You don't have much choice now but to get use to it or go with the bag. My pouch is just as frustrating if not more than yours for 24 long years now. It's been a real roller coaster ride for me too that has left me unhappier and more regretful out of any surgery I've ever chose in my life. The best you can do now is experiment with your diet. Sometimes I take Lomitil too but it leads to urgent urination in my case or what I call "a no win situation."

What you are experiencing is normal so soon from takedown. I remember those spasms...they would take my breath away. But they do subside. I can't tell you when they will stop since we all heal and adjust at different paces. For me they lasted about a week after I got home from the hosptial. Three weeks after takedown I felt A LOT better and was back to my normal routine. The first few weeks are tough. Im sure you have a follow up visit with your surgeon coming up so just mention to him everything you are experiencing. It is normal though what you are a describing. Hang in there it DOES get better!

Oops I meant to say "sometimes I take Loperamide" not Lomitil.

thanks mgmt10, im definitely up for the challenge and can handle a few weeks but i get really down when it happens. lots of fear and crying and hopelessness but knowing others have dealt with it and rose above it makes it a bit easier to deal with. the light at the end of the tunnel so to speak...

It does and it will get better!! Calemoseptin ointment or any other creams with zinc oxide will help with the burning. Use them very very often and before the burn happens. Don't be afraid to use LOTS of cream. Baby wipes will also help instead of toilet paper. I found that right after takedown eating dry oatmeal helped absorb some of the stomach acid that was going through. Although you will have to limit some things from your diet now you can gradually introduce them soon. Also a hot water bottle, baths and yoga (breathing, relaxing positions) helped me to stay calm during the spasms. Also stay positive, reengage in the things you love doing and talk to people about how you are feeling.

I am sorry you are having such a hard time. The recovery from this surgery(s) is certainly tough. I remember being in the thick of it all and having that hopeless feeling. I had some complications after my 1 surgery. But now that it's all behind me, it was so worth it.

I had a side thought about what you wrote in your initial post about the unproductive trips to the bathroom. I had an anal stricture (scar tissue) develop after takedown making it difficult to empty. I had to have it dilated quite a few times before it finally stayed open. My insides would spasm and make TONS of noise then I would run to the bathroom and not much would come out. After I had the stricture dilated, I felt so much better. Just a thought and it never hurts to bring it up to your doc. Hope you feel better soon.

At about 6 months out I still get some (very very minor) spams where it feels like I need to use the bathroom, but it I do there's nothing much to show for it. Keep in mind that your small intestine is designed to just push things through more or less nonstop to the colon. With the colon gone, your small intestine (and the pouch, since that's what it's made of) is still trying to do the same job. In time, your body will learn that the pouch is the new "end of the line" and the spasms should get lighter and lighter (and perhaps disappear altogether).

before my takedown i had the same exact problem with mucus passing fine then struggling to pass it so i told my surgeon and she checked for any strictures during the pre op testing, flex sig etc. and all was well. i will ride it out as you guys have. avoiding sugar seems to help the spasms and immodium slows them down so they are not as intense. addressing this disease has got to be the most long and drawn out one there is. having it is long and hard, treating it is long and hard and surgery is long and hard. most surgeries addressing diseases are once n done with relatively quick results. this thing just holds your head under water forever it seems... one addition. for me anything that can cause gas usually ends up making my stool more acidic. i tried the oatmeal some of you suggest and OUCH!. how does someone like me add fiber then? i tried the metamucil before my takedown and my bag became a pillow. i dont dare try it with my already angry pouch...

quote:

i tried the metamucil before my takedown and my bag became a pillow. i dont dare try it with my already angry pouch...

Metamucil has slowed down the flow for me, with no noticeable side effects. I use a little of it now and then. I'd use it a lot more if its gritty taste was less repulsive.

I gave up on the Clear Metamucil though because its gas side effects were too strong and negated the whole idea of making life easier while living with a j pouch.

metamucil wafers for me gave me substance and thickening when I was going so much after takedown. I tried the powder form and didn't like it (made me gag). Chaseingtime...One day at a time! I had my takedown on 4/30/2012 and it slowly does get better but slowly is the key word!

Roberta

Chasingtime -- you don't have "to get used to this". In time, for the vast majority the spasms stop. There is a lot of healing going on. I remember feeling like there was a sharp knife being shoved into that orafice...but, it subsided and I haven't had that in years. Nobody should be telling you to give up after 7 days and go with a permanent ostomy. I am a 16 year veteran of the pouch, and although things haven't always been perfect, for me it's worked out well. Hang in there and keep coming here for advice and to share your experience. You will always find someone who has been through what you're going through, that will give you sound, advice. You're never alone. xo

thank you so much. im going to try my best to hold it as long as i can cause going to sit and pass nothing just feels silly useless and painful. i feel hopeful because of you guys and realize i am only 8 days out. i will not give in now or ever...

i am 4 months out. i remember the earlier days very well. weirdest feelings ever! spasms galore! mind numbing numbness! tears on the toilet! yanking my hair out! when good people on this site told me it will get better, i didn't believe them!!! I rolled my eyes, but they couldn't see me i thought they were just saying that to make me feel better and that i would be in misery forever! even when my doctor told me to be patient, i felt like giving him a rectal exam he wouldn't forget! but they were all right, the crazy madness pain and nonstop spasms passed after some time. now that i see improvements in various aspects of the pouch, i have become more patient and positive with other issues i have, like butt burning! keep up the patience and u should get over this hump soon

fq said it best. And fq the butt burn will get better too.

You are right chasingtime this is a long and hard disease. You are reaching the finish line where your new beginning will be. Keep on going.

chasingtime....the key word here is Patience! I have had to adapt to that word, also. Usually most surgeries you have a period of recovery and your done. I would say to my surgeon every visit "I have been gutted" and he would say that is what we did to you! Your body has to adapt to the new plumbing which for some it does not come easy. I know because I am one of them! Takedown 4/30/2012 and still having issues.
Thank GOD..I discovered Yoga when I had my UC because if it wasn't for that (meditation and such) I would have gone off my rocker. This site has helped me a tremendous amount, too. You think you are the only one having all this type of pain and problems but you are not alone! Keep the faith -
Roberta

heres the thing with me. i actually managed my colitis for a while with diet. i briefly took any of the meds they gave because first they didnt help and second i read what the aftermath has done to some. im used to figuring things out on my own and coming to an acceptable solution. i will deal with this in the same way but i can see it will be a whole different struggle. plus the fact that you are dealing with what feels very similar to colitis in the beginning and the aftermath of very invasive surgery. at least with colitis i didnt have the discomfort of my guts ripped up and wasnt dealing with an open wound on my belly. i see the light at the end of my tunnel however and i will end up satisfied. my body and mind know of no other way. after all i am only 10 days out and im already having more ups than each day before. thank you guys for all your advice and support...

Gas-X will make those spasms go away. I was having the same issue. I take 5 chewable cherry flavored tablets per day. It REALLY helped a lot!

Yes, this feeling, awful as it is, is normal. It was my experience as well. It seemed early on that I could not do anything to contain the frequency. Low Fiber, high fiber, no sugar, no caffeine, loperimid, metamucil, gas-ex, beano. It didn't matter. I'm happy to say I'm two and a half now and in the last two weeks I've turned a major corner. I can eat (almost) whatever I want. I still follow the rules like no sugar, no snacking (I break that one time to time), low amounts of fiber with the intention to build on that. But it will get better, I didn't think it would get better early on and I worried I would have to live with going to the bathroom 10-14 times a day. Slowly but surely, the frequency went down. Now I'm at 4-6 with 1-2 overnight and that at 2.5 months, probably could get better. I no longer have to put calmoseptine on every time just to avoid extreme pain and itching, I no longer fear chunks of time I have without bathrooms because I know I can hold it until I need to no longer.