This is part a vent, and partly I'm hoping you might have some ideas for me. I've been having diarrhea and abdominal cramping for almost a year. Last spring, I thought it was my Crohn's flaring up. I went for an MRE and it showed mild inflammation in my small intestine. My GI increased my Stelara from 6 to 4 weeks and I did a course of prednisone. This was the first time the prednisone did nothing. The diarrhea persisted. I have had elevated WBC for almost a year. My sed rate was on the high end of normal, and that some times is indicative of a flare, but CRP was fine. In December we did a scope and my intestines looked the best they ever have. The GI declared my Crohn's still in remission. Since I was having more side effects from the Stelara we backed down to 6 weeks again, and the side effects resolved.
I saw the GI again yesterday. She thinks is IBS. I take hycosamine for the abdominal cramping and that's effective, but I have anywhere from 1-6 BMs a day, and some are very urgent. My digestive track is either running fast or slow, with no in between. If I try taking Imodium to slow it down then it grinds to a halt and I'm battle constipation. The GI keeps pushing fiber on me, and I have never really found fiber helpful. When I was a kid I was diagnosed with spastic colon and the fix was to increase my fiber, but it never helped. I've been taking 4 teaspoons of benefiber every morning. I tolerate it better than psyllium.
I can't live like this. I'm so frustrated that I cried during my appointment. The GI then pushed antidepressants on me to treat both the diarrhea and my mood. I tried antidepressants for mood and migraines and I never tolerate them well. So then she referred me to a social worker. I have a therapist. And honestly I don't think being upset at pooping your pants more in the last year than in your life, as well as not being able to make plans, is unreasonable. This GI is an IBD specialist and I think she's good with that, but I am not happy with how this is being handled. I realize it could very well be IBS, but this has gone on longer than I have ever experienced.
She did blood work and my sed rate was just outside of normal at 41. It was 31 during the summer. My WBC was back to normal, and CRP was 10, down from 15 over the summer.
She mentioned I had some overlap with SIBO symptoms and offered to have me try Rifaximin, but said it can be expensive and hard to get insurance to cover it. It felt like a bit of a grasp, but maybe I should try that. While this could be be "just" IBS, my "gut" tells me there's something else going on.
Any ideas? She referred me back to a nutritionist as well. I did FODMAP years ago, and I'm not in a place where I feel up to going done a restrictive eating path. Last time pushed me towards disordered eating. I'm dealing with chronic migraine on top of this, and I don't have a lot of energy to mess with my diet.
So frustrating to be pushed towards things that don't take the whole picture into consideration.
Diagnosed w/Crohn's in 2005. Allergies, hypothyroidism, hypertension, migraines. Gall bladder removed 8/15; hysterectomy 9/21. Started Stelara 7/21
Have tried: sulfasalazine, asacol, pentasa, entocort, imuran(allergic), humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia, entyvio, MTX & Arava for joint pain
I'm sorry you are going through all of this. It doesn't sound like complete remission with your Sed rate slightly elevated and the MRE showing inflammation. I had bowel resection surgery in 2014 for a stricture, and since then I have been considered to be in remission, although last year my colonoscopy showed inflammation at the surgery site and the biopsy was positive for active and chronic crohn's. The doc still considers it very mild and not worthy of treatment. I struggle primarily with IBS -C but like you it sometimes cycles into diarrhea. I have found antibiotics helpful during the diarrhea stages. I have taken Flagyl, which is much cheaper than Rifaxamin. The Flagyl helped me many times but I think I developed a tolerance to it and it isn't as effective, I also have found VSL-4 probiotics helpful for diarrhea, but it sometimes sends my flying into constipation so it is challenging.
I have done FODMAP, which helped me realize that I'm intolerant of dairy but handle gluten fine. I also have to limit beans, onions and garlic as they all cause gas. The Fodmap diet is an elimination diet to discover what foods are triggering for you...it is not a diet that is meant for you to remain on forever. If you can find a nutritionist that understands Crohn's and IBS it may be helpful, but I have never found nutritionists to be all that helpful for me. And you have every right to feel sad and cry about what you are going through. It doesn't necessarily mean you need antidepressants. Glad to hear you are in therapy.
I am a retired therapist myself, and I have had to work on not blaming myself when I feel sick. I try to sort out living my best life, which means trying to simultaneously do interesting things even when in pain. Mornings are my hardest time, and now that I'm retired I try to only commit to actives that start after noon. Even then I struggle sometimes but I try hard to find that balance between caring for my chronic gut issues and having a good life.
I share your frustration big time with the challenges between differentiating symptoms of IBD vs IBS. I just had an MRE (no results yet) because I am in pain in some fashion every day and it is exhausting to live like that. My doc ordered the test, but I think he suspects that it will be normal as my blood and inflammation markers all look good, I have gotten good at advocating for myself so I know that I've done all the testing that might help and accepting it when the doctors don't have anything to offer me. I hope this helps!
I have done FODMAP, which helped me realize that I'm intolerant of dairy but handle gluten fine. I also have to limit beans, onions and garlic as they all cause gas. The Fodmap diet is an elimination diet to discover what foods are triggering for you...it is not a diet that is meant for you to remain on forever. If you can find a nutritionist that understands Crohn's and IBS it may be helpful, but I have never found nutritionists to be all that helpful for me. And you have every right to feel sad and cry about what you are going through. It doesn't necessarily mean you need antidepressants. Glad to hear you are in therapy.
I am a retired therapist myself, and I have had to work on not blaming myself when I feel sick. I try to sort out living my best life, which means trying to simultaneously do interesting things even when in pain. Mornings are my hardest time, and now that I'm retired I try to only commit to actives that start after noon. Even then I struggle sometimes but I try hard to find that balance between caring for my chronic gut issues and having a good life.
I share your frustration big time with the challenges between differentiating symptoms of IBD vs IBS. I just had an MRE (no results yet) because I am in pain in some fashion every day and it is exhausting to live like that. My doc ordered the test, but I think he suspects that it will be normal as my blood and inflammation markers all look good, I have gotten good at advocating for myself so I know that I've done all the testing that might help and accepting it when the doctors don't have anything to offer me. I hope this helps!