive with uncontrolled stomal output. It was not. Rather, the first 2 months were the most challenging (every time I ate even a small something, my ileostomy would discharge) with a gradual easing of GI disruption over time. GI healing was a process over time rather than a quick light-bulb event.

Immodium, Bentyl, and pincture of opium are each avenues to ease an overactive and hypersensitive GI tract. Again, the neuromuscular underpinnings of the GI tract are physically traumatized by surgical manipulation and handling. The easier is one's surgeon's handling of the intestines, the less opt one is to have serious post-operative difficulties. The more one can integrate the mind-body connection (yoga, meditation, progressive relaxation) the better the milieu for GI tract healing and regaining of homeostasis.

And how can people wear a small pouch, if it should contain all the waste, plus much more liquid than it used to when the liquid was being mostly absorbed by the colon?

I wear a 5" mini-pouch with an end ileostomy. The answer to your question is simple: I drain and empty my pouch throughout the day, generally 6-8 times a day. I do not know anyone with an ostomy who prefers to have a full pouch on their abdomen. The general practice is that one empties one's pouch with it is about 1/2 to 2/3 full. Draining and emptying my pouch takes less than 2 minutes. It is a very simple process. Open up the tail of the pouch over a toilet bowel and allow to drain. For thicker fecal output, people generally use a small squirt bottle and infuse 2-3 ounces of warm water in through the tail of the ostomy pouch, swish water and fecal output, open the tail of the pouch over a toilet bowel and drain.

I am a tiny person. 5'2" and 85 pounds. A standard 10" or 12" ostomy pouch would be like wearing a second pair of pants. A mini-pouch is perfect for me.

But, yes . . . if you are a large eater or a person who consumes food with gusto . . . yes, you would need to use a larger-volume pouch. Pouches come in an array of sizes: Maxi-pouches (14-16"), standard pouches (12"), midi pouches (8-10"), mini pouches (5-6"). You can mix and match pouch sizes for different needs and times of the day if you think your ostomy will be more or less active in releasing fecal output. There is infinite flexibility in ostomy pouching.

I tried to register at the ostomy forum, but apparently it takes a long time to get the conformation e-mail from them. I even tried to register again after several days, thinking that maybe I'd made a typo in my e-mail address, but I still haven't heard from them.

Perhaps the server has been down at the UOAA. Or other malfunction.

There is no waiting period to sign-on and to compose a first thread/post. You do not need to be approved or receive an e-mail. You should be able to register and post a first post within minutes. If you continue to have difficulty, you can contact the UOAA webmaster for support. Jimbob (user name on the UOAA forum) is the more active moderator, and he should be able to facilitate difficulties you are encountering in registering.

The UOAA was a virtual life-line to me after my emergency resection and ileosotomy. It was a "brave new world" for me, becoming an ostomate. The support, wisdoms, and friendship that I received from the members of the UOAA was genuinely heartwarming and buoyed my depleted spirits. Like this forum for the Colon Club, the UOAA forum is a testament to the power of people helping people.

You will find me at the UOAA. As "Button."

On costs for ostomy supplies and products. Yes, you are correct that ostomy supplies are a lifetime need. The cost for ostomy products, in the absence of medical insurance, is significant. With medical insurance, the costs for ostomy products is doable.

Ostomy products are covered under medical insurance plans as durable medical equipment. Policy benefits that are applicable for DME (durable medical equipment) will define your reimbursement. Medicare guidelines set monthly allowable quantities for ostomy wafers and ostomy pouches and accessory supplies (Eakin Cohestive Seals, skin preps, skin care wipes et. al).

Without insurance, a "typical" box of 30 pouches is +/- $120. This is an overall estimate, knowing that specific pouches/wafers may be less or more.

I have an insurance plan that reimburses ostomy supplies at 80% after meeting the yearly deductible.

Medicare allowable(s)for ostomy supplies, allowables per month:
1. 60 closed-ended pouches (colostomy); OR
2. 15 ostomy wafers + 20 drainable ostomy pouches.
3. 20 Eakin Adaptic Cohesive seals

What you do not use in a month, you can stock-pile.

On occasion, I will need to private-pay for an additional box of one thing or another.

If a person has an identified need for a higher volume of supplies, an MD letter and request for override is availing. For example, someone with a high out ileostomy due to short-gut syndrome may need 30 drainable pouches a month. The extra supplies needed can be covered by one's insurance with a MD letter + override request.

There are also several companies that cater to those people who have the situation where they must private pay for ostomy supplies (ex. uninsured or under-insured or visiting out of state and need a few temporary supplies). These companies provide ostomy supplies at a discount.

I hope that you can weed through what I have written and find aspects helpful to you,
- Karen -

Best wishes as you continue to navigate your choices.

[Lee]

Personally I find the filtered disposable bags to be perfect for me. I keep some with me and change when ever I need to. The point is I'm in control, not my bowels.

Do you mean that the bags come with the filters and you dispose of both the bag and the filter at the same time? Are they expensive?

I use Hollister 2 piece system. A wafer that is attached to my skin and a disposable bag that I take off and put on like a tupperware lid. Yes the filter is actually built into the bag. It is about 1 inch square located near the top of the bag and has charcoal in it. When I pass gas, the gas is released thru this filter.

Hope this helps,

Lee

[Ethel]

Thank you so much for your detailed replies! I could never thank you enough!

If you have FAP then you should be having a total colectomy, which removes the entire colon. This means you would have an ileostomy and not a colostomy. What the doctor is saying about having to empty the bag once a day at is not true for an ileostomy. With an ileostomy you will wear a normal size pouch and have to empty it 4-8 times a day, but it isn't as big a deal as it seems.

Thank you! I thought colostomy and ileostomy were the same thing. What size is a normal size pouch? Emptying it 4 times a day doesn’t seem like a big deal, maybe even 8, but what about at night?

I haven't heard about irritation to the stoma at the beginning. It does take a few weeks or couple months for your body to adapt to it and the output to thicken up and slow down but with a properly installed appliance you should not get any irritation from it.

It’s so reassuring to hear that the stoma might not be irritated from the passing of waste at all, even in the beginning, and that in a couple of months it will thicken and slow down, even if the entire colon has been removed.
Now I have to balance between constipation and diarrhea, which means that I can’t take medications against either. I wonder if there can still be difficulty moving one’s bowels after a full colectomy?

You really should be talking to a certified colorectal surgeon with these questions, not an oncologist.

Of course, I’ll be talking to the surgeon too! But I thought it wouldn’t hurt to ask the colorectal oncologist as well, since he treats people who’ve had colectomy.

When I had my surgery the surgeon offered both options, a j-pouch or an ileostomy. Since I already had a couple polyps in my rectum the possibility of more in the future and having to get rid of the j-pouch made me go with the ileostomy and I am glad I did as I don't have many issues with it.

I’m also inclined that way, but need to get a clearer picture of what it’s like.

Cost--not going to lie, it can add up! Do check with your insurance to see what medical supply provider(s) they consider in-network and will therefore help with keeping the costs down a bit. For example, my insurance is Cigna and they only consider EdgePark as in-network so all of my ostomy supplies come through them (and so far zero issues with all of that!). The other cost factor is that you have a deductible to meet so if that is met through other reasons (such as scans, treatments, etc) then technically your cost for ostomy supplies for the remainder of the calendar year is low or "free". I personally like and use the Sensura Mio by Coloplast and I like that they have this in a "midi" size as I am not a big person nor tall so I don't want a large pouch hanging down too low. For a variety of other reasons it is my preferred choice which we could PM if you decide you want to go in to more detail about pouch choice. Anyway, it also uses a filter and if you have a colostomy vs an ileostomy the filter will generally last longer as your output is not as fluid like. The filter on the Mio is a full circle (and is constructed totally within the pouch itself, you will not ever touch it) so that absolutely helps it to last longer than the smaller ones on the other pouches. That filter is very important because it helps with not having ballooning issues and I would say that at least 80% of the time it does its job well--nothing is foolproof, let's be realistic. I just do a one-piece (again, a whole other conversation we can have privately if you want down the road if you go the ostomy route) so it generally lasts 3-5 days without any leak or filter issues. So back to the point here: costs! A box of ten of these particular pouches, based on the invoice slip I get with my order, shows them to cost ~$150. That box of ten would probably last about a month, give or take. Now, would that box cost $150 with your insurance and/or a different medical supplier, I honestly don't know. This is actually one of the more "luxury" pouches shall we say so it is on the more expensive side--there are brands/models that would only cost say $50/box of ten, but they would be without a filter for sure. So to give a specific cost is tough, but this is just a sample of extremes--and only for the pouches themselves, there are other accessory items you may want/need that will need to be taken in to account if you are truly trying to gauge an annual and/or lifetime overall cost. Ask any questions and I or anyone else on here will try to help out as best we can on the cost front.

I have watched a demonstration of one-piece vs. two-piece system on you tube, to get an idea of how it works. It seems to me that one-piece is likely to be more secure since the connection between the wafer and the pouch itself is sealed during manufacturing. On the other hand, with the two-piece system it appears that one could change pouches from day (smaller) to night (larger) to be able to get a good night’s sleep.

I didn’t see the filter in the presentation. Is it built into the pouch in both the one-piece and the two-piece systems? And are some filters full-circle, while others are half-circle, just below the stoma? And do you mean that the filters on one-piece systems last longer because they are constructed totally within the system and don’t get touched by hand? Since I need a full colectomy, I assume my output will be quite liquid, at least at first, so I’ll likely need a very good filter. I’ve read on the Ostomy board that somebody puts rolled up toilet paper in the pouch alongside the filter to protect it from moisture; this can be done only with a two-piece system, right?

I also wonder how it works in general. Does one generally throw out the pouch after emptying it, or empties it and keeps it for one day (or longer?), or empties it and flushes it with water to clean it, if possible? If one alternates between different sizes of pouches for day and night, can one flush the night pouch and keep it for several nights? With a two-piece system, how long does one keep the same wafer, to make sure it doesn’t get unglued unexpectedly? Can the skin get irritated under the wafer, since it’ll always be covered with some kind of sticky adhesive, and, of course, since one has the stoma in a specific place, one can’t help but always stick the wafer to the same patch of skin for the rest of one’s life?

Since I haven’t seen the ostomy nurse yet, I don’t know yet what kind of supplies or brands will be available and what I’ll have to pay for, if anything, and how much. But even if now I won’t have to pay for anything (not very likely, but possible), I have no idea what the future holds, and generally money is an issue for me. I also wonder, if ostomy supplies is something one gets a prescription for, since, in my experience, insurance pays only for prescription products?

Please, feel free to PM me with anything you’d rather discuss in private.

As for the stoma being irritated after the surgery, I think it's just more of an adjustment period that they say to have a low fiber diet for. After six weeks from my surgery I started back on to my fruits and veggies--I LOVE fruits and veggies and salads so staying off of them for those six weeks was no fun, but they didn't want the volume and consistency that comes with high fiber foods until that area had a chance to "heal" from the trauma of surgery. A stoma is the intestine that is folded over and literally sewn in to your abdomen so you want that stitching to have time to "take" so to speak so that is why they say take it easy on what you eat initially. Now a colostomy vs an ileostomy does matter for long-term eating because of the amount of liquid absorption and irritation of certain types of foods like nuts, popcorn, etc. I can eat anything and everything I did before the colostomy so I cannot speak for what anyone else can or cannot, but my surgeon said that really all I was missing was that reservoir (and damn I miss my rectum--such an under appreciated body part!) which had no bearing on what I could or could not eat.

I’m glad to hear that if the stoma does get irritated by the passing of waste, it only happens after the surgery. Since I’ll have the entire colon removed, I’ll probably have some diet limitations. The oncologist told me that raw vegetables will be a problem (as well as fried foods), but fruit, nuts, bread and dessert not so much. That reassured me, because I can’t eat raw vegetables even now, unfortunately, but I have to eat walnuts with every meal to keep my bowels moving, and I have to eat some white bread with jam or other dessert to keep my weight.

I wonder how well food gets digested after a full colectomy, and if keeping one weight becomes more complicated?

I also wonder if with considerably less liquid absorbed into the body, dehydration might become an issue, especially since I’ve always been inclined towards it (I don’t go out if the temperature is in the upper 70s or higher, and still drink so much liquid in the summer that I used to worry that I might have diabetes, but all the sugar blood tests came up normal, touch the wood)? On the other hand, if I drink more fluid, won’t it prevent the waste from thickening eventually?

Back to the pouch and size vs waste output. So we never realized that the rectum was doing such a good job of being an internal reservoir or holding ground so to speak. In reality waste is almost always sloshing through our intestines/colon and so little by little it gets pushed along until it hits the rectum-the ultimate waste containment system if you will! So when you have a pouch and an ostomy, same thing happens in that waste is coming out but not necessarily one large output all at one time (diarrhea, stomach bugs, and/or colonoscopy preps are a different matter) so you can have a pouch on that is say six inches long and about four inches across and you'll be fine. Sure, you may have to empty it a few times a day but then again you may have a day here and there with practically nothing to empty. How liquid like the output is really depends on how much of the colon itself is removed--in my case, I had the entire rectum and the sigmoid removed so the output is more paste-like. It has had no bearing on me having any bouts of diarrhea or constipation--I have had neither since dealing with radiation and chemotherapy.

Yes, but won’t it be different with the entire colon removed? If waste is almost always sloshing through our intestines, won’t it be pouring out continually through the stoma after the entire colon is removed?

Ileostomy output has a higher degree of digestive enzymes and is more liquid in nature than is colostomy output. The result is fecal output that can pool or collect around the stoma itself, not falling into the ostomy pouch. Fecal output with a high concentration of digestive enzymes that remains in contact with the parastomal skin for long-periods of time will cause skin irritation, weeping, and/or actual skin excoriation and ulceration. Skin irritation with an ileostomy in the months after surgery is remedied by using a spray-on skin protectant. Cavilon Liquid Skin Prep is a common favorite among ileostomates. It is a product made by Nex-Care. It is a clear, light film covering that is sprayed/spritzed to the parastomal skin. It is a clear skin protectant against the digestive enzymes found in ileostomy output. Another feature is to use an adaptic ring seal, commonly known as Eakin Cohesive Seals. These rings act as a gasket does to a water faucet. The rings are a silicon-based or hydrocolloid-based material which is configured as a ring to encircle the parastomal skin - in effect, preventing fecal output from pooling around the opening of the stoma.

The idea of waste leaking out of the stoma and not getting into the pouch does worry me, but it’s good to know that there are ways to deal with it. I’ve written down the names of both these remedies. Does the adaptic ring seal go between the stoma and the opening on the wafer? It sounds like the better solution, since it will both protect the skin and stop the waste from spilling, right? Do people tend to wear it continually to prevent leaks?

Is there anything one can spray on the stoma itself if it gets irritated post-surgery?

This does sound a bit optimistic in terms of time projections. I would estimate that my GI system was work-in-progress for a good 6-8 months post surgery. I had complete removal of my large intestine and rectum + 12 inch resection of small intestine. I have an end ileostomy. That is not to say that the full 6-8 months was horribly disruptive with uncontrolled stomal output. It was not. Rather, the first 2 months were the most challenging (every time I ate even a small something, my ileostomy would discharge) with a gradual easing of GI disruption over time. GI healing was a process over time rather than a quick light-bulb event.

Immodium, Bentyl, and pincture of opium are each avenues to ease an overactive and hypersensitive GI tract. Again, the neuromuscular underpinnings of the GI tract are physically traumatized by surgical manipulation and handling. The easier is one's surgeon's handling of the intestines, the less opt one is to have serious post-operative difficulties. The more one can integrate the mind-body connection (yoga, meditation, progressive relaxation) the better the milieu for GI tract healing and regaining of homeostasis.

If the ileostomy discharges only after eating, it looks very doable!

I also wonder if staying as long as possible on broth, water and juice post-surgery and substituting broth for some meals afterwards might help to have less discharge through the stoma and heal quicker?

Currently I’m precariously balanced between constipation and diarrhea, and so I can’t take medicines against either, as it sends me to the opposite extreme. Or does it become easier to move one’s bowels after surgery?

Perhaps the server has been down at the UOAA. Or other malfunction.

There is no waiting period to sign-on and to compose a first thread/post. You do not need to be approved or receive an e-mail. You should be able to register and post a first post within minutes. If you continue to have difficulty, you can contact the UOAA webmaster for support. Jimbob (user name on the UOAA forum) is the more active moderator, and he should be able to facilitate difficulties you are encountering in registering.

I find that I can’t log in, and without it I can’t post. I sent an e-mail to the moderators, but haven’t heard from them yet.

I wear a 5" mini-pouch with an end ileostomy. The answer to your question is simple: I drain and empty my pouch throughout the day, generally 6-8 times a day. I do not know anyone with an ostomy who prefers to have a full pouch on their abdomen. The general practice is that one empties one's pouch with it is about 1/2 to 2/3 full. Draining and emptying my pouch takes less than 2 minutes. It is a very simple process. Open up the tail of the pouch over a toilet bowel and allow to drain. For thicker fecal output, people generally use a small squirt bottle and infuse 2-3 ounces of warm water in through the tail of the ostomy pouch, swish water and fecal output, open the tail of the pouch over a toilet bowel and drain.
I am a tiny person. 5'2" and 85 pounds. A standard 10" or 12" ostomy pouch would be like wearing a second pair of pants. A mini-pouch is perfect for me.

But, yes . . . if you are a large eater or a person who consumes food with gusto . . . yes, you would need to use a larger-volume pouch. Pouches come in an array of sizes: Maxi-pouches (14-16"), standard pouches (12"), midi pouches (8-10"), mini pouches (5-6"). You can mix and match pouch sizes for different needs and times of the day if you think your ostomy will be more or less active in releasing fecal output. There is infinite flexibility in ostomy pouching.
Medicare allowable(s) for ostomy supplies, allowable per month:
1. 60 closed-ended pouches (colostomy); OR
2. 15 ostomy wafers + 20 drainable ostomy pouches.
3. 20 Eakin Adaptic Cohesive seals

What you do not use in a month, you can stock-pile.

On occasion, I will need to private-pay for an additional box of one thing or another.

I’m a light eater too, although I’m 5-7. So far I’m thinking to use a larger pouch all the time in the beginning while my digestive system will be adjusting and I’ll be less mobile, and later alternate between a larger size at night and smaller during the day, if it suffices.

Are closed-ended the one-piece systems which one throws away after draining and drainable the two-piece ones that one would keep for a day (or longer)? 60 closed-ended a month means 2 pouches a day, but you say it has to be emptied 6-8 times a day, so that doesn’t seem very workable, right? With the drainable ones it seems there’ll be more flexibility. And 15 wafers a month means a wafer lasts for two days in a two-piece system? But will 20 adaptic seals last for a whole month at first? Can one use them with one-piece systems too? I’ve read that the waste can dissolve “the rubber ring” – I assume they were talking about the wafer – so does the adaptic seal protect the wafer as well as the skin, or it can be dissolved by the waste too, for instance, while one is asleep?

If a person has an identified need for a higher volume of supplies, an MD letter and request for override is availing. For example, someone with a high out ileostomy due to short-gut syndrome may need 30 drainable pouches a month. The extra supplies needed can be covered by one's insurance with a MD letter + override request.

That’s great to know!

[quote=”MissMolly”]

uninsured or under-insured or visiting out of state and need a few temporary supplies). These companies provide ostomy supplies at a discount.

That’s nice that they provide discounts, but do they provide the same range of options?
[quote=”Lee”]I use Hollister 2 piece system. A wafer that is attached to my skin and a disposable bag that I take off and put on like a tupperware lid. Yes the filter is actually built into the bag. It is about 1 inch square located near the top of the bag and has charcoal in it. When I pass gas, the gas is released thru this filter.[/quote]
Is it released through the filter into the bag? But then the bag would balloon, wouldn’t it? I thought the whole point of using a filter was to prevent this from happening, so that one could sleep in peace?


I also wonder if I’ll be prone to developing hernias with an ileostomy, or as long as I stay slim, empty the pouch often during the day and don’t lift anything, I’ll be OK?

I apologize for asking so many questions, many of which I’m sure sound naive to you. I’m very new to this. I keep googling various things to find out what they are.

I couldn’t possibly thank you enough for taking the time to answer my questions. You are very kind!

[MissMolly]

Ethel:
Your mind is really working overtime on giving thought to the prospects of an ostomy for management of your FAP. Let me try to slow down the tempo so that you do not feel as overwhelmed.

You have time to give thought to your decisions and choices. You will do fine.

First, poster cbsmith is correct in his analysis that you will need a total colectomy (complete removal of the large intestine) to fully manage the risk associated with your FAP. That will require either:
1. An end ileostomy (complete removal of the large intestine with stoma formed by the distal end of the ileum. Removal of all or part of your rectum + anal sphincters will need to be decided in discussion with a colorectal surgeon).
OR
2. An ileoanal anastamosis (complete removal of the large intestine and compete removal of the rectum; the distal end of the ileum is connected to the anus, anal sphincters are intact).
OR
3. An ileorectal anastamosis (complete removal of the large intestine with retention of all or part of the rectum; the distal end of the ileum is connected to the remaining portion of the rectum, anus and anal sphincters are intact).

cbSmith is correct in that a colostomy would not be an option with complete removal of the large intestine. Complete removal of the large intestine (plus resection of the rectum if you have rectal polyps or are at risk for developing rectal polyps due the the FAP gene deficit). A colostomy requires a large intestine. A colostomy is a stoma/ostomy anywhere along the length of the large intesinte.

A person with a colostomy has the option of using closed-ended ostomy pouches. These are single-use, disposable pouches. Medicare's allowance of 2 closed-ended pouches a day is usually sufficient for someone with a colostomy. A person with a colostomy has a bowel schedule similar to an intact digestive system. That is, a colostomy is active - on average - about once or twice a day. With a closed-ended pouch, a person with a colostomy will change the pouch after the colostomy is active which is typically once to twice a day. Closed-ended pouches are a convenient, low-fuss, low-mess, unencumbered option for ostomy management for a colostomy.

A person with an ilesostomy will use a drainable ostomy pouch. The closed-ended pouch is not a realistic option for use the an ileostomy due to the increased frequency/need to empty an ileostomy pouch. Ileostomy output is generally the consistency of a thickened-liquid and the output is more frequent than the 1-2 times a day for a colostomy. A person with an ileostomy will generally empty a drainable pouch about 6-8 times a day. Mind you, it is recommended that a pouch be emptied with it is 1/2 to 2/3 full. Also, may people prefer to empty fairly frequently as they prefer to have a flat and empty pouch.

Medicare allowables for an ileostomy are sufficient, to the large degree. Medicare allowables (also followed by private and group insurance plans) provide for 20 one-piece drainable pouches (wafer and pouch are a single unit) OR 15 wafers + 20 drainable pouches as part of a two-piece ostomy system (wafer and pouch are separate and attach by either a tupperware locking mechanism or an adhesive coupling system). Medicare allows for a box of 20 Eakin Cohesive Adaptic Seals (or similar). Most people do not use a full Eakin Cohesive Seal with each wafer change. Rather, a seal is cut in half and rolled like play dough into a log form; the log form is then used to circle the opening on the wafer for the stoma. 20 Eakin Seals becomes enough for 40 wafer changes.

I do not see any overt difficulties on the UOAA forum. If you want to PM me, I would be happy to help get you logged on and registered with the UOAA forum. You mention that the moderator has not responded back to you. JimBob is the "chief" forum moderator. He is also a colostomate due to rectal cancer. He works at the UOAA office and is also available by telephone to the UOAAs 1-800 listed on the website. The forum does have a full-time, dedicated webmaster. Help is available to you if you continue to find obstacles to registering.

The UOAA forum has members with end ileostomies due to FAP who have walked your similar journey.

Your many and varied questions are the food and fonder that the members of the UOAA are happy to answer and share opinions and advice. New members are greeted with a flood of well-wishes and an outreach of support. It is like a virtual hug. All to say, call the 1-800 of the UOAA to help trouble-shoot the registration issues that you are having. The UOAA's sole advocacy is to reach out and assist individuals, such as yourself, who are facing the possibility of ostomy surgery. The resources of the UOAA are amazing and will be a valued resource to you as you wade through your decision processes.

I was so impressed with the UOAA and its out-reach to me as a person new to an unexpected ostomy, that I have included the UOAA in my estate planning as a benefactor. I will be leaving a large donation to the UOAA upon my passing. I want the UOAA to continue to reach out to individuals new to an ostomy in the years to come, just as the UOAA reached out to me when I most needed an uplifting and comforting presence. I never saw myself as anything less than whole after my ostomy surgery owing to the vital connection and interaction that the UOAA provided. I am indebted to the organization.
- Karen -
- Karen -

[MissMolly]

Ethel:
You queried about diet, food choices, and dehydration without a colon. You also are pondering weight loss/weight gain without a colon.

The digestion, metabolism, and absorption of food nutrients is the the workings, function, and responsibility of the small intestine. The lining of the small intestine is notable for fine finger-like projections called villa. Each villa has a small capillary and a small lymphatic vessel. Food is broken down into its essential nutrients, amino acids, and glucose as it passes through the small intestine and are absorbed into the bloodstream and lymph system via the villa.

The large intestine has a much less vital role than the small intestine - and, thus, the ability to survive and live well without one's colon/large intestine. The large intestine's role is the absorption of water. It also serves as a holding receptacle for the remnants of food taken in and digested, on its way toward the rectum and anus and eventual discharge out of the body as fecal waste.

All of your food's nutrient value is absorbed by the length of the small intestine. The large intestine/colon plays no role here. Loss of your large intestine/colon will have little bearing on whether you lose or gain weight. The body's hormones that affect metabolism and feelings of satiety and hunger act on receptors of the small intestine.

The limitation of food choices with an ileostomy has less to do with the loss of the colon and more to do with the diameter of the stoma and its expansibility to food particulates that may need to exit the stoma.

Here's the deal: An ileosotmy stoma is about 3/4" to 1" in width. It really is not a very large opening. The stoma is sutured to the skin, the portion of small intestine brought to the surfaced and folded back upon itself like a turtleneck sweater and sutured to the surrounding skin. The problem with food choices comes with how the food choice is digested and its residual remnants.

Popcorn, for example, can be universally problematic for an ileosotmy stoma owing to the rough edges of popcorn husks. Popcorn husks feel like passing a wad of steel wool or SOS cleaning pad.

Chinese vegetables and coconut (as in macaroon cookies) are another problematic food. Chinese bean sprouts and coconut do not digest fully and tend to come out whole, as they came in. Eaten as several sprouts or several macaroon cookies, they can coagulate and form a larger bolus that can be difficult to pass through the limited diameter stoma. Picture a marble trying to exit through a straw. Ouch and double ouch.

The membrane coverings of of oranges and grapefruit are also problematic. It is best to section oranges and grapefruit, remove the membrane coverings, before eating. Whole mushrooms are a no, no. Mushrooms passing through the digestive tract will swell with water and expand and can be difficult to squeeze through the opening of a narrow ileostomy opening. Mushrooms diced and chopped and diced again are fine/OK to eat. Large nut and large nut pieces are another area of caution. The risk is in a large nut casing, indigestible, that blocks the exit of a stoma. Nuts that are diced or slivered are fine/OK. Avoid fibrous foods such as asparagus or long pieces of celery. Rule of thumb: If a food item has the potential to block the food disposal of your kitchen sink, then the same food item is at risk to block the exiting of an ileostomy stoma.

You can eat raw vegetables with an ileostomy. You can eat a green salad. But you will want to eat only a small portion size and you will want to chew, chew, chew and drink plenty of fluids with meals.

Colostomy stomas are larger in diameter than those of an ileostomy and are less prone to a mechanical food blockage. Still, I recommend a cautious approach to food and eating with a colostomy. Scar tissue and adhesions can tether to portions of the intestine and lead to pseudo-obstructions with borderline food choices.

All and all, foods that are fibrous and stringy . . . foods that have a high residual effect (non-soluble, do not digest completely) . . foods that are rough or have rough edges (nuts, popcorn husks) are foods to approach with caution.

Some people with an ileostomy can eat anything. Some people with an ileostomy have to eat/select foods with caution. The main point being the diameter/width of the stoma at the surface of the skin. The stoma has to be able to stretch to accommodate any food bolus that needs to exit. It it cannot stretch, the food bolus will get stuck. And that is a very painful proposition. Not to be taken lightly.

I generally advise people with a new ileostomy to eat gently. Eat small portion sizes (1/3 cup to 1/2 cup). Chew, chew, chew, and chew some more to break down food particles so that the digestive process is more efficient. Drink, drink, drink, and drink some more to help move food material through the digestive tract like a swift moving river.

Regarding dehydration with a new ileostomy . . .

Yes, you will be at higher risk for dehydration for the first several months with a new ileostomy. It is important to monitor for early signs of kidney failure.

The small intestine, over time, compensates for the loss of the large intestine. The small intestine takes on the role of water absorption in the weeks and months after surgery.

It is advise to use an electrolyte replacement in the early weeks and months after a total colectomy. Nunn's Tablets. CeraLyte electrolye tablets. Both are excellent. Avoid sugary energy drinks (Gatorade, Power Aide) as the high concentration of sugar can lead to gastric dumping. Especially avoid energy drinks with high-frutose corn syrup. High sugar concentration will lead to dumping syndrome of the stomach and small intestine with worsening diarrhea and dehydration.
- Karen -