It has occurred to me that when I was behind on my Humira...waiting for it, I was starting to have problems with my stomach a lot and now the pain and inflammation is subsiding. It makes me wonder. But I have just had a scope done by my favorite G I dr. and I have also been seen by my other
G I dr. who is a motility specialist so I know I do not have Crones disease My motility specialist was the one who convinced me to start the Humira as his son is on it, he told me, and when I take it I will feel better and have some energy back. He was right. And it has helped very much for my pain.
Hi water fairy - as you have a GI and motility specialist, do you also have a diagnosis of a GI disease? Could the Humira be treating that, even though its not tested for it?
Also, I’ve spent quite a bit of time investigating crohn’s, and just because your scope looks clear doesn’t exclude you (sorry). Did they do histopathology? Have you done sequential faecal calprotectin? Ie a measurement prior to humira, and another after it has kicked in? Crohns is notoriously difficult to diagnose. Best thing is though, you have humira, so it will probably be a long time before you need to think about it seriously (my GI raves about - reckons it keeps patients in remission for ten years or more!)
Jen Hi there. I will have to ask my GI dr. if he did those tests. I thought that with Crohn disease you lose weight? So far the GI docs have diagnosed me with IBS and motility issues. I feel as though it is nerve damage from what seems to me to be shingles or some type of extremly painful out breaks of ulcers in my GI tract. That is just a therory on my part. I had shingles on my rib right below right breast a few years back and since then I feel like everything gets stuck on that side. I need to explain that this all started in 2001 immediatly after a swimming accident I had on vacation. I had horrible headaches couldnt sleep, high bp, vomiting, couldnt eat and lost 30 lbs in in just 8 weeks. and my dr. was young and frustrated and could not diagnose me. That is when I met my GI doc and he ran a whole bunch of tests and found my intestines were not working but there did not seem to be any type of pathology they could find just that everything was moving so slow. I was put on trileptal and I could sleep, my BP went down, and my GI tract started working better and I was able to have a bm again like normal. It felt like brain damage to me. I would feel it at the top of my brainstem. I had MRIs and cat scans and all they found was a Non-invasive and non-secreting pituitary microadenoma. I had a few MRIs to watch it and I was told that it should not be causing any problems for me. It has been over the past 12years that I have developed fibromyalgia and then the psa.
I will call my GI doc and ask him about the tests that he has taken. I get a GI scope every 5 years now but so far it is inflammation and motility that is my diagnoses.
Hi water fairy - you certainly are right that the initial episode, which responded to trileptal, did not sound like crohns (or any other IBD). I guess I just meant that just because you didn’t have an IBD before, doesn’t mean that you haven’t developed one, and a scope may or may not be conclusive.
The reason I questioned the assumption that you don’t have crohns (or a variant) is that there’s no evidence that steroids help ibs, so it’s a bit hard to see why humira would help it (but they both do help IBD, if you see what I’m getting at).
However I also didn’t mean you would need to get it checked out now - the humira is clearly working on your gut inflammation, so a) you’re being successfully treated if you do have an IBD - why bother, and b) while you are on that humira, nothing’s going to show up in tests anyway.
It was more just a “what if”, but it might be important to challenge that assumption if you have to go off the humira permanently for some reason.
Hi Jen-- have IBD that seems clear and forgot to mention that I had cyclic vomiting for about 3 months until I started to talke the trileptal which I don't take anymore. I developed the side effect of double vision. To keep the spasms from causing the problems I had I now take carbamazapine.
I had a scope in April and everything was fine and then I started the Humira for the first time right after that. I have been what if ing for years now. and I think I developed the fibro and Psa because of the initial trauma and not being treated in the beginning for the head trauma..I am confused.. Sometimes I feel like we will never really know what happened to my body. Autoimmune diseases are weird. Difficult to diagnose and difficult to treat. I appreciate your input as I head-scratch a bit about this struggle we all share in common here. I often think hmmm......what more can we figure out.