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Hello All:

First I want to thank everyone for all their thoughts, prayers, encouragement and advice.  Everyone has been extremely helpful throughout this ordeal.

Background: 72 year old with ulcerative colitis.  Step I--part of colon removed because of blockage, stoma installed.  Step II--complete colon removal, stoma closed, ileostomy. Step III--J-Pouch developed.  Step IV--takedown. 

I had my takedown on Feb 4th, a little over one month ago.  I saw my surgeon and my gastro doctor last week.  They both believe I am on the right track.  I will not bullshit anyone, it has been a rough month.  But day by day I feel stronger and am adjusting to this new plumbing system. 

Some of the problems I am experiencing have been:

  • Not being able to tell the difference between passing gas and stool.  When I try to pass gas sometimes I end up passing stool.  I am hopeful this will improve. Does Gas-X help?
  • On some days I am passing stool 5-6 times a day.  On other days I pass stool 3-4 times per day.  I have found that my stool is not quite pasty like peanut butter, but not totally liquid either. I have been using Metamusal.
  • When I eat food that does not agree with me (I have not yet figured out which food is agreeable and which is not) it feels like I have a knot in my stomach for a long time, but eventually goes away. I am using Zantac.
  • I have a lot of gas pains, especially at night and when I try to pass only gas, unfortunately sometimes stool comes out. I have been wearing diapers.
  • But burn has not been too much of a problem and I have been using lotions to sooth the burn.

I hope I have not bored you all with the problems I am experiencing but just wanted to know if any of you all have experienced the same and any corrective actions you have been taking.

Thanks again for all your help.

Nick

   

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Hello, Nick10136.

It's nice to know you are doing well after one month. I manage consistency and frequency with food and it works really well for me. I haven't used any fiber supplements since shortly after takedown. There are times when I "produce" perfectly formed normal stools, as if I had a perfectly healthy colon! I eat lots of roasted zucchini and, believe it or not, lots of roasted Brussels sprouts, and soluable fiber foods. Lots of basmati rice, or plain white pasta with chicken and pesto sauce, or just a drizzle of good olive oil, salt and pepper. I cook all vegetables, can't eat anything raw, and avoid and nuts and seeds because they don't break down for me, but I eat anything I want, including spicy foods. I am 3 years old. It took almost a year before I felt like I mastered the new life. I follow (most of the time...) food recommendations for diabetics because I am diabetic, and it works 95% of the time. It's very low sugar, low carbohydrates, low fat, high fiber, proteins. The 5% is when I've fallen off the wagon into a carrot cake.

Your j pouch will mature. What used to be part of your small intestine needs time to learn to behave like a colon. As far as passing gas, I don't think any poucher can do that standing up, although my ostomy nurse in hospital told me that the body (and the muscles back there?) instinctively learns what is gas and what is stool and knows when to hold on. She was right. It's okay when you make a small error. It sounds like you'll be fine.

Wow -- congratulations Nick, you are doing great! Your frequency is better than average, especially after a month or two! As for the Gas X, it didn't really help me much, so I only ended up only taking it if the gas was painful -- I think it helped pass it. Even as my system "matured" it was never able to pass gas like with a colon... but that is pretty typical.

I didn't have acid reflux issues, so I never took Zantac and don't really understand why that would be prescribed for your stomach knots. Could it actually be mini blockages? I got them after multiple surgeries and my doc and I have written off a lot of that pain and discomfort to post-surgical adhesions limiting colon movement. For immediate help if the gas is not improving, I'd recommend looking up "gas causing foods" to see what happens if you eliminate those from your diet.

I did take Imodium (or prescription Codeine Sulphate when it was bad for a while) for liquidy stools, but it doesn't sound like you need that. I would recommend keeping Imodium on hand just in case though. A concern now, should you eat something that does give you liquid stool, is taking that and staying hydrated because you can dehydrate so quickly without a colon. 

It does take a little while to figure out your personal food list -- what is tolerated well vs what is never tolerated vs what is not tolerated well but eaten anyway :-) But even when you do figure it out, consider trying some "borderline foods" again in 3-6 months as your system is adapting and your colon tissue will change. The recommended early "short list" of things to avoid at first is raw fruits and vegetables, nuts & skins cooked or not, and highly spicy or acidic things...and chew, chew, chew! Other than that, a lot of people with pouches find that sugar can be a problem for them, but it seems to be one of those things that might be 50/50 (likely dependent on the individual and their intestinal/pouch microbiota.) I would say the same goes for probiotic supplements as well, some swear by them while others swear off them. 

Blessings for a healthy road ahead, Jennifer

 

Last edited by JenJen

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