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Hello.

I'm hoping someone, anyone can help me. I had a total colectomy in March of 2013, became septic, was in ICU for about a month, went through several months of chemotherapy, and had my ileostomy reversed in February of 2014. Since then, I've been having troubles with my J-pouch. I go to the bathroom several times a day (about 15 times a day or so), and several times overnight (about 3 - 8 times during the night), which obviously hinders my sleep. It's almost as if I'm flaring with UC again.

I do not have pouchitis and my surgeon said she cannot see and leaks in my system. My GI prescribed Mesalamine suppositories, Amitryptaline and Diphen/Atropine, but I'm still not improving. Has anyone out there had any similar issues? It's been a little over three months since my reversal and I just thought I'd be in a much better place by now. The urgency and pain (not to mention skin irritation back there) can be so severe sometimes that I'm afraid to leave my house again (much like when I had my UC flares).

Any tidbits of advice at all would be GREATLY appreciated. I'm beginning to panic over the possibility of having another surgery... I just don't think I can handle that right now.

Please help. Thank you.

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Your pouch is still an infant in its adaptation period so it needs trainning...I'm a k poucher (35yrs) and had to learn a whole new way of eating to make my pouch happy...
What are you eating (and what are you not eating?), what are you drinking and when and what meds do you take by mouth...it all adds up.
It took me 10 yrs to find my pouch-friendly diet (things were different back in the pre-internet dark ages) and so it was a lot of hit and miss but the general rules stand true.
Avoid refined sugars but fruit and especially applesauce are your friend. Ditto for rice & bananas. Stick to simple animal protiens (fish, chicken and light meats and eggs) and overcooked or puréed veggies. (too soon for salads but that too will come in time).
Oatmeal is very pouch-friendly and serves to thicken things up, mashed potatoes too.
I sort of lived off of tomato soup, oatmeal and mashed potatoes for a long time.
You might want to try fractionning your input and stick to 1 foodgroup at a time (I eat my carbs with carbs (pasta with bread, oatmeal & toast) and protiens with veggies (fish and salad, chicken and tomato soup...)and that seems to help my digestion and my pouch to empty out completely and leave me alone (it is also seems to keep the gas at bay...)
Keep a food diary and don't forget to mark down, when, with what and at what time you ate...there is a pattern and you will find it...And learn what works for you.
Good luck and don't forget to drink...going so much is going to dehydrate you.
Sharon
ps...others will talk to you about meds like lomotil and pepto but I don't know enough about them to be of any help.
skn69
Thanks... I'll def start doing that with the food journal.

I often also have intense stomach cramps, feelings of urgency, and spasms... is all this normal too?

I've never heard of a K-pouch. Did you have to get that because of UC???

I see lots of people list their diagnoses so here are mine:

August 2000: diagnosed with UC
March 2013: diagnosed with malignant tumor in my ileum/total colectomy w/ ileostomy
April 2013: sepsis/emergency surgeries for that and several pockets of fluids had to be drained (forgot what that's called)
July 2013 - January 2014: chemotherapy
February 2014: ileostomy reversal
S
Definitely the food journal and sticking to a low residue diet for the time being. Metamucil biscuits saved my life at the beginning; just two a day really slowed things down for me. I never had to go to other meds (besides immodium) so will leave that to others.

Are you doing kegels? Very important to strengthen the muscle control down there and not go every time you feel the urge. It takes time and practice, but it does get better.

As for the pain, are you using any barrier creams? They help a lot.

Best,
Gin
GinLyn
See,
The K pouch was the ancestor of the J pouch, used to replace already existant ostomies of when a procto-colectomy was needed (close up the bottom end)...I had Very severe IBD with a whole lot of other problems (stomach ulcers, non-functional sphincter...) so that was my only option if I did not want an ostomy...Since I had already had a colostomy I knew that I didn't want one.
They do them more now for people with failed j pouches...since they are a much better option and an easier surgery for both the patient and the surgeon (k pouches have very delicate valves and they can potentially have problems...)
Our pouch contents need to be liquidy because they need to come out of a tube (a 30 or 32) so we have some good tricks on thinning things out.
The list goes from prune, grape, blueberry juice or pretty much any dark fruit juice.
Hot green tea or any mix of green tea (I personally like the fruitty ones) and some dried fruits (prunes, apricots and sometime figs but they can work against you too if you don't chew well)...Then again my favorite is coffee....I drink about 1/2 gallon a day...never effects my sleep...I love it.
Have you considered that you may be dehydrated and that is a partial cause of the thickening stuff.
Up your liquid intake, sip juices and yes, if your pouch is mature enough you can lavage it (we irrigate our pouches often with tap water when things get too thick in there).
Good luck and keep us posted.
Sharon
skn69
Good morning, everyone... thanks for all of the feedback.

First thing I did this morning when I got off the train on my way to work was buy a box of Metamucil fiber wafers!

To answer your question, skn, I think I'm lacking in the water department. I have a bad habit of downing coffee, juice, Snapple, but not water, so much. I better change that, huh?

I do have cream for my behind, but the pain I'm referencing is internal. I read a few other threads and I think the proper term I should be using is "spasms."
S
I just started taking Hyoscyamine, which is an anti-spasmodic. Dissolves under tongue. I take 4x a day and really help stop that feeling of needing to go associated with spasms. Metamucil cookies great but I use Metamucil after each meal, and have cookies for when I am not at home. Reduced my trips to bathroom significantly. Good luck! My take down was March and I am still watching diet and tweaking things, but so much better!
Laurie
L
Some spasms can be normal as things adjust; the pouch is getting used to working.

Definitely get off the juice & anything with sugar; that makes your output more watery, which increases frequency. Coffee can do that as well. After SEVERAL years adjustment I am back to my morning cappuccino, which I love!, but pretty much drink water, milk, and decaf tea the rest of the day. One glass of fruit juice for something different. But water and tea are your friends...

Gin
GinLyn

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