- Joined
- Dec 3, 2014
- Messages
- 39
Hello all,
I'm checking back in for an update.
After hospitalization for multiple intestinal blockages and follow-up colonoscopy in October I was diagnosed as probable Cronh's. There was significant chronic inflammation throughout the biopsies, but no crypt abscesses or granulomas which has my GI very confused. I tried Pentasa but it really did not help much at all.
Last week I was diagnosed with gastroparesis after a stomach emptying study - GI says it's not severe, and suggested low fiber/low residue diet to manage. I also have Bethanacol but I will not start taking until CT/ENT next week as I believe I have a stricture and I do not want to have another obstruction. I ate a few pieces of pineapple yesterday, and paid for it all night long. I was also diagnosed with esophagitis from reflux in Upper scope last week. I have very, very low intestinal flora which I am taking probiotics for, but I think I may be dealing with SIBO due to gastroparesis. I have constipation, almost never have D but I do have episodes of intense D like pain and contractions throughout my tract but the stool is either well formed but oily/mushy, or hard. The fact that I have very low intestinal flora and do not have D also has my GI confused. Very painful, and my abdomen gets so distended sometimes it is just awful.
I'm also showing elevated ANA levels, and I'm waiting for rheumy appointment in a month to retest; by the pattern of the titer it points to progressive systemic sclerosis, but it was low positive and my sed rate is not extremely high.
I finally am starting Predisone today. I am not thrilled with it, but I'm hoping it helps.
I also have night sweats, heat intolerance (I get fevers after being out in the sun), and some other symptoms such as painful legs and feet which I think might be from poor adsorption/malnutrition. Vitamin B is normal, folate is high. I recently started losing weight, but my appetite and bm’s have remained pretty much the same. I’ve been hospitalized twice since October for severe acute bacterial infection of unknown origin. The one thing that always helps me feel like a million bucks is Cipro. All of my symptoms go away for a few weeks and then they slowly start up again until my WBC spikes and I land back in the hospital. I’ve been tested for all of the usual intestinal bacteria suspects.
This has just been a progressive nightmare, and dx is so slow. However, I stay positive because I learned that negative emotions just make me way worse. I'm trying to stay active, find an eating plan that works for me. It's all so confusing, does anyone relate to this set of symptoms with Crohn’s or another IBD? Any suggestions for additional testing? Never had Calprotectin, and have my first CT/ENT next week. Thanks for any and all suggestions!
I'm checking back in for an update.
After hospitalization for multiple intestinal blockages and follow-up colonoscopy in October I was diagnosed as probable Cronh's. There was significant chronic inflammation throughout the biopsies, but no crypt abscesses or granulomas which has my GI very confused. I tried Pentasa but it really did not help much at all.
Last week I was diagnosed with gastroparesis after a stomach emptying study - GI says it's not severe, and suggested low fiber/low residue diet to manage. I also have Bethanacol but I will not start taking until CT/ENT next week as I believe I have a stricture and I do not want to have another obstruction. I ate a few pieces of pineapple yesterday, and paid for it all night long. I was also diagnosed with esophagitis from reflux in Upper scope last week. I have very, very low intestinal flora which I am taking probiotics for, but I think I may be dealing with SIBO due to gastroparesis. I have constipation, almost never have D but I do have episodes of intense D like pain and contractions throughout my tract but the stool is either well formed but oily/mushy, or hard. The fact that I have very low intestinal flora and do not have D also has my GI confused. Very painful, and my abdomen gets so distended sometimes it is just awful.
I'm also showing elevated ANA levels, and I'm waiting for rheumy appointment in a month to retest; by the pattern of the titer it points to progressive systemic sclerosis, but it was low positive and my sed rate is not extremely high.
I finally am starting Predisone today. I am not thrilled with it, but I'm hoping it helps.
I also have night sweats, heat intolerance (I get fevers after being out in the sun), and some other symptoms such as painful legs and feet which I think might be from poor adsorption/malnutrition. Vitamin B is normal, folate is high. I recently started losing weight, but my appetite and bm’s have remained pretty much the same. I’ve been hospitalized twice since October for severe acute bacterial infection of unknown origin. The one thing that always helps me feel like a million bucks is Cipro. All of my symptoms go away for a few weeks and then they slowly start up again until my WBC spikes and I land back in the hospital. I’ve been tested for all of the usual intestinal bacteria suspects.
This has just been a progressive nightmare, and dx is so slow. However, I stay positive because I learned that negative emotions just make me way worse. I'm trying to stay active, find an eating plan that works for me. It's all so confusing, does anyone relate to this set of symptoms with Crohn’s or another IBD? Any suggestions for additional testing? Never had Calprotectin, and have my first CT/ENT next week. Thanks for any and all suggestions!
Thanks so much!
