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intestinal pain/pelvic pain, help

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Posted 12/7/2013 12:55 AM (GMT 0)
My daughter had a strictureplasty in Jan 2013 and then a resection, 4 cm, in the same area in July 2013. Now, for the past few weeks she is having on and off intestinal pain and today pelvic pain. She has had blockages in the past and she does not feel like she is having even a partial blockage, everything is moving through fine and no stomach distention or bloating. She is afraid this is another stricture again, but it does not feel like it has in the past and then today she has pelvic and back pain in addition.

Doctors still keep saying there is no sign of crohns. She has had the strictures at old surgical sites (jpouch 10 years ago and old ostomy site) I don't know if she does have inflammation could it be treated with meds? She is on augmentin and pentasa maintenance. I'm hoping it is inflammation that can be treated with meds. but what meds? She almost died from PCP while on 6mp and steroids so no drs have wanted to try remicade, humira, etc. She has an appt on 12/18.

We don't know what to do anymore. Thank you.
Posted 12/7/2013 2:24 AM (GMT 0)
Wow I didn't realize she's had her j-pouch for 10 years already!

So what are the augmentin and Pentasa for if they think no Crohn's? Has she had small bowel studies showing inflammation? How is she on adhesions? Endometriosis/fibroids/ovarian cysts/all that lady stuff?
Posted 12/7/2013 2:33 AM (GMT 0)
Hi Liz! They have her on augmentin and pentasa because of past pouchitis, but last look in August her pouch looked great. So they didn't want to rock the boat.
Surgeon said she had very little adhesions. She did have an ovarian cyst about 2 years ago that showed up on a ct scan, but repeated ultrasounds didn't show it. I would guess she has endometriosis with all the surgeries she has had.
Posted 12/7/2013 2:39 AM (GMT 0)
Sorry I can't be of more help :-\ I would crosspost to Crohn's forum and Ostomies forum as there are very few with surgery experience here. All I can say is that I might push for a pelvic/abd MRI... no real downside for her and the potential of discovering something, just sometimes hard to get doctors to order it due to cost.
Posted 12/8/2013 6:08 PM (GMT 0)
I've had several abdominal exploratory surgeries related to pelvic pain and my intestinal issues. I always develop abdominal adhesions and strictures and I had some strictures on a colonoscopy many years ago as well.

Anyway, after I had a c section it got worse. In a flare everything would hurt. I did two things that really helped.

1. 3 sessions of Mayan abdominal massage. 3 sessions of Chi Nei Tsang.

2. Took proteolytic enzymes. Products like wobenzym can break up the strictures over time.

Post Edited (PathogenKiller) : 12/8/2013 2:54:15 PM (GMT-7)

Posted 12/8/2013 7:57 PM (GMT 0)
Is it possible the pelvic pain is related to ovarian cysts or mittelschmerz? Or a vaginal infection? Is she sexually active? Is she ovulating?
Posted 12/8/2013 8:08 PM (GMT 0)
Could be adhesions.

Sue
Posted 12/8/2013 11:16 PM (GMT 0)
Thank you ladies for your input.
She seems to have pain after she eats, but everything is moving through. In the past, with a stricture, she would have pain after she ate but then she might not even be going to the bathroom as much, that is not the case now, the bathroom part is normal.

She was talking about calling her GYN also.
A year or 2 ago they saw an ovarian cyst on a CT scan and then she had 2 ultrasounds 6 months apart so the dr followed it, but last ultrasound it was gone. Also she never had any discomfort from it, she was surprised when it showed up on the CT.

It's very concerning that it happens after she eats, even just soup...

Kazbern, She just had her period a week ago.

Pathogenkiller, You posted - "Took proteolytic enzymes. Products like wobenzym can break up the strictures over time." Is there really something that can break up fibrous strictures? I have to look this up.

Suebear, Not sure about adhesions, the past 2 surgeries, one a strictureplasy and then 7 months later, in the same spot, a 4 cm resection was needed. We had hoped, along with the drs, that it was just adhesions and the surgeon could go in a cut them and each time it turned out to be another stricture and each time the surgeon also commented that she had hardly any adhesions.
Posted 12/9/2013 12:03 AM (GMT 0)
beckysmom, it can get really confusing when ovulating women have bowel disease. All of the organs are colocated and the nerves in the pelvis don't seem to care what causes the pain, they just report it. sigh.

It might be helpful to have her keep a journal of her menstrual cycle and her pelvic pain. Maybe some patterns will become evident. But if she's having pain when she eats then I think it is something to push with her GI. What evidence do they have showing it is not Crohn's? Have they been following her with bloodwork? When was her last imaging study done?

Why is she on augmentin? Is this an abx used for IBD maintenance? I'm not familiar with that one for IBD.
Posted 12/9/2013 2:54 AM (GMT 0)
Scar tissue is scar tissue and many enzymes dissolve fibrin and proteins.
Posted 12/9/2013 11:03 PM (GMT 0)
kazbern, thank you. My daughter had a upper GI series with barium follow through in March 2013 and no sign of crohns also had a double balloon endoscopy in April, same thing, no crohns. Then she had a resection, 4cm in July '13, for a stricture that had formed after her strictureplasy in Jan '13.

She doesn't have the pelvic pain anymore, that was just one day. She has pain after every meal. She is on augmentin for her jpouch, maintenance for past pouchitis. She is schedule for a scope and possible balloon dilation, if needed, on 12/29.

How can she or is it possible to stop strictures from forming??????????? This is so frustrating, she can't keep having surgeries! As of July"13 she had 3 in 18 months, all for strictures. Why do the strictures keep forming? More important, how can she stop them?

Pathogenkiller, sorry I just don't understand...are you saying that the enzymes can dissolve fibrous strictures? Thanks.

Post Edited (beckysmom) : 12/9/2013 4:09:28 PM (GMT-7)

Posted 12/10/2013 12:55 AM (GMT 0)
I think she is going to have to talk to the docs about biologic meds. Surgery is not a cure for Crohn's. Some people get a good remission but not everyone by a long shot. I'm so sorry she's going through this. People do really well on the biologics.
Posted 12/10/2013 5:02 AM (GMT 0)
YES. I am saying that proteolytic enzymes can soften and dissolve fibrin/fibrous tissue/scar tissue.
Posted 12/10/2013 5:14 PM (GMT 0)
thank you!
Posted 12/10/2013 5:51 PM (GMT 0)
It needs to be enteric coated like wobenzyme. Adding an enteric coated serrapeptase in would be good too.

THE CAVEAT, these enzymes can thin the blood. Most of us with UC could use some blood thinning, clotting is one of our problems. But all enzymes should be discontinued before any planned surgery or if you take a blood thinner...
Posted 12/10/2013 6:10 PM (GMT 0)
For what it's worth, I can't find any evidence of bowel strictures being treated with proteolytic enzymes. In fact all I've found is a study of CF patients where high dose pancreatic enzymes caused large bowel strictures. I wouldn't try the enzymes without discussing with a doctor.
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