i'm getting really concerned...i just had a remicade infusion and i am feeling a little better...EXCEPT for this aching that is between the rectum and tailbone...

i had it before the remicade so it is not a side effect. it seems worse when i have a full j-pouch and i get a bit of relief emptying it out...but not always. heat helps it a bit so i use a hot water bottle..advil doesn't seem to do much.

i don't know what this is, but i have a couple theories.....
i have a fistula that is right in the middle of the sore area so maybe now it is healing and the scar tissue is forming?????....anyone have fistula experience and know if this is possible? if it is scar tissue how long do you think this will go on for?

OR maybe i have been straining when i go to the bathroom too much and pulling muscles?? i do push a lot and go to the bathroom a lot...and i don't think it is pouchitis because my stool has actually been really thick and normal lately, especially since remicade.

i guess abcess is always a possibility too but it hurts more in a general area than one spot and it has not gotten worse since remicade treatment...hmmm...

and any ideas for pain relief?

thanks, and hope everyone enjoyed the long weekend!

The pain you describe is very much like the presacral abscess I had. Dismissing your pain as caused by an abscess because it is not well localized is probably a mistake. The deeper an abscess is, the less localized the pain and discomfort (because of the fewer nerve endings internally). A CT scan could confirm or rule this out. If it is an abscess the only way to treat the pain is to drain it.

Jan

jan, i am very concerned now...i went to see my surgeon and he examined me and said he doesnt think i have any infection and the pain is probably from straining and the fistula hurting..or even arthritic pain cuz i hurt my tailbone before.
i dont know if he is right...he didnt send me for any scans or tests....and told me to continue with remicade as planned.
my g.i. specialist is on vacation right now...
i still have the ache constantly, to varying degrees...he told me to take advils but they dont help. only hot water bottles do......
and today i have a red dot on the white of my right eye, and i havent hurt it, touched it, or coughed so i think maybe im taking too much advil???
im supposed to be watching for side effects of my first remicade infusion still...is any of this a side effect?
im really having anxiety over this. seems like remicade has helped a lot, except for the back ache thing wont go away (i had this before remicade but never to this degree or that long..)

I have had pain in the location you described, and both my GI and surgeon scoped me and concluded it was caused by straining. I resisted that (mainly because then I would have been the cause of my own problem), but they turned out to be correct. I stopped straining so hard, and have had few problems for the past 10 years.

You might try loosening up your stool with your favorite fruits and fluids so it will be easier to empty the pouch. Lay off the ibuprofen, because NSAIDs tend to increase stricture/adhesion formation, which is the last thing you need. Use acetaminophen instead, or Celebrex (COX-2 inhibitors) if you need them and can get them.

One other thing: get one of those wedge-shaped seat cushions with the slot cut out.

Yes, the Advil can cause bleeding (plus straining can pop a vessle in your eye). If your backache is related to IBD, the Remicade will likely help, but it can take 3 months for the full effect.

I don't think these are symptoms of Remicade side effects. I've never heard of NSAIDs increasing adhesion/stricture formation, and actually more the opposite (with inconsistent results).
http://www.ncbi.nlm.nih.gov/pubmed/15973112?ordinalpos=...anel.Pubmed_RVDocSum
But you need to be careful of GI inflammation with them.

Jan

This message has been edited. Last edited by: Jan Dollar,

See this 2004 article in Am. J. Gastroenterol. by Shen, Fazio, Remzi, et al. at Cleveland Clinic on endoscopic balloon dilation (from the Introduction; requires access to the full text):

http://www.ncbi.nlm.nih.gov/pubmed/15571580?ordinalpos=...anel.Pubmed_RVDocSum

It says that the causes of stricture include "CD, cuffitis, ischemia, abscess, and NSAID use."

I cannot get to that article you cited, Jan -- I just get the Wiley cookie error page with both Firefox and Explorer.

I had both, an abscess and fistula. It sounds like an abscess to me. It could be a peritoneal cyst, also. Peritoneal inclusion cysts are thought to be caused by an accumulation of normal fluids in the scar tissue from abdominal surgeries. They are generally found in premenopausal women who have had abdominal surgeries!! I have a cyst now that is causing me terrible abdominal pain and lower back pain and nausea. So bad, I went to the ER. I take pain pills constantly. This cyst is hard to diagnose. It is somewhat rare. There are only a few Jpouchers that have this problem. I have been misdiagnoised for quite awhile. One IR tried to drain it and could not puncture it. I'll try again with Dr.Shlansky at HUP in Philly.

You can do a search on this topic to see all the symptoms. I hope you find relief soon.

Bobo, I'll have to take your word for it, since I don't have full article access. It makes sense that they can cause strictures, because they can cause mucosal damage, which can lead to strictures. I was thinking more in the terms of adhesions. I did find this abstract that mentioned the strictures:
http://www.ncbi.nlm.nih.gov/pubmed/17966896?ordinalpos=...anel.Pubmed_RVDocSum

But, I put in a more accessible link to an abstract about the adhesions in my post above regarding NSAIDs and reduction of adhesions. Most of the data is pretty old and mostly on animal studies.

Jan

Jan,

That's what I'm reading, too: Celebrex may help prevent adhesions, while ibuprofin may help cause strictures. Thanks for the links!

Bob

well,
i am beyond frustrated.
i tried loosening my stool...i drank grape juice boxes when i ate meals. then i had watery stool and lots of urgency.

for some reason, my muscles are seizing up and not letting much stool out... when the stool is liquid and i do not have to strain, my aching tailbone gets better. BUT now i am spending all my time in the bathroom -- i keep going to the bathroom every hour or two and only having small outputs most of the time. and now with tummy aches that you get with diarrhea...and every time i sit in my sitz bath and get my muscles relaxed, i can then have a small bowel movement. when i push even a little it aches at the rectum, but there is no bleeding...and my surgeon said the rectum area was nice and soft and seemed good...
so after a couple days of crazy diarrhea, i finally broke down and took one imodium. it thickened things up and stopped the bathroom marathon..but now i am starting to feel the aching tailbone again.

i don't understand why, after years of having a j-pouch, all of a sudden i can't get stuff out! it's driving me crazy and my specialist is on vacation still! it's not bad enough yet that i would go to emergency tho...


i had a fissure once that caused seizing of my muscles, but the fissure itself hurt and bled. so this seems different. i do have a fistula but nothing is going through it and it seems to be healing nicely. the surgeon said it doesnt seem infected or inflamed at all.

anybody have this feeling before?
any ideas? i don't know what to do...thicken the stool or keep up the grape juice??? so confusing

Niki,

Sorry to hear about this development, and I hope there's nothing serously wrong. How about trying a happy medium between grape juice and Imodium, which would be chicken-rice soup, bananas, and if too runny still, maybe a small amount of Metamucil?

thanks...
last night i had a stomach ache and could not go for hours.. im calling a doctor tomorrow but for today i think i just wont eat anything i know is really going to thicken things up.

Nikki, I hope you can get an accurate diagnosis soon!

Referring to the posts above on NSAIDS possibly causing structures, Bo Shen makes the same statement in the Spring 2005 Pouch-O-Gram in "Endoscopic Treatment of Ileal Pouch Strictures", under the section on "Defining A Structure":

http://cms.clevelandclinic.org/digestivedisease/documents/spring_2005_pog.pdf

so i went to the doctor's and came home balling my eyes out. he says i probably have pouchitis (even tho i have been taking antiobiotics that were working for the last year or so...still takikng them) and he put me on more flagyl-which makes me vomit. great. and he started saying that if we cant get my pouchitis under control i could lose my pouch....that really upset me. i have had chronic pouchitis for a couple years and tried antiobiotics and entocort...now im on remicade and i wonder if that could help pouchitis, or make it worse? anyways, hopefully this flagyl for the next 2 weeks makes a difference. i need some relief!

Remicade should help, not make it worse. Usually the worst it does is be ineffective or you get an allergic reaction to it. Is your doc working on the assumption that you have Crohn's? If so, this is not the ordinary pouchitis, but Crohn's of the pouch. How long since you have been scoped?

Have you read this article:
http://usagiedu.com/articles/pouch06/pouch06.pdf

Jan