Hello! I am actually posting for my husband (who is unaware). He isn't fond of talking about
this stupid disease with people outside of our close circle and the numerous doc's that don't seem to know much about
it anyway. I just joined tonight and I have read through a few posts, the common thread being complete frustration it seems. I just don't understand how a disease that affects this many people and causes this level of devastation is so poorly understood?
Long story short - my hubby has had Crohn's since he was 14... He is now 38. Surgery at 14, then no meds, complete remission for ten years until his second surgery. Multiple flares since that second surgery but mostly managed with a slew of medications and the dreaded Predisone taper. Last fall he was started on a steroid taper for a flare that was relentless. After months of trying to get him off the steroids unsuccessfully, it was determined (with imaging and scope) that he had a stricture on top of very aggressive disease. The GI's exact words for us after his colonoscopy were "it's back with a vengeance" - you can add that to the long list of things you never want to hear from your doctor. Hence surgery #3, and this time with a temp ileostomy. That is a whole other thread.
Anyway - this was last April and we have had nothing but problems ever since. He has been hospitalized 15 times since then to include bowel obstructions, dehydration, acute kidney injury, fever, infection... you name it. The surgeon is a pompous ass that has zero ability to think through his "complicated" case. How many of you have been told you're "complicated"... .to us that just means he's too much work and doesn't respond to the traditional therapies and therefore they won't offer any answers much less encourage you in the direction of finding someone that could. Oh, and if you have half a brain regarding the disease, I swear they will go out of their way to not listen to you for fear that you may actually know something they don't. (sorry for the rants - this is almost therapeutic!
).....After his reversal (that should have never been done as soon as it was and as sick as he still was) he almost immediately had severe nausea, vomiting and bloating and was unable to eat. Doc just chalked it up to Crohn's, even though he has never had symptoms like these with his disease before. He was unable to eat nearly anything and went from 240 to 160.. we got sick of being treated like an annoyance when trying to figure out why my husband is no better since surgery and in fact a lot worse. So we went to Mayo. They immediately found that he had a chronic leaking anastomosis and abscesses. He just finally underwent another surgery to resect the failed anastomosis, had to take some additional bowel too unfortunately and then another dreaded ileostomy. He ended up staying at the University of Michigan for 20 days due to complications after this recent surgery. He is finally home and we are trying to move on with life but he is still nauseous. We are so frustrated with this. I guess we really hoped that the N and V was related to the leak and it would magically improve after we put him through yet another horrible surgery. So when it didn't (mind you it's still fresh- just over 3 weeks post op), we are pretty disheartened. Here are a couple of things I'm wondering: 1) has anyone experienced trauma to their vagus nerve following a resection, and could that be a potential? 2) If this is gastroparesis, aside from a motility drug like reglan, that has it's own side effects... is there anything that can be done to help with motility? I believe Mayo has a motility clinic... has anyone been helped there? 3) is there ANYTHING that anyone can add that might help with this nausea. Let me say, we have tried it ALL.
Sorry for the ridiculously long post... so much for my short story.... lol.
Thanks a ton! We need a CURE!