Hey fellow Ileostomates - I am 3 months post surgery [permanent ileostomy after failed j-pouch] and still experiencing pain in and around my stoma site and my abdomin. I was wondering how other people did after their surgeries and how long before they were pain free. Or if there is no such thing as "pain-free" how do you folks control and live with the on-going pain and discomfort associated with the stoma. I'm not talking about oh-my-god type pain, just pinching, pulling and dull aching that comes along. I'm just wondering if I jumped back into life too quickly after my surgery and never gave it a good chance to heal. I went back to work right away and am too active to just lie around waiting for things to heal. I'm taking Percocet now for pain and am worried about the quantity and duration. My doc tells me that I may just be stuck with pain for the remainder of my life and we'll have to manage it as we go. I'd like to think that all those years of really bad "oh-my-god" type pain I had with the J-pouch are gone and now I can be med free.

I appreciate any and all comments you folks can offer. I really don't know what is "normal" and what other folks have come to expect. Thanks as always.

Cmkbirdlady
aka Catherine

Hi Catherine,
I am almost 2 years post ileo and still have aches and pains. None of it is more than I can handle but it is annoying. Last night I had a bout of sharp pain as some high fiber food worked it's way out. While I have been told many times that my stoma has no pain receptors, ti sure does feel like it hurts! I wish I could tell you that it will go away but for me it sure beats the intense UC pain that I used to have.

I have no pain, and haven't since about 2-3 months post surgery (and at that time, I took only Tylenol). I can feel certain things now and then, but nothing that even merits a Tylenol, let alone a Percoset. At most I might feel food trying to come through if it is particularly thick, or maybe an occassional sharp pain here or there, but nothing sustained and nothing severe.

I'm not sure I'd be happy with the dr saying you may just have to live with the pain if he hasn't done any exploration to figure out what the cause is...I'd push for more information. DOes he think it is adhesions? A possible kink in the intestine? Yes, some people do end up living with chronic pain, but I think it is early for you to accept that answer.

Hi Catherine. I'm about 5-6 weeks out from my surgery. I do exerience pinching, but I think that's from my wafer who's hole is too small. I also have cramping when I stretch my abdominal area. My ostomy nurse at the hospital said they don't know why this happenes. Heck, didn't we just alter the functioning of the human body? But I'm still in the healing phase. The pain is decreasing. I do gentle yoga exercises that help with the anal pain from the incisions and abdominal pain. My husband is a physical therapist and does myofascial releae, a type of soft tissue work, that helps in scar tissue reduction. Maybe look into one of those.

Good luck, Judy

Hi Catherine,

If you're talking about the kind of pinch-y achey feeling inside your abdomen (as opposed to soreness around your stoma), I'd say I had those kinds of pains for about six to nine months. Honestly, it just dawned on me one day that I hadn't had any of that kind of pain for awhile, but it sure hurt at first. I don't have any pain anymore aside from an occassional bout of raw peristomal skin.

-Rae

Thanks for everyone's response. This site is such a great support. You guys have got me through some really tough times!!

I learned from my ostomy that much of my pain is due to the fact that I've been opened up in the same spot on my belly more two 3 times. So therefore, lots of scar tissue and that what causes most of the pain. I also learned that because I've very active in my garden and can never sit still for very long, all that activity constantly aggitates my belly area and the scar tissue and so I get pain. Unfortunately, I am not willing to sit like a bump on a log and do nothing just because I had surgery. I have to get out in my garden almost every day. Its the squatting down, bending, pulling, etc that goes with gardening. If I wasn't gardening I'd be hiking or doing so other activity. So I just have to learn to deal. At least I have a great physician who specializes in pain management. She prescribes Percocet for me. That and motrin work just fine. I'm lucky to have found her because my surgeon and the GI doc were psychos about prescribing any pain meds. They treated me like I was some sort of drug-addict.

Anyway, its getting better. I'm impatient so I want to be better right now. It's only been 4 months since my surgery.

cmkbirdlady
aka Catherine