Has anyone been put on antidepressants for possible "phantom pain"?

[mascarim]

Hi all. I am completely lost as of late. About a year and a half ago I had to have a very damaged part of my terminal ileum resected. The piece removed only ended up being between 4 and 6 inches. Starting this January about a year after surgery I started being in a lot of pain again. I actually ended up being admitted to the hospital 5 times this year already. After the first bout of pain I was given a colonoscopy. Everything came back clear from there. The next 3 times I was admitted they did plenty of xrays, ct scans, and MRIs but still could see nothing at all. Only one time did my blood tests show very slightly elevated inflammatory markers, but since then all of my blood tests have been coming back normal. My GI ended up pushing my Remicade infusions closer together (once a month now) and upping the dosage. Through all of this I still had pain happening. I find the pain to be very similar to the initial pain from when I was first diagnosed but A LOT less severe, still very bothersome though. I do have diarrhea on and off as well but never severe, very mild and never really watery or more than 3 times a day. Last week I was admitted again, only to find again no inflammatory markers, nothing on xray, no infections ect. I also found out my GI was quitting and didn't tell me, because of this I got a new GI. So while I was admitted he decided to to an upper GI series which I had never done before. He wanted to make sure there were no adhesions, narrowing, ect. ALAS again, this procedure showed NOTHING. So a few hours later he came in suggesting that I may be having some type of phantom like pain. Like my intestines are having a mind of their own and producing pain that does not really need to be there. Essentially damaged nerves. He said that antidepressants could possibly help that, so on them I went. Yet another pill to take every day. I am also having another colonoscopy next week just to check again, although I won't be shocked if that shows nothing. I am just wondering has anyone else ever experienced anything like this at all?! It is beyond aggravating. And ultimately I am frustrated that all things point to the disease not being active, yet I am still having pain and such. If anyone else has ever experienced anything like this or at least heard of something like it advice/stories/information would be really appreciated!

 

[nitty]

Hi!

I'm afraid I can only comment on the treatment, rather than the symptoms you are having.

I used to be a nurse on a vascular unit where many of our patients had leg amputations and there were a number of drugs that are generally known as antidepressants that were of some use in treating phantom limb pain. They are also used for other conditions where nerves are behaving abnormally and causing pain (I have a family relative who is struggling with central post stroke pain and she has been trying various drugs, including antidepressants).

It's worth a try, even if it only rules things out in the process of finding the right treatment. My relative is now looking to try a clinical cannabis, which is available on the NHS where she lives.

Good luck.

 

[allpurpose]

nitty already made a good post so I just want to be another voice to say that phantom pain is something that is real . No experience with it from internal surgery but if it happens from amputation out side the body one would have to think it would be the same for inside the body. It sounds like they have taken your pain seriously and tried to find a cause with out success. Damaged nerves can cause all kinds of pain even though you are healed up . I damaged a nerve(severed it) my self and it was well after the wound healed that I started getting all kinds of pain from it. That pain completely gone away now except when that area gets really cold .

Hope the meds help you out