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Digestive Issues after Ostomy Reversal

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Digestive Issues after Ostomy Reversal

Postby Denise » Mon Nov 17, 2008 12:10 pm

I was diagnosed with rectal cancter in Feb (age 38), went throug 6 weeks of chemo & radition followed by surgery & an ostomy, followed by the ostomy reversal in Sept. I am looking for advice on when, how, if things return to normal after the ostomy is reversed. I appears that since the reversal, eating dairy or fruits or veggies gives me diarrhea, and, unfortunately, I can't really hold it.

Any recommendations on when & how to re-introduce fruits, veggies or dairy?

How long does it take to get back some level of normalcy?
Denise
 

Re: Digestive Issues after Ostomy Reversal

Postby Gaelen » Mon Nov 17, 2008 11:25 pm

Denise, I've had my (permanent) ostomy since Feb. 2005, and had two additional abdominal surgeries, four types of chemo and one round of radiation since it was put in.

After *each* surgery, it's as thought my guts go on strike. They decide I've lost my mind, have no idea what to eat, and hyper-react to everything. I have to go back on the low residue, low variety initial ostomy diet every time, and gradually reintroduce new foods (one new food every week or so, for about two months, until I can build up some tolerance.) When I left the hospital each time, I could reliably eat: eggs (scrambled), cheese, chicken broth with shreds of chicken in it, plain unsweetened yogurt, smallllll portions (a couple tablespoons) of mashed or baked potatoes with a little real butter, small portions of raw/stewed tomatoes, and a third of a medium-ripe banana. And decaf tea, and small amounts of V8 or orange juice. And whey protein powder, mixed into dilute juice or cold decaf coffee and some of the plain yogurt.

Within a week, I could add in a little mashed sweet potato or squash, a couple tablespoon serving of cream of wheat made with cooked half and half or whole milk, chicken that wasn't shredded, turkey, shredded beef or pork. I had much more success faster adding in proteins than any other food group. I couldn't do raw veggies, raw fruits (except a little melon and the banana), nuts or seeds for about three months this last time. It's November, my last surgery was in April, and tonight I ate some kernels of popcorn (!). I have been eating salads once or twice a week (a small salad...about a cup and a half) for about two months. I can eat soft nuts (walnuts, pecans, chunky peanut butter) and seeds (hulled pumpkin or sesame seeds) now, but that's only been the last couple weeks.

Hope this helps.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: Digestive Issues after Ostomy Reversal

Postby kimby » Mon Nov 17, 2008 11:41 pm

Denise,

I had my colostomy reversed in May. It really is a struggle to get to a more normal diet, but I don't think I'll ever be where I was 'before'. I take a very high quality probiotic which seems to help more than anything. You need the ones that require refrigeration. I agree with Gaelen about the low residual diet. That is where you need to start. I do eat fruits and veggies now, but do best if they are cooked. I eat salad often, but I have to eat smaller ones and prepare for the effect. Some people develop lactose intolerance through all of this, so that is touch and go.

Control is a whole other topic. Getting that sphincter working correctly takes time. The level you achieve varies widely by person. I was prepared to have a permanent colostomy if my reversal failed. Some people decide they would rather wear diapers. I have done Keagles since my resection in anticipation of reversal and I believe that helped. I still do them and my control is excellent - at least as good as before my resection. I will never know if it really made a difference or if I am just one of the lucky ones.

I hope this helps some,

Kimby
DX colon canzer 8/07 age 43
Endometrial Cancer 3/03 age 39
FOLFOX 10/07,Folfiri w/Erbitux 9/08,Mitomycin/Avastin/Xeloda 1/09, external beam liver radiation 2/09-3/09,LN 8/09
mets: liver/celiac LN
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Re: Digestive Issues after Ostomy Reversal

Postby alisa » Tue Nov 18, 2008 5:00 am

Hi :) I just had my ileostomy reversed 2 weeks ago. I agree with all Kimby said above. I had some VERY severe cramping for about the first 10 days, but now I am getting back to normal, for both control and food tolerance.

Also, there are alot of rice products out there to replace dairy and gluten, which can both be hard to digest. Rice milk, crackers, bread, etc..... are all good and much easier to digest :) I'm happy to help you with more diet ideas if you'd like!
Stage IV rectal cancer
Mets to liver (13-14), lymphnode (1) and lung (1)
Dx: June 07, at 29 years, 4 days after 1st child born
Chemo: Oxaliplatin, Irinotecan, Xeloda
Strong believer in CAM
Total protocolectomy FEB 08
Ileostomy reversal Nov 08
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Re: Digestive Issues after Ostomy Reversal

Postby CureCRC » Tue Nov 18, 2008 9:18 am

I am exactly 6 months since my ileo reversal post rectal cancer Dx March 2007. I had 28 radiation days with 5FU, followed by LAR with TME, and 6 months of Folfox 6.

First couple of weeks are very unpredictable. Was hard to leave home and feel ok about it. However, that gradually changed as my body began to adjust and I felt more confident with my body's signals. At first, it is a good idea to eat a low residue diet...not a lot of fiber at first and then gradually introduce soluble fiber - e.g. peel your apples, eat vegetables that are low in insoluble fiber (well cooked carrots are good, lightly cooked broccoli is not) Stay away from alcohol, greasy spicy foods for a while until things settle and then use moderation.

I found that taking Immodium ( use the chewables) and Metameusil wafers (available at most drug stores) are very good to help regulate and slow things down. Be sure you are getting enough water each day while you are working on regulating and retraining your bowel. For the first few months, I would avoid gas producing foods to help control "urges".

Here is a link to a very useful article on bowel re-training from MD Anderson's department of Colorectal Surgery

http://www3.mdanderson.org/depts/hcc/su ... rticle.htm

It is normal to have "clusters". Example, you don't go to the BR for 12-24 hours and then go 6-8 times over 2-3 hours, because you no longer have a reservoir and so transit of stool takes time for you to fully evacuate. My surgeon told me that it is normal for things to keep adjusting over the first year.

A couple of things I found useful while going through this process

keep a food diary so you can tweak things to work for YOUR body. EXPERIMENT - especially after the first couple of months. Eating frequent small meals and one bigger meal at the same time, if possible, will help. I try to do this as much as possible. Exercise is really good to settle things down.

Feel free to get in touch with any questions

CureCRC
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Re: Digestive Issues after Ostomy Reversal

Postby kimby » Tue Nov 18, 2008 11:41 am

I also failed to mention in my previous post that I am on Lomotil and used Immodium for quite a while post-reversal. I have used Lomotil since my resection but I've been either recovering from surgery or on chemo since so I'm not sure if that will be premanent or is due to treatment.

Kimby
DX colon canzer 8/07 age 43
Endometrial Cancer 3/03 age 39
FOLFOX 10/07,Folfiri w/Erbitux 9/08,Mitomycin/Avastin/Xeloda 1/09, external beam liver radiation 2/09-3/09,LN 8/09
mets: liver/celiac LN
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Re: Digestive Issues after Ostomy Reversal

Postby salysue » Wed Nov 19, 2008 10:15 pm

I didn't start this post, but I want to thank everyone who responded for all the great information. I'm going to print this out for reference. My husband will hopefully have his ileo reversed in a few months. I realize that everyone is different, but I'm sure this info will come in handy.
Husband diagnosed 2/7/08
Stage IIIA RC
2 nodes positive out of 29
5FU and radiation
Surgery 6/10/08
6 months Folfox ended 12/31/08
Ileo takedown 2/12/09

ONE DAY AT A TIME!
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Re: Digestive Issues after Ostomy Reversal

Postby Denise » Thu Nov 20, 2008 5:23 pm

Thank you all for the great info! :D
Denise
 

Re: Digestive Issues after Ostomy Reversal

Postby pam » Tue Dec 23, 2008 7:33 am

hi can anyone help me? i have just had my ileostmy reversed 7 days ago and im still in alot of pain, i want to start eating but dont knoe what to eat, can anyone advise me on the best foods to eat?
pam
 

Re: Digestive Issues after Ostomy Reversal

Postby CureCRC » Tue Dec 23, 2008 11:41 am

pam - it is very important to get a consult from the dietician at the hospital, if you can. They will recommend the right foods to eat at different stages of your adjustment...it is important to respond to your body's "personal adjustment"...that is, fine tune your diet based on how it reacts to certain foods. Stay away from insoluble fiber for now (fruit skin, salad) stay with soluble fiber (rice, whole grain bread, sweet potatoes etc..) there are plenty of good resources on the web to help you there.

It's a slow process for many, but it DOES get better over time. Talk to your Dr. about using Immodium and Metameusil to slow things down as needed....eat more fruit and avoid constipating foods like processed breads, crackers, cookies at first, especially if you are not passing stool...Try keeping a food diary so you can remember what caused a good result and what didn't, at various stages of recovery...

Hang in there - it gets better with time

dx 3/07 stage 3 rectal cancer
28 days 5FU/radiation
LAR with TME and lymph nodes removed
Temp loop ileostomy July 2007
downstaged > stage 2
24 weeks Folfox 6 completed 3/08
takedown 5/08
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Re: Digestive Issues after Ostomy Reversal

Postby Gaelen » Tue Dec 23, 2008 12:30 pm

This is a link to a typical low residue diet. http://www.wchob.org/gi/low_residue_diet.asp
It's more or less the one I was on in the hospital.

Since I also control (strictly limit) carb intake to avoid other issues, I avoided most breads/grains as a matter of course on this diet (the one exception was a small amount of cream of rice or wheat hot cereal, especially in the beginning.) That said, make your choices from the allowable proteins, fats, and cooked fruits/vegetables.

The other tips/rules for figuring out your new diet:
1. Write down what you eat, every day.
2. Start with a small list of foods that work and gradually expand on that list (for me, poached chicken, broth, cooked tomatoes, V8 juice, small amounts of plain yogurt, cooked squash and butter all were fine right off the bat. I could also tolerate cooked cream of rice or wheat cereal, about a half-cup at a time.)
3. Only add one new thing every four to five days, to be able to isolate what is working/not working. If you add things more frequently than that, since your digestion is altered you may not be able to tell what set things off.

Hope this helps.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: Digestive Issues after Ostomy Reversal

Postby raiderdom » Tue Dec 23, 2008 1:23 pm

This topic is hits home for me very much. I am actually in my hospital bed as I type after having my illeostomy take down procedure on
Friday. I have been on solid food since yesterday and am being discharged today. My take down was Friday, I started having gas and signs of activity by Saturday morning and had my first BM on Saturday night. BMs have been frequent so far with nothing much in the way of solid matter as of yet. I will deffinatley use a food journal and keep posting here to share information. I am told that so far, I have been moving along at a higher end pace. I was diagnosed with a colorectal tumor in December of 07. I had 28 radiation treatments along with oral chemo pills, (Xeloda) through the end of Febuary. Major surgery with temp illeostomy in April and was in the Hospital for 11 days. I finished 9 treatments of follow up chemo 5FU, F-Fox and Lucovorin that ended in October. I am ending this almost exactly one year after I started. I know that the next chapter is just starting.
Merry Christmas to all and the best to you and your families.

Dom Covarelli
Discovery Bay, CA
46 years old
Stg III Rectal Cancer DX 12/08/07, 3cm tumor
28 Rad Trtmnts + Oral Xeloda Chemo 1/08-2/08.
Tumor, 10 Lymph Nodes, Rectum Removal +illeostomy 4/25/08
9 trtmnts Folfox, 5FU, Leucovorin, Oxaliplatin 10/08/08
Take down 12/19/08
March 2010 Colondar Model
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Re: Digestive Issues after Ostomy Reversal

Postby LisaKaye » Sat Jul 17, 2010 9:37 pm

my husband had ileostomy reversed 4 weeks ago. He had stage IV rectal cancer diagnosed last Oct. Just finished all treatments (radiation, surgery, chemo) Developed post op ileus- his bowels had a hard time waking up and getting active. Was in hospital for 10 days. Since being at home he's used imodium for the stool stacking or clustering but when he does, it seems that bowel is slowed down a lot and when the motility begins to pick back up the cramps and abd pain are miserable, lasting for hours, ending up with diarrhea. He's been careful with diet eating mostly low residue. Takes citrucel at night. Any one had experience with these extremes and what has helped. Would greatly appreciate any suggestions. LisaKaye
LisaKaye
 

Re: Digestive Issues after Ostomy Reversal

Postby Gaelen » Sun Jul 18, 2010 5:54 am

LisaKaye, my colostomy is permanent - but during several chemos which are known for causing diarrhea, and/or constipation, neither of those things were ever really a big problem for me after I started doing these things:
- pay attention to your food journal. If something causes diarrhea or constipation, NOTE that and (this is the hard part) stop eating those things until you need them.
- pay attention to portion sizes. I can manage a cup or so of raw salad vegetables once a week - no more often.
- lay off the extras and the meds and try, when you can control your environment, to use the foods that loosen you up or constipate you to do what the meds and OTC fiber say they'll do. Molasses (1/2 to 1 tablespoon) is far more effective at loosening me up than stool softeners. Cheese or rice is far better at tightening me up without cramping or risking a blockage than Immodium.

Don't get me wrong - I used Immodium and stool softeners, too - but never took OTC fiber and I could only take 1/2 to 1 Immodium in a 12-hour period or I'd block up. What I did may not work for people who aren't as sensitive to meds as I appear to be, but the old 'let thy food be thy medicine and thy medicine be thy food' has, overall, been a lot easier on my guts and gotten me to a place where I have very good control of my output with a lot less physical stress and virtually no bag leaks.

And the reality is that, as many of us have noted in this thread (which is a year or so old), someone who's had intestinal surgery may NEVER be able to eat exactly or even close to the way s/he ate before surgery. And deviating from that will cause accidents and gut issues. It's one of the parts of cancer that keeps on giving.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: Digestive Issues after Ostomy Reversal

Postby BrownBagger » Sun Jul 18, 2010 7:29 am

I'm about 10 months out from reversal and my digestive function has pretty much returned to a near-normal state. It's not the same, but for all practical purposes, it's very similar. The first two months were kind of rough. After that, things gradually improved. I found it helpful to measure my progress week-to-week rather than day-to-day. It can be a rollercoaster ride. As others have mentioned, what you eat, when and how you eat it has a big impact on how your new, improved body works. Good luck!

I should add that I still get occasional episodes when things don't go as well as I might wish. I've been clustering over the past 24 hours, for example, probably because of the two spicy meals I had recently. I'm thinking it might be a good time to break out my old friend, Imodium.
Eric, 56
Dx: 3/09, Stage 4 RC
Recurrences: (3/lung)
Major Ops: 5
Chemo Rounds (career): 80
Bicycle miles post-dx 10,346
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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