Vent...

Ok, we have had it with fistulas and appliances that just plain don't work!  Husband has two abdominal fistulas draining liquid poop all day.  We are so tired of the mess, not to mention the cost.  Not exactly what we were thinking about when we saved for a rainy day!  Didn't know the rain was going to be poop, poop everywhere.  We're advised, "here use this $30 can of medical adhesive, it will make anything stick".  Wrong!  "Here, try this $30 box of sticky doodads, it works well!  Not!  I am about ready to lose my freaking mind.

Sorry for the vent, but I warned ya!

Thanks for your response. The fistulas come from what is left of his small intestines and developed after his last resection in 2004. The surgeon says he really, really does not want to operate on DH again. He says he genuinely feels the outcome would leave him in worse shape than he is in now.

Thanks for the ((hugs)), I appreciate it!

Hi Rose, sorry about all the problems you guys have been dealing with - my advise is to see a gastro at a teaching hopsital - even if it's a drive. Enough is enough - am I right? When dealing with multiple complications of this disease you need someone that's well-versed in ALL of them - not a community GI or GP that doesn't see a lot of this stuff. The docs at teaching hospitals see the most complicated cases and hopefully will be able to get things on track quickly!

I appreciate your responses and suggestions. Today has been especially trying. We are looking at our fourth appliance change before bed tonight.

DH has hardly ever gotten more than 48 hours out of an appliance, but the last month, we are doing good to get half a day. He had his Humira injection today and we are hoping that will slow the output down. He is really getting depressed which isn't at all like him.

We have tried so many different components, gotten samples of lots of different appliances, have talked to three ostomy nurses and spoke with the clinician at Hollister. We have tried medical spray adhesives, different seals, etc., etc. It just seems as if nothing will adhere. And the more irritated the skins gets the more "weepy" it gets.

DH is 69 and while we have talked about going to Cleveland Clinic, I think all of you can understand his not wanting to go through the testing, poking and proding that goes on with a gastro work-up. He has had more than his share of that already. But if this continues, we may not have a choice. The surgeon who performed his last resection in 2004, said his intestines are a mess. Some areas are grossly enlarged and others are very, very narrowed. DH suffered a number of complications after the 2004 surgery including a pulmonary embolism.

He developed Chron's in the first year of our marriage. Tomorrow is our 45th anniversary.

Rose, I would think the poking and prodding of the GI workup would wait till they find a solution to the immediate problem he's suffering with. And if you take his medical records for the past 2-3 years with you they might not have to do as much of a workup as you think. I would go, you two have been throught the ringer with this stuff and you need some solutions. Let me also say that I've read posts on here that refer to tests I've never been subjected to at the U of Chicago as a crohns patient of 35 years so he may actually find the process less uncomfortable and more helpful than any doctors visit he's had in a long time. Please encourage him to go - at least then he'll know he's had the best possible treatment at one of the premiere IBD centers in the country. Good luck!