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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.

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Jan DollarJan DollarModerator, RN, retired
Pain can be pretty vague and the only way to pin it down (and sometimes that is not successful either), is to get an exam and possibly some imaging to rule out anything serious. Even if this is Crohn's, she is on appropriate maintenance for that. No point in thinking about drugs she cannot tolerate. If in fact this is an IBD flare, then a short course of prednisone or maybe Entocort (budesonide) will be the way to go.

She's been through this stuff enough times to be able to tell when it is different from an obstruction, so I would trust her on that.

Gee, she's not pregnant is she?!

Jan Smiler
Jan Dollar
B beckysmomMember
I don't know jeane, thanks. It's been 5 months since the last surgery and this pain just started 2 weeks ago. After the surgery in Jan 2013 she started with pain about a month later and then that continued off and on with blockages also until her resection in July. After the July resection she was in a lot of pain but a month and a half after that she felt really good. Now she started with this pain again. Also last time everyone hoped it would just be adhesions but when the surgeon went in and it turned out to be a stricture and he said she hardly had any adhesions. He has always said she hardly had any adhesions with each surgery.... Just don't know.
B
B beckysmomMember
Thanks Jan. She is in finals now at her PhD program and she will have to be near death's door to schedule a test, but she is scheduled to see her surgeon on 12/28 and has calls in to GI and surgeon about a plan asap.

No pregnancy. She is going to ask the GYN about the pelvic pain if it continues, this pelvic pain just started as an "add on" this afternoon!

She did feel pretty bad over Thanksgiving when she was home and we went of a local ER and they did a plain abdominal xray that looked okay. Her hemoglobin was down to 9.8, but she also had her period at the time.
B
skn69skn69Member
Beckysmom,
I know that we automatically go to the known and assume that this is pouch or IBD related but could it be something as simple and an ovarian cyst or endometriosis? We forget that we can get 'normal' illnesses too that are not 'us' related.
Maybe a visit to the Gyn and an ultrasound could give her a response. I suspect that we tend to have more problems in that area too due to all of the abdominal surgery.
I was having horrible pain at her age and just assumed that it was my pouch. It turned out to be ovarian cysts and they put me on progesterone to deal with them.
Just a thought....
Hope that she feels better soon
Sharon
skn69
B beckysmomMember
Thank you Sharon. 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...
B
skn69skn69Member
It wouldn't hurt for her to see her Gyn...Have we asked the question about her Galbladder function? It could be responsible for post meal pain without effecting her output. Sometimes it doesn't even show up on tests..just a thought. She might want to try cutting out fats and spices for a couple of days and see how she feels then...if she drinks a glass of hot lemonaid (squeeze a lemon into a glass of hot water every morning and add a tsp of honey (optional). It helps clear things out if the galbladder is the problem...is she having any back pain? Pain in her shoulder or neck? Those can also be signs of galbladder function.
Hope that you find out what this is and get her feeling better.
sharon
skn69
13 Years & Counting13 Years & CountingMember
Thought I'd share a "remedy" from my very dear friend Mary who came to America via Italy when she was 18. I used this when I had my last obstruction & it did ease the pain & within a few hours of drinking it the obstruction cleared.
Boil some water & add 1 or 2 bay leaves with a touch of honey. Drink it like a cup of tea.
It's worth a try, even if it just makes your daughter feel better for a little while.
13 Years & Counting
B beckysmomMember
Thank you Liz, no motility issues that we know of. She had an upper GI with a small bowel follow through w barium in March and then a double balloon endoscopy in April.

Thank you Sharon and 13, I will give the remedies to her!

Sharon, when she was 16 she had a test on her gallbladder and they saw a small stone but it wasn't an issue, I think something about it not being in the duct or something.
She doesn't have pelvic pain now, that was just one day. She has pain after every meal.

She has a scope with possible dilation scheduled for 12/19, she comes home on the 18th. This has to stop!

Does anyone know if there is anyway to STOP strictures from forming?
B
13 Years & Counting13 Years & CountingMember
That's good news that all looks fine! Of course doesn't answer why or what caused the pain which I imagine is frustrating.
I feel pretty good, but then again, I've not felt sick except for the obstructions. The pain in my hip & lower back at times is awful, but I don't allow it to hold me back. Decided to stay w/ Drs. Chessin & Legnani...didn't seek any other opinions. Scheduled for dilation 1/13 at Mt. Sinai. Hopefully they're correct & the stricture can be opened. Thank you for asking!
I do hope your daughter is on a path with MUCH better days ahead!
13 Years & Counting

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