Long time poucher needs some guidance please!

I haven't posted anything on this forum in quite a while, but I have been lurking here on occasion and still get excellent tips from some of you now and then.

I had j-pouch surgery in 1991, and lived with very frequent trips to the bathroom in return for eating practically whatever I wanted. No meds for me, not even OTC ones. Fiber gave me too much gas and made things worse. Immodium made it harder to empty, so no net benefit. Pepto also did more bad than good. "Super Digestive Enzymes" does seem to help reduce gas somewhat. Night leakage was my biggest problem, although daytime continence wasn't perfect either.

Symptoms got worse for me last year. I thought it might be pouchitis again, and I finally went back to the clinic to try to get serious help. The scoping always hurt a lot, especially going in, so I had resisted getting one for years. My surgeon saw how very bad my pouch was, prescribed Cipro and it worked wonders right away. After several days, my pouch functioned better than it had in years. After 2 weeks we stopped the Cipro, and the symptoms came right back. I went back on Cipro, then we switched to Flagyl (which I had had in the past but it didn't help much) and I was doing OK.

However, my new gastroenterologist, who had attended my (quite uncomfortable) scoping and took over my treatment, believed he saw some signs of "CD of the pouch". He ordered some lab work and the results did point to CD. I was never diagnosed with CD while I had a colon, and really didn't want to hear that, but my brother got IBD much later in life than I did, and his diagnosis was "not clearly UC". He does well on Remi, and my Dr. suggested Remi for me instead of long-term antibiotics, despite the fact that antibiotics were working well for me (except that my tendons began to hurt a lot while on Cipro after several weeks).

So now I've been on Remi for several months and am doing extremely well -- went from using the toilet typically 10+ times per day, plus 1-2 times at night, often with that many leakages, down to 5-6 times per day with maybe 1 trip at night, but often no leakage. It was never this good for me in the 21 previous years with the pouch. I guess I had had low-grade inflammation from day 1 which flared up now and then, but always gave me symptoms that certainly impacted my daily life.

I obviously hope to stay in this good state long term. We have not had to increase the Remi dosage, and I have had no side effects so far. I was worried about that after reading on this forum that many of you have had problems with Remi and little help from it (after about a yr in many cases). I'll have another scoping in a few months to determine whether the Remi is really justified (for insurance purposes). I mentioned my concern about the discomfort to my Dr., and he offered to use brevital to sedate me during that procedure, which sounds good to me.

In the fridge, I still have a supply of VSL #3 that I bought OTC to see if I could stay in remission after that first and second round of Cipro, as described in the medical literature in papers by Shen and others. It may well have helped me on the second round, but I took even more than the 2 packets a day used in the studies while also on the Flagyl, so this is just an anecdote. Since it's rather expensive (and there's no way for me to get a prescription for the double strength version), I am using the remaining VSL#3 as yogurt starter (1 capsule per 42 oz of milk), and let it incubate for 15 hrs in an attempt to multiply at least some of the beneficial strains of microbes as much as possible without making the taste too acidic. This does make a decent tasting yogurt, and I eat at least 6 oz every day with fruit and granola.

Why not take more Imodium? It is like having the GI effects of opiates, without the analgesia and sedation. I took 8 a day for years and years, and only reduced gradually to 4 a day in the past five years or so.

Jan

Ive tried more imofium but it doesnt seem to really make a difference, other than making it a little harder to go and it gets painful because of it . I just want to slow it all down a lot more. I frequent the bathroom and i just feel it can be better somehow.or at least hope lol.

Have you tried varying your diet?

I was miserable for over a year as I couldn't eat salad or much veg, and was desperate to lose weight, which would have been helped by eating salad and veg. I decided to just 'go for it' 7 weeks ago. The diet I chose was no wheat at all for 2 weeks ( you can reintroduce small amounts from 2 weeks on,however I am trying to avoid it still as my system seems much better without wheat.)
The diet is no sugar, no alcohol, low fat, and no eating carbs after 6pm.I eat salad most days, quite a lot of fruit and veg and feel better than I have for a long time. It's slow going, weight-wise -I have lost 9.5 lb in 7 weeks, however my pouch is much happier and bathroom trips during the day are down to 2- which for me is miraculous, as I am also a nurse working on community, so bathroom visits are difficult.

My post may be identical to SueH's post. I varied my diet over the years...My pouch is 21 years old and has for the most part been healthy!

Through the years I found that diet was the key. I like Sue, eat no wheat (wheat is the enemy), no sugar, little to no salt but the elimination of wheat and for me and most carbs has made a huge difference for my pouch.

I load my day with organice fruits and veggies but only in raw form since cooking seems to create more issues with the pouch. You tend to lose the enzymes during cooking and we especially need all the enzymes we can get. I also eat tons of Greek yogurt for the good bacteria and lots of all natural seed and nut butters like almond, pumpkin and sunflower seed (these help with binding). I don't take any drugs for my pouch function. I tend to only drink alcohol on special occasions. I also take a spoon of organic apple cider vinegar before each meal as I find it helps with digestion.

I truly believe with a clean diet and exercise (since the exercise seems to keep things moving nicely) you can really aid your pouch function. It's hard to do mind you, I spend a lot of time prepping my day (as I rarely eat out)....but I know it works cuz when I fall off the wagon the bloating and gas and other issues return. You might want to give it a shot. For me it's been worth the effort to keep my pouch feeling great, my energy level is incredible and the health benefits including keeping my weight down are a bonus. Good luck. Hope you find a resolution.

It was my understanding that after this surgery when we are recovered, we would pretty much be able to eat what we wanted. Didn't realize there are special diet concerns if you want your pouch to work properly.

My diet is very restricted as it is. If i were to give up anything else id be eating plain chicken breatst. Veggies will put me in the hospital or cause serious pain. Cooked or raw. A carrot can cause a days worth of hell. Even spinach dip can do me in. I eat nothing hard. No nuts, veggies, quite a bit of fruit is off limits, pickles, seeds, so on. Watermelom, strawberries, and melon if its soft are all i can handle. Im allergic to banana. I dont eat red meat at all or prok, mainly because of the inhumane ways the animas live and die. Chicken turkey and fish are all in the meat section i eat. And if my diet wasnt so restricted as it is id not eat wny meat. As far as sugar....im a candy addict. Its bad lol. I even have to be careful with french fries, the rare occasion i eat them if i dont chew them good enough.

Just to give wome insight on my restrictions and diet. Also, youll never catch me eating fried food. Im a health nut, lots of exercisee and healthy(ish) eating. I have to have a little goodness here and there. No fast food either.

Perhaps you're not eating enough? Your diet seems to be very limited. Not eating can lead to higher frequency, for many of us.

Sue

Do you know what condition the lining of your pouch is in?

Can a pouch be in good condition but make its owner intolerant of nearly all foods?

I only went in for a scoping at times when I had really bad symptoms, so I did not have a good idea of what the potential for improvement was from what I had thought was my "normal" pouch's state. I never expected to get such a huge improvement over what I had thought was normal pouch function from the Cipro or Remicade. I presume you've already tried these kinds of meds.

Another thing I find helpful is kneeling or lying down to pass gas, since it can be quite difficult to do so otherwise (especially in the workplace). The volume of the gas can be significant for some people when they consume various foods.

My diet is limited, I agree, but only to a degree. I've learned the hard way what I can and cannot eat. And there's a lot of things I just dont like either lol. This could very well be my normal pouch function with everything perfectly fine in there. I was so young when I went though it all I don't have a grasp on what was really done. I finally got the idea to get my medical records and read them years later as a nurse to hopefully gain some useful information, or at least get a better idea of what's going on in there.

I have not been to a doctor in a while I had no insurance for many years. I Have it now and I just need to take the steps to get one. I'm the "if its not broke dont fix it" type. Everything is OK, I just think that I can find a way to take it from OK to perfect (perfect for me anyway). I know we're all individual and our functions vary from person to person. I try my hardest to stay away from medications. Imodium and pepto I have no choice, but I'm the person that really has to be in a lot of pain before I take even an advil. I need to get over that lol. I just hate the notion of a pill for this a pill for that. Then depending on even more than I do now.

My goal in seeing a GI is getting some infomation I may not be thinkng of, or ideas. I'm even willing to try a few medications and experiment. Who knows there may be something crazy going on in there that's not showing any ill symptoms.

I appreciate everyone's advice and I do take a little from each person, it helps when forming a new plan of action to try.

candy and sugar will definitely cause your system to move things through very rapidly. So my first suggestion for you is.. get rid of the candy and sugar items. You will notice a big difference.

Second suggestion, try benefiber instead of metamucil. Its a different type of fiber and many of us have had much more success with that than metamucil. Just sprinkle a huge spoon on something you are eating at each meal.

Get a scope GF, never now that's going on ;-)

When I am in Florida next month we can talk pouches and pitties

I was about to come on hear and search about different fibers. The psyllium in Metamucil kills me, but the wafers do good work so I just kind of deal with it. I was wonderinf the different, risk/reward, and variations of different ones. I looked into Benefiber today but would rather not do the powder. Do the caps help?? I can't always take capsuls because the little capsul comes right back out lol. But i can do tabs and caplets.

I'm not ready for a scope yet. I don't believe anything is wrong, I just feel with the evolution of all we learn as a group here I could get some new information on how to help myelf, help myself lol.

Theresa - I recently found some chewable benefiber tablets. I'm undecided whether they work as well as the powder. The powder is so easy though. You can even get it in individual packets so its easy to carry with you. If you don't want to sprinkle it on your food (as certain foods it does make them gross - rice turns into silly putty) you can just dump it in the last part of whatever you are drinking and swallow it. Really its no big deal.