Spasms/Contractions with Jpouch? Before Jpouch?

I had those painful cramps and spasms when I had UC. They are gone now, however, right after takedown you may experience them for a little while while your body adjusts to it's new plumbing.

I had IBS along with my IBD. I now have IPS with my j-pouch. I still would do the surgeries all over again.

I hope all goes well with your surgeries!

Toughenough - how can you tell if you have IBS and IBD or if the spasms are just from IBD? I am sorry to hear that now you have IPS - are you able to control it with antispasmodic meds? How many times bowel movements do you have per day and is there urgency?

My worry is that if I develop IPS after surgery and I continue to have all these painful spams, urgency and many bowel movements per day with the Jpouch, will it be worth it?

The J-pouch is worth it, even tho I still have IPS as I'd had UC and diverticulitis pan colon, was in pain and didn't want to go the remacaide route as I was already at risk of getting cancer as I have UC for over 14 years.

Both times I was diagnosed was by my GI at the Mayo Clinic. I was there in 1998 and he diagnosed IBD along with UC. My local GI just had the UC diagnosed.

When I was there this May he diagnosed my cuffitis (UC still) and IPS. They biopsied up 2 feet in my small intestines and several places in my j-pouch and rectal cuff. I don't know exactly how he diagnosed it other than he said I had a little inflammation in my pouch but not to worry it wasn't pouchitis. My local GI had me go back there as he didn't know how to get my cuffitis (UC) into remission. As he said, he deals with the entire digestive system and Dr.Loftus deals only with IBD.

I'm taking the same antispasmodic as I did with UC. I tried a different kind this week and it made me sick. I will probably try another as the one I take messes with my vision.

There are a lot of potential problems with the surgeries but 90% or something close to that percentage have no problems. A lot of us on there are here because we are having problems. Some are here to support us as they are no longer or never did have problems. The j-pouch people not on this site are out living productive and normal lives.

I bet you are going to be one of those.

I forgot to answer your question! I could hardly ever tell if I was having a flare or not the last few years before the surgeries. I was in daily pain but not always accompanied with numerous BM's. If I saw blood I was sure it was a flare but basically the longer I had UC the worse it felt. I was taking lots of antispasmodics the last few years before the surgeries.

Gotcha- thanks for the words of encouragement they mean a lot! =) So,how many bowel movements do you have per day now and is there urgency from the IPS that you cant control? are you able to control it with antispasmodic meds?

Pkitty....where have you decided to have your surgery? It sounds as though you are going to be very well prepared!

thanks CeeCee I'm actually not even 100% sure yet if I should do the surgery. One day I think I am going for it then the other day I think maybe I should try some of these new clinical drugs that seem promosing like Vedolizumab - have you heard of it? It's a drug like Remicade but specficlly targed in the colon. Right now I am still leaning towards surgery but, it's a tough decision. And if things like these spasms I have now continue post surgery if they are because of something else like IBS in addition to UC, I may still struggle with things like IPS.

Pkitty,

You will know when you are ready for surgery. If you have too many reservations about it, then you are not ready yet. It took me two years to realize I just couldn't waste another second of my life with this stupid disease. Plus toward the end I was was really getting sick and I just couldn't live like that anymore. Sometimes you have to toss the "what ifs" out the window. Life is too full of them. Best wishes in whatever you decide to do.

Pkitty-Making the decision to have this life changing surgery is one of the biggest decisions you'll ever make. I'm not sure what degree your UC is at? Have your Dr's recommended this surgery? Are you responding to meds? Most of us with UC have failed the meds and really had no choice.. Some wait longer which means going in sicker and on prednisone and some try to get in before the flare runs rampant. This is not an easy surgery and you should be as prepared as possible and just know it will take time to heal. Reading all these forums before surgery is very difficult. I did the same thing and scared myself about all the complications. I think it's best to make sure you're in the hands of a highly experienced colorectal surgeon. The success rate is high on this. If you think it would ease your mind to talk on the phone with me about my experience I'd be more than glad to. Just pm me your number. I will tell you that I had my step 2 of 2 almost 3 weeks ago and I do feel that the light at the end of the tunnel is starting to shine.

I can always hold it and do not have to run to the loo ever. I can hold it with or without taking the antispasmodics.

I go more than normal because of my cuffitis problem. The Mayo doctor that did my flex scope said when I get over the cuffitis I should only have to go around 4 times a day because I have a good looking pouch and it is a good size.

I also think you should wait to have it done if you are not sure.

I'm in my 50's and refused to go on prednisone again or try remicaide, due to the potential side effects, and I also had diverticulitis pan colon with my UC. It was one ugly colon.

I was tired of waiting for the cure. Now if I'd been younger I might have tried the Remicade years before it got so ugly. Just in case they would come upon a cure.

I haven't seen anything close to a cure in 20 years. I had the surgery ending my last 6 month flare from hell, plus I had had it so long I was at a high risk of getting cancer. I didn't have precancerous cells yet but I didn't want to wait in pain.

I agree with everyone who says you'll know when you're ready! I held off three years while I tried everything my GI doc would let me try. He was very kind! Finally, he sent me to a colleage of his at Cedar Sinai who heard my story, examined me and then said I had learned to cope too well. She asked me what I was waiting for? Well....that did it! The final treatment I tried was a medication that gave me pancreatitis. So much for that. By the time my surgery date came I almost ran to the hospital....I was that ready! So....don't be afraid to hold off on that final decision. Unless dysplasia or cancer is present...there is time to make this final move. Best wishes!

Thanks guys! Toughenough - thats not bad at all - only 4 BMS a day with no urgency even with IPS? So then, how does the IPS affect you? What does it cause?

Pkitty,

The Mayo doctor that did my flex pouch scope said when the cuffitis goes away my pouch was built well and I should only have to go 4 times a day, versus the 10-15 I'm now going.

I don't have urgency like I did before the surgeries but still have to go a lot now. It is uncomfortable I need to get rid of the waste ASAP. Sorry I didn't explain that too well.