I've been experiencing rather intense pain when what feels like stool is passing into my pouch. It then causes me to have to tense up to prevent having a bm. At almost 5 months after takedown, is this something I should be experiencing? I just heard from my doctor, via his nurse, and he said it's normal. I find this to be bs and have set up an appointment to talk with him about this. I've had this pain before but it didn't hang around this long. My results from this surgery have been one problem after the other. I'm tired of it.

Does it feel sort of like spasms where it will tense up and you'll have a lot of pain but then it will let off? I had pain like that for a long time after my take down. I was worried I would have the pain forever but my body adjusted. I don't know if you are having the same kind of pain or and if your body is still adjusting to things. It is always a good idea to talk to the doc about it though.

Yes...that's exactly how it feels. How long did it last? What gets me though is that I've had this pain before but it seemed to go away after some antibiotics. But then after I take the usual 10 day dose, it ends up showing up again later. I don't want to have to keep taking antibiotics all the time. I worry about developing resistance and then being in a lot of trouble.

It's been a long time since all my surgeries but I'm thinking the spasms lasted till around 8 months or so? I would find myself having to stop whatever I was doing and just hang on until the spasm passed. I got some interesting looks while walking around somewhere like a mall
Hopefully it will get better soon. I don't know if because I had it too means it's "normal" but you're definitely not alone. I have faith that it will get better. And just because it happened somewhere between 8-12 months for me doesn't necessarily mean that will be a magic number for you. everyone's body is different.
Hope it gets better soon.

I've had the same feeling since takedown (one month). The first few weeks were rough but it doesn't bother me as much now. Seems to be triggered mostly by gas cause if I can manage to pass gas or if I use the toilet - the feeling goes away usually for anywhere from 1 to 4 hours.

I don't think that anyone should ever get the idea that significant pain is normal, at least in the sense that it should be expected and accepted.

However, while pain is an indication that something is not right, it also does not mean that your pouch is doomed or you are going to be forced into living a life of pain. Everyone can expect the occasional cramping or phantom type pain that seems unrelated to anything (even those without bowel disease or surgery). But, as long as it is short lived and non-recurring, you can pretty much just forget about it.

What you describe sounds a bit like a pouch inlet stricture, which could be an actual scar tissue stricture, or it could just be swelling that is secondary to pouchitis. The latter seems more likely since your symptoms are relieved by antibiotics. It is possible to have both though (as in the stricture actually being the cause of the pouchitis). You are right to follow up with your doc and not accept ongoing pain as a "normal pouch function." It is quite possible that you have chronic or recurring pouchitis and may well need to stay on long term antibiotics to have good function. Unfortunately, this happens with a small percentage of patients. Have you been scoped to be sure this is pouchitis that is being treated? If not, it may be time. I wonder if you doc is thinking you are over reacting to pouch adaptation and you need to give it more time. This is possible. Also, it could be IPS (irritable pouch syndrome), but since it responds to antibiotics, I would think it was less likely.

Jan

I was scoped about 6 weeks ago and everything looked fine, except for a small stricture caused by scar tissue, which was removed. No signs of pouchitis and my pouch "looked good". I've had this pain before but I can't remember what relieved it. I do know that I was on amoxicillan for 10 days about 4 weeks ago for a hard bump on one of my previous incisions and I had never felt better. However, I really don't want to take antibiotics again and probiotics make things worse for me. Not quite sure what I'm going to do...

Has anyone else experienced this?

It sounds as if there are a few of us that have experienced this. As long as you are following up with your doctor and being proactive in ascertaining if there is anything wrong, you're doing everything you should. I'm not saying just accept pain as "normal" and deal with it but sometimes your body just needs time to adjust. Don't get discouraged. It seems like my pain was related to my pouch filling up and my body not knowing quite what to make of it yet. I haven't had those spasms in years, now that everything seems to function as it should and understands is place. Whatever my life is now, this is "normal" for me and I don't remember what it was like before my Jpouch. Oh, and incidentally, I never took any medication for the spasms, they went away on their own. Just make sure you keep talking to your doctor about everything and keep being proactive.

Thanks for your advice "Olive Oil"! It's comforting to know that this happens to other people besides myself.

Warren, did you know that strictures can reform? Just because it was taken care of before, it does not necessarily mean the end of the story...

Jan

Hi Warren,
It sounds like we have very similar problems. I have had one problem agter another also and have repeated bouts of pain. I also have pain-like "spasms" quite frequently. I notice the pain when my pouch is filling and other times when I seem to have a lot of liquid moving around in my intestines. I have had constant problems with the consistency of my stool (all liquid) and as a result, with keeping my potassium levels up and staying hydrated...wondering if you have any of the same problems.

Jan,
I have been told that strictures can reform. However, I don't really have pain or difficulty when having a bm...it mainly happens when my pouch is filling. This makes me think that a stricture is not the problem. Previously, when I had the stricture I had more difficulty emptying.

SeedTchr,
It does sound like we have some similar problems. My consistency is rather inconsistent as well but I'm working on adding more fiber to my diet to help deal with that. Have you tried adding more fiber? It helps me some. However, the pain still remains. I also drink about 10 glasses of water and gatorade when I feel really dehydrated. How long since the completion of your pouch surgeries? I'm hoping time will heal this problem of mine. Have you addressed this with your surgeon? What did he/she say?