How are you doing after ileostomy reversal?

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Jon Olis
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Location: Laguna Niguel, CA

Re: How are you doing after ileostomy reversal?

Postby Jon Olis » Tue May 18, 2010 9:36 am

Rick,

You really need to try the metamucil wafers. I have no colon and it helps so much. I would try the metamucil in combination with mostly soluble fiber and the Lomitrol. Stay away from insoluble fiber for now. Soluble fiber is stuff like bananas, white bread, pasta, potatoes, rice. Insoluble fiber is stuff like raw veggies, wheat bread, whole grains, etc.
Jon Olis
2009 Colondar Model
Diagnosed 6/04 Stage III CC, 7/16 Nodes, FAP
Subtotal Colectomy 6/04 failed,Ileostomy 6/04
Folfox
Ileostomy Rev 1/05
Laser Endoscopy 8/05 perforated duodenum
Emergency surgery to repair perforation
Currently 9.5 years NED!

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: How are you doing after ileostomy reversal?

Postby Surroundedbylove » Tue May 18, 2010 10:59 am

mikefunkpac wrote:I am SOOOOO happy to have stumbled on this stream!!!! I just scheduled my iliostomy reversal today (June 7 is my date with my surgeon) and I have been apprehensive about what to expect. I am very grateful to all of you who have shared your experiences, it makes me feel much more optomistic and informed as to what to expect. Thanks!!!!!!!!!


I saw you mentioned that you stumbled on this thread. If you haven't seen my thread about my experience and eating patterns, you may be interested. Here it is

viewtopic.php?f=1&t=10327&hilit=takedown+info

Also, Eric (Brown Bagger) did a thread about his experience. It was very helpful to me.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Airmid
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Joined: Fri Feb 05, 2010 9:26 pm
Location: Ontario Canada

Re: How are you doing after ileostomy reversal?

Postby Airmid » Tue May 18, 2010 1:08 pm

BrownBagger wrote:The Metamucil wafers are working great. They just seem to lube everything up and it slides right out. Nice. I've been playing around with the dosage. I'm down to one wafer in the morning with my cereal, and that seems to be sufficient. I OD'd at one point over the weekend and got into a cluster/Imodium situation. That's reversal for you--the old trial and error thing.

Hi Eric
I'm glad to hear that the metamucil wafers are working for you. I know trial and error. I tried eating ratatouille-a veg stew of tomatoes, onions, eggplant, zuccini, garlic that gave me major diarrhea--then I take immodium. That was 6 days ago and I'm still not back on track. I have a couple of good days (6 bms) then a bad day (15bms). My surgeon said my experience at this stage (2 and half months post reversal) is typical, but drives people crazy. All I know is I'm holding on to the hope that gradually things will improve over time.
Airmid
Airmid
02/08 DX-mCRC, liver mets
03/08 Xeloda 6wks, Radiation
06/08-LAR, Temp Ileostomy
10/08 Folfox 8 treatments
04/09-Liver resected
05/09 5FU 8 treatments
02/10 Ileostomy Reversal
11/11 CT Scan NED

RickMurtagh
Posts: 89
Joined: Fri Feb 26, 2010 1:32 pm
Location: Randolph, NJ

Re: How are you doing after ileostomy reversal?

Postby RickMurtagh » Tue May 18, 2010 6:45 pm

So far I am two weeks into the Anderson stool management plan. I will start the Metamucil after next week when I move to the highest Lomotil/Immodium combos. I figure If I stick with the plan and something changes, I will know just what it is that made the change.
Rick, 54
DX III two tumors Feb 09
Chemo/rad March 09
Ileo June 09
FOLFOX July 09
Takedown April 10
Mets to the sacrum and presacral area March 11 - NOT
Chronic infection of sacrum that looked like cancer (including a blockage)!
Permanent ileo April 11

tooyoung
Posts: 41
Joined: Sat Dec 26, 2009 9:08 pm

Re: How are you doing after ileostomy reversal?

Postby tooyoung » Sat May 22, 2010 8:24 am

I'm a little over 4 weeks out from my reversal. On the day of my reversal (8 weeks after "installing" the loop ileo), I had x-rays with an enema (clear liquid) to check for leakage or twists in my j-pouch. They checked my whole colon. Word of advice for the enema, the digital exam was painful so they used a hose only and not the normal enema end. That made the procedure a whole lot better than it would have been. I was able to see the x-rays on a computer screen which was cool. It was especially helpful to see what my j-pouch looked like. Weird feeling when I sat on the toilet to let some of the solution drain out - wasn't used to things coming out of there.

I started BMs the day of my surgery (Wed) - actually liquid streaming out of me. Not sure if it was the enema solution or the real thing. Depends definitely came in handy for the beginning but I was able to hold most of it until I got to the toilet. Continued BMs the next two days and was released from the hospital on Fri. Some BMs on Sat and Sun. No BMs on Mon. Woke up Tues at 3 am with severe chills and stomach pains (my stomach was very swollen and I'd lost so much weight that my husband described me as one of those starving children you see on TV). Took my temperature a few hours later and had a temp (about 100). Doc (by phone) suggested a liquid diet and a Thurs appointment. So sick on Wed that we moved doc appointment to that day and was admitted to the hospital for x-rays. They thought I had an infection or blockage but it turned out to be ileus (when your guts just don't want to function). I did have plenty of grumbling and stomach acid so they weren't too concerned. I left the hospital on Fri (2 days) after begging to be sprung so I could recup at the beach with family for a week (that was my 4th admission this year and I'd had enough of the hospital). Doc originally wanted me to stay because I wasn't healing as fast as I should have been and hadn't had a BM. Stitches are supposed to come out in 7 - 10 days and my stoma hole/4 staples area wasn't showing a lot of progress. They ended up taking out the staples and putting on surgerical strips.

The week at the beach was perfect for recovery. I was able to take lots of walks (very helpful!) and lay on my stomach (dig hole in the sand for wound area). I thought maybe all the meds were contributing to my problem so I primarily only took Gas-X, Tums and a probiotic for the week. I didn't have a BM until Sunday night and got cleaned out Monday and Tuesday. (Believe me, I did enjoy the no BMs for a week! ) BTW, I hear nature is supposed to help with healing so get outside when you can.

The swollen stomach is gone, my appetite is back and my stoma site is healing really fast now. It's almost closed up and started out about the size of a quarter. My biggest issue is fatigue. Most days I need to rest/take a nap every afternoon or go to bed really early (though some days I go to bed at 9:00 and then wake up at 5:00 and can't go back to sleep). I wake up 1 - 3 times a night to go to the bathroom (most of the time just pee - must be all the water I'm drinking or my colon finally sucking water out of waste but other days, my body picks 3:00 to empty out the days food). I'm thinking I will have more energy once my wound heals over completely. I hear it takes a lot of energy for the body to heal. For awhile my diet was primarily BRAT-based but I'm now eating all kinds of things. I have noticed some things like coffee and tomatoes are hard to eat. Haven't tried alcohol yet but am starting to crave a glass of wine - must mean I'm feeling better. :o)

Aside from the ileus pain, pain hasn't been a big issue for me. Once I left the hospital the second time, I was off the pain meds and don't even take Tylenol. Gas and stomach acid/noise/discomfort has been my problem. I take Pepcid twice a day and GasX once or twice a day. Tums once in awhile. I also take a probiotic once a day. I haven't been able to take vitamins since they bother my stomach. I've just started taking 1/2 of a Flintstones chewable and have been able to tolerate that. I tried Immodium once (diarrhea is rare for me now), and didn't go for 2 days. When I went, it emptied everything out. I also tried the Metumucil wafers that you all recommended - yuck! How do you eat them?? I ate 1/2 of a cinnamon one and it tasted like cardboard. It also cleaned me out.

In terms of BMs, I go about 0 - 8 times a day (usually about 3 - 4 times). When I go, I'm usually in there for a little while since it comes out in small amounts. Not to be gross but I get really excited when a long one comes out. They are still on the thin side. I don't have a problem holding it in and once I leave the bathroom, I'm usually good for a few hours. I do have problems with gas when eating (from both ends which is strange because I never used to burp much).

Urgency doesn't seem to be as big as issue for me - probably because of the j-pouch. I do get butt burn sometimes and use Aquaphor. I also get occasion wet farts. I wear panty liners to protect from the farts and Aquaphor.

I'm still losing my hair which I asked my onc about. She said that it's not the chemo at this point but probably malnurishment. My body has been through a lot in the past 5 months (hospitalized for almost 3 weeks in order to complete radiation) and I've been on the BRAT diet, no/little food, or liquid diets (with no vitamins or nutritional supplements) for most of the time. My goal is to get as healthy as I can over the next month so I can start 8 rounds of FOLFOX on June 14th. That includes food, exercise, sleep and low stress (I've been out of work since December and I'm not going back until I see how I react to the chemo).

All in all, so far I'm glad I had the reversal when I did. I'm starting to feel more like a normal person. Good luck to others planning their reversals! Hope this info is helpful to you.
Stage II CC 8/08 Sig Col - 0 of 25 LN, no met
Recur 10/09 Stage II Rectal; 12/09 25 rad and 5FU; 2/10 - LAR with J-pouch and Temp Ileo (NED - tumor gone, 0 of 9 LN, no met); 4/10 - Rev Ileo; FOLFOX (8 cycles); 10/10 port removal
5/11-NED!
F, age 43

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: How are you doing after ileostomy reversal?

Postby Surroundedbylove » Sat May 22, 2010 8:35 am

Jon Olis wrote: Soluble fiber is stuff like bananas, white bread, pasta, potatoes, rice. Insoluble fiber is stuff like raw veggies, wheat bread, whole grains, etc.


I just wanted to add to this. Soluble fiber has been the "magic trick" for me in my adaptation. Excellent soluble fiber sources for me have been apples (if the peel bothers you because it is insoluble, then just peel the apples), date, and sweet potatoes. The best combo for me is oatmeal in the morning with chopped dates or chopped apples added, along with an Activia yogurt (or Greek yogurt with probiotic powder added); a lunch with a sweet potato roll instead of regular bread for the sandwich, an apple, a lean protein source); a couple of dates for a snack; and then varied dinners, frequently with rice as the starch. I added insoluble fiber slowly and one type of food at a time to see how my digestive system would adjust. I can eat most anything now - just have to plan accordingly if I'm going to have much insoluble fiber.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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Jon Olis
Posts: 252
Joined: Mon Jun 02, 2008 3:04 pm
Location: Laguna Niguel, CA

Re: How are you doing after ileostomy reversal?

Postby Jon Olis » Sat May 22, 2010 9:49 am

Thanks for the thorough write-up TooYoung. I think your candid descriptions are really helpful to the new people dealing with similar issues. FYI, if you're peeing a lot, that's a good sign that your body is abosorbing the liquids and doing its job. My experience is the metamucil wafers also help reduce acidity of the stools which helps with the butt burn. I don't think they taste that bad. Try putting a little peanut butter on them.

After one of my surgeries (the last one) my hair fell out on the back of the head in a 1" x 2" spot. It was weird. It was like all the lying in bed had killed the follicles. Took a while for that spot to grow back again. Surgery puts our bodys though a lot. Lack of eating and lack of activity are good.

Oh, and I can't believe you could lie on your stomach that recently after a surgery. Hole in the sand or not, I would have had a hard time with that.

Hope things continue to improve for you.
Jon Olis
2009 Colondar Model
Diagnosed 6/04 Stage III CC, 7/16 Nodes, FAP
Subtotal Colectomy 6/04 failed,Ileostomy 6/04
Folfox
Ileostomy Rev 1/05
Laser Endoscopy 8/05 perforated duodenum
Emergency surgery to repair perforation
Currently 9.5 years NED!

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Airmid
Posts: 67
Joined: Fri Feb 05, 2010 9:26 pm
Location: Ontario Canada

Things really do get better post reversal!

Postby Airmid » Sun Jul 04, 2010 8:23 pm

FOUR MONTHS POST REVERSAL
Where does the time go? I've been on here reading everyone's posts but I haven't posted in a while and thought I'd give an update on how I'm doing.
Things have been steadily improving. Most days I only use the bathroom twice a day around breakfast and dinner and I have less clustering at those times, but it still takes 2 or 3 trips to the bathroom. I sleep really well through the night uninterrupted by night bms that I had a couple months ago. I no longer have 10 bms and then for the next couple of days I only have 3 bms. Now I have about the same number of bms a day.
I can now get through a meal without having to run to the bathroom like I was a couple of months ago. I've been able to go out to eat in restaurants which has been nice. The last time I needed immodium was over a month ago. I eat almost any foods I want but just make sure I eat a combo of soluble and insoluble fiber foods. When I want to eat some spicy thai or mexican food I just eat a smaller portion and balance it out with plain rice or bread.
I take metamucil 3 times a day. Sometimes if I forget to take the metamucil at one of my meals it really makes it difficult having bms the next day. I never did need to take the prune juice recommended as part of the MDA bowel management program.
I've been back to work for about a month now and most days I manage to have bms before and after work.
Best of all in the last few days I've stopped counting and measuring food in-poop out. I'm adjusting to my new normal and feeling like I'm getting my life back--not too bad for 4 months post reversal. :D
The next thing will be to see how well I travel with my new plumbing. I'll be going to Panama for my daughter's wedding in the next couple of weeks. The last vacation I was on I still had my pouch and for much of that trip I was unable to use the washroom because there was a lot of turbulence during the flight. I'm hoping the flight to Panama will be a smooth one. It's going to be a long day of travel to get there--12 hours. The last two hours of the trip will take 2 hours on a bus that has no bathroom. I won't be eating too much and may need to take immodium to get through the day.
Thanks again to everyone for all the encouraging words and advice that helped me get through that difficult time just after reversal.
Airmid
02/08 DX-mCRC, liver mets
03/08 Xeloda 6wks, Radiation
06/08-LAR, Temp Ileostomy
10/08 Folfox 8 treatments
04/09-Liver resected
05/09 5FU 8 treatments
02/10 Ileostomy Reversal
11/11 CT Scan NED

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BrownBagger
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Re: How are you doing after ileostomy reversal?

Postby BrownBagger » Mon Jul 05, 2010 8:31 am

Good luck, Airmid. Sounds like you're doing great. I also found Metamucil to be a big help--for the same reasons you stated in the other thread. Funny--last night I clustered for the first time in about 2 months. Just like the good old days. I'd been constipated for a few days, then something let loose and I spent most of the evening returning to the bathroom. No big deal; today everything's fine.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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Jon Olis
Posts: 252
Joined: Mon Jun 02, 2008 3:04 pm
Location: Laguna Niguel, CA

Re: How are you doing after ileostomy reversal?

Postby Jon Olis » Mon Jul 05, 2010 8:48 am

Wow, Aramid, you are doing great. When you're going to be in a situation you are unsure of (like the bus ride), just take the Imodium as a precaution. I don't really think there is a downside to doing that. Good luck.
Jon Olis
2009 Colondar Model
Diagnosed 6/04 Stage III CC, 7/16 Nodes, FAP
Subtotal Colectomy 6/04 failed,Ileostomy 6/04
Folfox
Ileostomy Rev 1/05
Laser Endoscopy 8/05 perforated duodenum
Emergency surgery to repair perforation
Currently 9.5 years NED!

Irene

Re: How are you doing after ileostomy reversal?

Postby Irene » Wed Jun 15, 2011 9:24 pm

Hi Ihave never wrote to ayone about my ileostomy or the reversal. I did not have cance, but had divirticuli for many years throughout my intestines. Many bouts of infection, hospital stays 5 days at a time on just inravenous and antibiotics.. Then plagued with stomach blockages, why don't know. Had surgery for a small resection, but contracted a terrible infection, was hospitalized for 10 days and came home with a drain in my belly. Not fun. Then started bleeding, going to hospital back on intravenous and waited till it stopped. That happend about 3 times. Then from scar tissues had a blockage and had to be operated on and also for a belly hernia. That was 2 yrs ago. Last year had too much bleeding from divirticulitis and it was not stoppint, had many transfusion and platelets. Was operated on Easter night woke in icu with a pouch. Was reallly ill and then my inners reject it and I vomited for many days and had diarrhea for ever. was in for over 3 wks. finally home and in the end of May went in because I started to bleed again. Went directly to icu and was there for 5 days. Had a reversal 4 mos latter, very veery thankful, but i need immodium twice a day sometime 3 times a day. Fiber is not too good for me, some dairy and sauces also. I eat too many carbs and have gained 20 lbs. which I don't like. How can i lose weight with all these carbs. Does any one know. Thanks for reading. oh now I have a lot of muscle cramp in my belly on both sides.. I fear that something will happen soon in there.

Anthony 9/11 cancer

nervous

Postby Anthony 9/11 cancer » Thu Aug 11, 2011 8:15 pm

Hello everyone, I am new to this. I was diagnosed with stage 3 colon cancer in April of this year. I went through chemo and radiation for 8 weeks and then to surgery. I had 7 inches of my colon removed and I got a temp ileostomy bag for 8 weeks. I have 11 days to the reversal surgery and I have an abscess near the stoma. My surgeon put me on cipro and its not working. Will the surgeon still do the reversal surgery? I see him in a few days so he can check the abscess before surgery, but I dont want the ileostomy bag anymore lol. I am hoping he will do the surgery and clean the abscess out followed with IV antibiotics. I hope I am not dreaming. Any help will be greatly appreciated.
Thanks,
Anthony

pabl
Posts: 185
Joined: Thu Mar 25, 2010 9:41 am

Re: How are you doing after ileostomy reversal?

Postby pabl » Fri Aug 12, 2011 8:44 am

I would suggest taking probiotics and psyllium (see my post about solving the poop problem) right away to repopulate your good bacteria and keep your stool consistent and smooth. Hang in there---it takes some time to get back to "normal".
RC 8 '09 at 45 y/o
Stage 3, 2 nodes
9 '09 rad and xel.
2 '10 resect, temp. ileo
3 '10 started 8 rounds Folfox, finished 6.
9 '10 ileo reverse
CT Scan---missed a 2 mm lung met (Jan '11)
Grew to 1 cm till yr. ct scan---VATS (Jan '12)
NED

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: nervous

Postby BrownBagger » Fri Aug 12, 2011 8:51 am

Anthony 9/11 cancer wrote:Will the surgeon still do the reversal surgery?


I don't see why not, since the bag appears to be causing the problem. But obviously, that's just WAG speculation on my part. Like you, I'd want it taken down as soon as possible.

If they can't close the wound (it's not an incision, but more of a cookie-cutter situation), which is common, then you will need to dress the open wound (and fill it with wet gauze) twice a day for about a month before it heals over. That's less work than maintaining an ostomy, but it's still no fun walking around with a hole in your abdomen. Takes some getting used to. I suspect the abscess will complicate that in some way.

Good luck!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

thelongglass
Posts: 51
Joined: Mon Jan 24, 2011 5:47 pm
Contact:

Re: How are you doing after ileostomy reversal?

Postby thelongglass » Fri Nov 18, 2011 10:38 pm

Wow, folks, what a wealth of information on these five pages of posts! Holy cow! My reconnect was one week ago and things are going way better than I expected. I have been out of my house a few times (during the day I have very little going on in the way of BMs). Mostly morning and and evening action. That being said, I am on the lookout for constipation rather than diarrhea, probably because of the percocet. My belly and muscles are so sore, I am worried about the strain if I get constipated. Was heading that way, but had a big spinach salad, and oh my goodness, that evening I was in and out of the bathroom a handful of times in a half hour. Flush of the toilet, splash of hand sanitizer, back to the couch to resume sitcom with hubby, and ten seconds later, "Pause the show!!" I was gingerly jumping up and back to the toilet, repeated three times. Kind of comical. What dwas i expecting five days after reconnect?! I kind of wanted a clean out, but that was a bit more dramatic than I expected. Lesson learned on that count.

So my real question is about this big open cave wound on my belly. I pack it twice a day and the stitches just gave way on one section, so I have a semi-drawstring, puckered wound now... So weird. How long til it fills in?? What do I watch out for? It is really sore. Do I need to be cautious with straining, lifting because of the weakened abdominals?

Thanks.
http://thelongglass.wordpress.com
12/22/10- Diagnosed at 30 yo
Rectal Stage IIIB, T3N1M0
1/11/11- 25 doses radiation w/ 24/7 5FU pump
4/8/11- LAR-Complete Response to Therapy!
5/13/11- 12 treatments of FOLFOX started
11/11- ilestomy reversed, port-a-cath removed
NED since
Mother of 3 beautiful little girls


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