Hi, I am new here. I had UC for 8 years and it went from controllable with Lialda to short term disability and then they were going to put me on Remicade. I really didn't want to be on immune suppressants because I always seemed to be sick with a cold. I opted for the J-pouch. I lost about 45 pounds and asked the doctor if it was enough, and she said it would help to lose another 15. So I lost 60 pounds and luckily my gifted surgeon was able to knock out 2 steps.

My first surgery was Nov 2015 and I woke up with a temporary ileostomy. After battling a bad kidney/bladder infection, I healed up again and put back some weight (I lost 30 lbs due to E.coli), I opted to do the take down in July 2016. Before and after each surgery I worked out and ate pretty good; high protein diet for the most part. I'm going to skip over the nightmare of the complications, like my small intestine not waking up both times and the catheter stuff.

So I had a J-pouch, and then diarrhea. I was in the hospital 19 days the last time. My veins were dried up like a prune but they discharged me right when I could walk again. I started to improve and taking the imodium gels helped.

I noticed that I couldn't eat anything I wanted eventually. I would get gas and go to the bathroom much more. The GI doctor suggested a low FODMAP diet and I started to figure out what I couldn't eat. Mostly the same stuff that I couldn't eat before the surgery.

The things that seem to trigger gas/bloating/belching and then increased motility seems to be starches and carbs that are not readily absorbed by the stomach. It seems that they are processed in the small intestine and the bacteria eat them, creating byproducts that irritate the small intestine. My doctor put me on Cipro/Flagyl and the symptoms seemed to abate almost immediately. It improved for awhile.

Then again, as soon as I ate carbs, the symptoms slowly seemed to get worse. My GI doctor decided to do an endoscopy and afterwards told me that my J-pouch was "angry". She wanted to do rifaximin but my insurance wouldn't cover it (I just switched) and put me on cipro/flagyl again. As long as I stick to my high protein diet with minimal carbs, I seem to do better.

My doctor also told me to do VSL#3, so I bit the bullet and bought some. I've always taken some probiotics, mostly bifidum, but this was a bit different. It was like oxiclean and it cleared me out almost immediately. The cipro/flagyl kind of constipates me, so I think maybe it was an ok thing. I have noticed increased gas, so the doctor told me to take only one pill a day until I finish the medicine.

Does this get better with time or am I always going to have to be really careful about what I eat? I've got no tolerance for milk, corn, cheese, potatoes (starches), and a whole bunch of staple foods. I can eat chicken, beef, lamb, steamed rice, green beans, and white bread without too much trouble. I just worry about the discipline I have because I love sweets and in particular: cookies. I crave the carbs and it really sucks that I can't really enjoy a candybar because I am going to be bloated and sick for hours afterwards.

 

Original Post

Hello, Brian.

Welcome! Some baked goods are made with Stevia, a sugar derived from a plant. Whole Foods, or a health food store, or maybe Costco may have baked goods using stevia? I don't know if stevia will be better or worse than refined white sugar for a j pouch but you could try a baked product and see. It will say on the package that it's made with stevia. Something else to try are enzymes in pill form that might help with the gas and bloating and undigested carbs. I tried one called Super Enzymes recommended by a member here. It was easy to take immediately before a meal. I kept the bottle on the table. It seemed to help me digest. I didn't need it after my pouch settled down and matured around the one year mark. Still I cannot eat spicy or acidic foods (burn on the way out), and some members take daily doses of Metamucil and can eat anything, lucky. Can you manage fresh fruit in your diet? I manage an orange a day, without burning, and I'm happy to have those nutrients. You can do a search on this site to see what conversations have been regarding enzymes.

The foods that you are able to eat sound great. 

Hi, Winterberry, thanks for your reply. I don't think actual sugar (sucrose) really bothers my pouch. I think it's starches and complex carbohydrates that do. It seems that bacteria eat the starches and break them down in the small intestine and cause really bad bloating and gas. So eating cake/breads etc are difficult because of starches. I've tried different fruit, and the fructose has always bothered me, even when I had UC. It's been interesting because foods marked as safe on the FODMAP diet have really caused an overgrowth. I used to take the enzymes and totally forgot about them. I will try them again with the carbs I currently eat and see if they help. The butt burn was really bad when I first started to acclimate to the J-pouch but really improved when I stopped eating cheese and anything derived from dairy. I know lactic acid burns for sure, because that's what gives cheddar it's orange coloring and it was particularly noticeable when i ate cheddar. I'm not quite sure how to feel about where I am right now. I am just happy that I've healed quite nicely.

Hello, Brian.

Can you eat cheese made from soy? I love cheese. The world is better with melted cheese on top.

For butt burn, I use plain Zincofax, the brand made for babies' diaper rash bums. That's basically what j pouchers have. I used Calmoseptine in the beginning and it helped cool the area. Now I only need Zincofax. I hope you find a good super enzyme and it helps with eating baked goods again. I eat one fresh orange a day and I noticed everything is orange coloured!

I haven't tried cheese made from soy yet. I used to eat the lactose free Borden's cheese but it doesn't work well with the j-pouch. I have had to pretty much eliminate it from my diet. I was going through Calmoseptine really fast when I first got the J-pouch but cutting out cheese quickly stopped that.

The bloating and gas I would get was pretty severe. My pants wouldn't fit and I would get this pain on my left side and it would travel up to my shoulder. Once I passed that gas I felt better.

My doctor is convinced that I must repopulate the bacterial flora and that a bacterial overgrowth problem is quite common with people with a J-pouch. I do remember one of the doctors after the surgery telling me that some people are stuck with taking antibiotics for the rest of their lives. The surgeon told me that it takes about a year for the j-pouch to stretch out and settle down. I guess I will see what happens in a few months.

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