I guess no one can relate??????

Well, you know I haven't this sort of complication. I suppose it is of no consolation to know this is a rare occurrence. In my mind, it is one of those "if it walks like a duck..." sort of things. If the pain feels the same, I think it is likely it is the same thing going on. She's experienced enough different types of pain by now to be able to judge the different qualities.

The big question of the day, I think, is if this is due to ischemia, what is the cause of the ischemia and how do you prevent it from extending?

What did her docs say at her appointment? I sure am sorry that her resection wasn't the end of her problems.

Jan

Thank you Jan for responding. This is SO frustrating for my daughter and for me not being able to help her!
Both Drs. said she is just 3 weeks post op and that the pain should lessen as she heals. Since she was in pain for almost 5 months with tests being run to try and diagnose this and nothing being found on the tests, the Drs are saying that her intestines could take a while to get back to normal, kinda like a hypersensitivity issue. As of yesterday the plan is to give it a few more weeks and then if there is no improvement the surgeon will take a look via scope. He did say that sometimes with healing a person can narrow/ scar down.

This is all so unsettling, she is due to return to college 3 weeks from today and he will look right before she goes , if needed.

I keep telling myself that her incision wound is not healed yet (she developed a large hematoma behind it and it had to be opened and cleaned out and now has a wet to dry packing), even though the wound gets smaller with each change, so the insides might not be healed yet either and maybe swollen like the dr says from the surgery.

As far as ischemia, there are just supposing it might have been that, but they don't think it is crohns since there is no other signs of it.

She even asked should she just go to an ostomy and was told that she should be fine now, after she heals completely.

We are trying to remain positive....this is very scary.

Thanks again Jan.

I'll keep my fingers crossed for her. I forget, but they used Seprafilm or something similar to prevent adhesions this time, right? Just a thought, since 2-3 weeks is about the time table for adhesions to form. And adhesions can be a cause of ischemia.

Here is a link to a comprehensive article about ischemic bowel. Try not to read too much into it, since most of the causes would not apply to Becky, but it tells how they can check for this stuff. She has been tested for lupus and similar diseases I presume? Just throwing it out there.

http://intl-radiographics.rsna...content/20/1/29.full

Jan

Thank you Jan for the article. I will read it again and bring it with us next visit.

It's the Gi that is guessing it may have been ischemia in that area. But if the strictureplasty didn't work for her, for whatever reason, she narrowed/scarred down when healing...and the bowel above it was dilated and for months like that. And she felt at times like if she massaged in a downward fashion that she actually pushed the food through that area, then maybe it could still be "getting" better from all that trauma?? Who knows, just want her pain to stop or at least lessen as time goes on. At least the bloating has decreased.

No, seprafilm was not used. Her surgeon does not like to use it with a resection/strictureplasty because he says it can cause problems at that type of surgical site. He did say that this time and the last surgery, she had hardly any adhesions at all, so that is a good thing.

She has complained of the pain since day one after this surgery. This is why we are hoping everything was so messed up and dilated above that area for so long that it is sore and also it all has to heal from the resection.

She was tested a few years ago for lupus and saw a specialist for this. She was negative and her tiredness was said to be due to her anemia and the bleeding ulcer that would not heal that she had at the inlet to her pouch. 3 blood transfusions over 18 months and iron infusions also. That is behind her, her surgeon scoped her prior to the resection and said her pouch and the inlet he changed looks great, also the ulcer is so tiny now and almost gone!

Thanks so much for responding Jan. It means a lot, even if you can't relate, you always try to help and educate us.

Best to you.

That is a very good factoid that she did not have much in the way of adhesions found. That is because people tend to be pretty consistent in that regard. Basically, once you are known to be a big adhesion former, you'll remain one. Of course, if there is infection in there from peritonitis or chemical irritation (occasionally happens with Seprafilm), that would make anyone develop a large number of adhesions.

So, yeah, this could just be one of those "pain memory" type of things, where the nerves are hypersensitive, and it will take time for that to settle down. It could be a more permanent "pain syndrome" type of thing, but let's not even go there yet. I say that, because they actually found something really wrong in there and fixed it. If it was a pain syndrome, there would not be a physical issue to deal with.

Sounds like her docs are on top of things. So, again, fingers crossed.

Jan

I hope Becky gets to feeling better soon and her nightmare can go away soon.

Yes Jan, that is what he had said about the nerves and things settling down. I didn't remember that part until you said it. My daughter did ask could it be a permanent thing because of the length of time it was occurring and he said he didn't think that would be the case, things just need time to heal.

Thank you Paulette. Hope she will feel better soon, you also.