- Joined
- Sep 8, 2017
- Messages
- 1
I'm new here so please bear with me if I accidentally say something I shouldn't. I've had Crohn's disease (CD) since sometime in the 80s. It wasn't correctly diagnosed until 2006, but I know it goes way back because the symptoms were identical. My CD has always been located at the stomach outlet, which is why it was so hard to diagnose. They always told me I had ulcers & I had three "ulcer" surgeries before I was finally diagnosed with CD. Basically, the stomach outlet would become so inflamed that it swelled shut & nothing would pass through. I remember one time way back when they took a barium x-ray to find out what was going on in my stomach. When I swallowed the barium solution, all they saw was a cloud of barium dissipate into a totally full abdomen - nothing had been passing through, and so the whole abdomen was full of liquid. Anyway, fast forward to 2006 when I kept blocking up again & I got a new GI doc. He went in with an endoscope, and did a balloon dilation of the outlet. It was very successful - for about a week, and then I was blocked up again. This cycle repeated for about four weeks, and he finally said that continuing on that way wasn't practical, so he suggested surgery. It was basically bariatric surgery - same as they do for weight loss, though I didn't have a weight problem. The surgery went poorly, but long story short, it solved that particular problem. In place of a blocked outlet, I now had chronic anemia, continued weight loss, near constant nausea, and multiple other problems that have made life miserable. After a year I had to go on medical retirement (I was 62 at the time, so early retirement that I didn't exactly desire). Fast forward to now, I'm 71 years old, and struggling with multiple problems & life "ain't easy". I went on a sequence of biologics (I have RA in addition to CD), starting with Enbril, then Humira (maybe the other way around?), and now Cimzia. I had thought I was in remission until just tonight when I had a thought that scared the crap out of me. I've been having increasing trouble swallowing over the last month or so, and the thought struck me a couple of hours ago that it might be related to CD. That's what brings me here at 2 am, looking for answers. The details of the swallowing are strange. I don't especially have trouble when swallowing food or liquids - except when I try to swallow the natural secretions that occur in our mouth all the time - the saliva, or other very small volumes of liquid. I feel the need to swallow, but I can't seem to get it started, while the volume seems to increase & I sort of get panicky. Sometimes after 5-6 unsuccessful attempts, the reflex will kick in and I finally swallow - problem solved for that time. In the midst of that struggle, if I take a quick drink of water or whatever, the swallow reflex triggers and I'm OK. But, there's always that little bit of fluid that doesn't get swept up in the act, and remains. The follow-up swallow puts me right back where I started. I initially blamed this problem on the opioids that I take regularly (RA, broken bones, osteoporosis, etc., - long story). But my pain management team doesn't seem to recognize that as something they see in others. This evening I started wondering if something else might be going on, and whether I should see my PC docs for the problem. Then just about bedtime, the connection to CD hit me & so here I am.
Any advice? Anyone else experienced this strange kind of symptom? I'm starting to really worry whether this might continue on, or get progressively worse. It's only a very frustrating bother right now, but if it progresses, I feel like I could be looking at the end unless someone has a miracle up their sleeve.
Sorry if I've bored you all - please pass any comments along - helpful or otherwise. Thank you!
Any advice? Anyone else experienced this strange kind of symptom? I'm starting to really worry whether this might continue on, or get progressively worse. It's only a very frustrating bother right now, but if it progresses, I feel like I could be looking at the end unless someone has a miracle up their sleeve.
Sorry if I've bored you all - please pass any comments along - helpful or otherwise. Thank you!
