Totally fed up.

[mascarim]

So. I had a resection of my ileum 2 years ago now. And for a while I was feeling great but then I started getting the same pain as before. And I still have it. I was hospitalized 6 times this year. But they can not figure out why I am still in pain. They've done colonoscopies. endoscopies. CT scans. MRI's x-rays. A small bowel follow through and nothing. They even thought I could have nerve damage and put me on an anti-depressant that is known to help people with nerve pains. And that has done nothing but make me irritable. So yesterday I did a capsule endoscopy. And now I'm waiting on the results. But I'm so afraid they will find nothing yet again. And I will still have pain with no ideas as to why. Even right now I'm in pain. I just don't know how much more I can take of nothing making the pain go away. The only thing that they did see was some irritation near my old surgery site. So now I'm just waiting on the capsule results. And I just hope they would find something so I have an answer. SO FRUSTRATED.

 

[DJW]

I understand your frustration. I hope the CE gives you some answers so you can start feeling better.

Sending you my support.

 

[Muppetgirl]

I hope that you do get some answers. If it is the same pain as before then I would think that increases the likelihood that the irritation at the surgery site is to blame. I appreciated an answer would be best but if they cannot give you one, perhaps it is worth considering a pain team referral. Getting on top of the pain might be the next best thing. Good luck.

 

[mascarim]

Can I ask what a pain team all does? I've now heard a few people suggest it but I'm never sure quite what they all do and what kind of things they do.

 

[Muppetgirl]

I'm sure they vary by area but they are usually multi-disciplinary, which allows them to come at the pain from as many angles as is necessary in each individual case. Most usefully in regards to surgical pain...they are led by anaesthetists who specialise in pain who prescribe the best range of medications. A lot of changes can occur in response to surgery that aren't readily discussed. Physical therapy can also help.

One thing I didn't think of before is the old adhesion problem. If your pain is around the join this might be the problem. If the colonoscopy was clear then it would pelvic adhesions. They don't show on scans, although scans can be suggestive of them. However, I think it was unxmas who pointed out that adhesions are a bit of a go to response when they are out of ideas sometimes. They are not a problem for everybody.

I know how miserable unrelenting pain is. I hope you find a solution.