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J
Sorry guys, but I am back with another question and issue.

Does anyone experience gnawing constant upper left sided abdominal pain? It is about an inch or so above the belly button and is very similar to the pain I used to complain about with UC when I had my colon and always thought is was a coming from the colon. The belly is tender to the touch and aches constantly.

I notice when I miss a dose or more of antibiotics, it becomes worse and then the butt burn starts up again. The doctors keep telling me I do not have crohns and not to worry, but I am wondering if this is upper inflammation rearing it's head and may explain why I can never get off antibiotics without issues as well as the chronic cuffitis. I am on canasa , pentasa and cipro 250 X 2 daily. Could all these meds be causing gastritis?

I am really wondering if I am dealing with perianal crohn's or plain out crohn's that is now showing up almost two years after surgery. Also, I have been bleeding on and off and this is not bright red blood like with cuffitis but more maroon in color (or very dark) and mixed in the stool. Does anyone know if you are bleeding above the pouch would the blood show up in the stool or would the stool be just black by the time it exits the pouch?

All my tests and scopes in the past point totally to UC, but we all know how that goes after jpouch surgery.

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TE MarieTE MarieMember
I don't like the dark blood in your stool. If I were guessing, remember I'm an accountant, I'd say you might have a stomach ulcer that is bleeding. The reason why it isn't black on the way out is you are missing 5 feet of your intestines. Plus they treat some ulcers with antibiotics so when you miss taking them it's worse Confused My father had a bleeding ulcer and felt no pain in his stomach. He was loosing blood from somewhere and they went looking for the source.

I think you are right. Something is probably wrong and it needs to be investigated.

I have lower left sided pain from my j-pouch and think that's either gas or cuffitis related.

Have you had an endoscopy lately?
TE Marie
J jeaneMember
Thanks TE Marie,

Actually I have never had an endoscopy EVER...can you believe it? I always complained about this pain with UC and my prior GI always shrugged it off. Even my new GI thinks it may be scar tissue (really? my ostomy was on my right side). This is a deep, lingering, constant aching pain and I would not be surprised if I have a
stomach ulcer with all the meds I am on. My biggest concern is bleeding in the upper small intestine and what that may mean and why when off antibiotics, my anal pain/burning always worsens. I am also worried it could be pancreatitis with all the canasa I have been on over the last year...
J
Jan DollarJan DollarModerator, RN, retired
How can they rule out Crohn's without upper GI studies? I doubt this is pancreatitis, because it would show up in your labs. That pain is usually on the right or in the back, but, still a possibility (just unlikely). You can have adhesions anywhere, not just at your ostomy site, but if it is severe enough to cause bleeding, something to investigate, not dismiss. You can have dark red blood from cuffitis or even bleeding just above the pouch. Just depends on how brisk it is or if it is a slow ooze.

I do have occasional left sided pain, and it assumed to be adhesion related. Typically it is also associated with a period of obstructive symptoms. But, it is not chronic.

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
Jan, can they see adhesions with an ultrasound? Is there any way to see them, MRI??? I would like to know exactly where mine are, besides my stoma location. Then I hopefully can tell if they are causing my pain. It seems like too much pain to all be caused by IPS. My entire abdomen, it's like being in labor 24/7. I have recurring cuffitis too but always the pain, even when I don't have cuffitis.

Sorry for barging in on your thread jeane....It's been over 2 years and really getting old. I've been in Florida for almost a month and have been to the beach 2 times and out to eat zero. My husband got Applebees curb side for us last night.
TE Marie
J jeaneMember
Thanks Jan. Do you think it makes sense to request a full upper GI series before agreeing to ANY additional surgery? I have had CT scans and MRI's but never an upper endoscopy.

Would it really make a difference with regard to advancing the pouch? Maybe I do have bleeding from the lower pouch due to the distal pouchitis and chronic straining to empty from the stricture. I am waiting to hear from both surgeons today to decide next steps. I can function on cipro as the anal pain goes away but the straining from the constipation from this med is annoying and I know not good for my pouch.

I am not too excited about having this surgery if I have pouchitis in the distal pouch as I am really not sure if that makes me a candidate for advancement surgery or not and I am sure I will not know until I come out of the surgery.
J
Jan DollarJan DollarModerator, RN, retired
No, adhesions really do not show up on any imaging. What can show up is what affect they may have, like distended loops of bowel from obstruction. Otherwise, they are diagnosed by ruling out everything else. The only way to "see" them is by the naked eye or laparoscope. Of course, since they are caused by surgery, and you need surgery to release them, the risk of surgery is that of causing more adhesions in the process. That is why they only do surgery in dire situations as a last resort.

They now think that sometimes nerves get entrapped within the adhesion tissue, and that is why some people have terrible pain from them, even without obstructive symptoms, when other people are not bothered at all by them. Anyone who has had abdominal surgery has adhesions, but some more than others.

If you pile IPS on top of adhesion pain, it is a real mess... because surgery will not cure the IPS.

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
Thanks Jan,
I asked my Neurologist is there could be nerve involvement/damage from all of my abdominal surgeries and he said no. I need to explain to him exactly what all of the surgeries involved. When is it a last resort? Do I have to suffer the rest of my life? Even if I ditched my well built well functioning j-pouch, that gets cuffitis, for an ostomy I'd still have the adhesion pain and something resembling IPS/IBS in my remaining intestines right? Plus a 6th surgery to cause more adhesions. Confused
TE Marie
K KDelphiMember
I may not know what I am talking about, and this wouldn't be the type of doctor to ask, but, since no one else seems to be able to help....my urogynecologist says that most ppl. with major abdominal surgeries will have nerve damage...I don't know if it could cause what u r talking about, but not sure why not....unfortunately, he also said that "going in there" to release adhesions might just make things worse (I may have to resort to it, though...my nerve pain is upper left quadrant, also have nerve-damage caused severe perianal pain---pudendal nerve? I am almost certain this is the nerve, as when it is injected with lidocaine, the pain goes away--for awhile) Haven't tried anything for stomach pain....to be honest, I am afraid to bring it up, I am so afraid of another surgery...I know, I know
K
TE MarieTE MarieMember
Since that post I've fired that neurologist. I think there is hope for pelvic floor pain with physical therapy. Have you discussed this with your urogynecologist? As for my other adhesions I have and still do some self massage when I feel them to try to break them up. I don't know how to explain this in a better way that that but it has helped plus I've found out I do get pouchitis not just IPS as thought before. It's pretty hard to diagnose if it's not active when you have a pouchscope. It was active this summer and confirmed through biopsies.

I know how you feel about surgeries. Never more!
TE Marie

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