Help. sick and tired of Chrohn's

FINDINGS: Normal CT appearance of the liver parenchyma. No biliary dilation. The pancreas is normal. The adrenal glands and spleen are normal.


Small left-sided renal cysts. No evidence of hydronephrosis or ureteral calculus.


Postoperative changes from colectomy with ileal pouch anal anastomosis. There is hyperenhancement, wall thickening, and prominence of the para vasa recta involving approximately the 15 cm of distal most small bowel/pouch. Findings are consistent with active inflammatory changes of Crohn's disease. These changes involve a similar distribution to the 06/08/2015 exam, but the degree of inflammation is likely slightly increased since that time. This could be partially confounded by differences in contrast bolus timing, however the degree of inflammation is not improved.


Chronic dilation of the distal small bowel proximal to the pouch over multiple prior exams. No evidence of fistula or abscess. Mildly prominent mesenteric lymph nodes that should be reactive related to active inflammation. Postoperative changes of the right hip with dysmorphic appearance of the femoral head and acetabulum.


IMPRESSION:

1. Active inflammation involving approximately the distal most 15 cm of the small bowel and pouch. Overall inflammatory changes appear slightly progressed since 06/08/2015, given the differences in technique. No evidence of abscess or fistula.

2. Chronic dilation of the distal small bowel, proximal to the ileal pouch.








the above is some information from my doctor from my last surgery. I have some memory problems due to all the drugs I have been on. Sick and tired of being sick and tired.


I had surgery in April, to remove part of my small intestine. This is my second surgery for the small intestine removal. I do not have a colon, removed that in 06.
I have been seeing Dr. Renton for my chrohns. The tests that I have had told us that the Entyvio is not working. I have been on Entyvio for 6 months. Had a cat scan to compare. actually it is getting worse. I have been on every drug out there for my chrohn's and nothing works. He wants me to have a ileostomy. Dr. Renton has suggested that I return to Rochester Minnesota, Mayo Clinic.
What I am most concerned about is this. If I have the ileostomy will it solve the issues of abdominal pain, the over distention of my small bowel that causes much pain, and will it solve the eventual thickening of the walls of the small bowel that seems to always happen after my revisions? I just want to be in remission and Pain free. I have been trying to watch my diet, I just started drinking boost to gain weight. I have had this d/d for 13yrs. I am not a young pup anymore.
I apologize if this hard to read and understand.

Jeez. No offense, but that's the kind of story which sends a chill through my heart. On the other hand, an ileostomy could be the only thing to put you into remission. I had an ileostomy for 2 and a half years before having takedown surgery - unlike you, I didn't have a j-pouch created, my ileum was connected to my rectum (or, technically, what was left of my sigmoid colon).

My small bowel was in remission the whole time I had an ileostomy. I suspect it wouldn't have lasted forever - partly because of the nature of Crohn's to come back and partly because of slightly iffy pre-op blood test results. However, I could have had a few more years before obvious symptoms emerged. As it was, my Crohn's came back almost straight after surgery and I'm seriously considering going back to a permanent ileostomy.

Your immediate Crohn's issues should be solved if you have an ileostomy: the abdominal pain, the dilation (which is probably caused by the bowel trying to force the bowel contents through a narrowed part), etc. I just wish I could promise you it would last, but I don't know. On the other hand, it is your best chance and I don't think you have many acceptable alternatives left at this rate.

Oh yeah, if it's relevant, I had terminal ileum disease for 13 years before surgery, so when I had the ileostomy done, it wasn't like I had never had small bowel disease because I had. And I'm sure that's dreadful grammar, but I'm too sleep deprived to try to word it any better.

Really hope you can catch a break :-/

They are the docs and should know what the heck to do.

They don't. If it's not an emergency, then they tend to leave it up to the patient to decide what to do. To be fair, they can't read the future any better than you can. They also probably don't have a great reservoir of experience to draw from, since Crohn's patients with ileostomies aren't thick on the ground. I would suggest trying the Mayo clinic, like your original doc suggested.

But I must admit, it's almost impossible to see where you can go from here, short of experimental therapies like MAP antibiotics or whatever. Not only that, but finding a GI prepared to try experimental therapies is harder than getting blood out of a stone. Still, I would ask the Mayo doc about treatments beyond the biologics, and see what he/she says.

I think, though, you'd almost certainly be better off with an ileostomy. There's a reason why j-pouches aren't usually given to Crohn's patients and you're living proof of why, unfortunately.

On my way to Mayo in Minnesota 12/10/15, is the day they cut me. I am doing the ileostomy. Been thinking about it for years. Time is right, right now. Been having lots of issues, pain,pain,pain. My G.I. doc and mayo doc do talk about my condition. Besides the pain when ever I lay on my side the pain gets worse. So for the last 6 months I just sleep on my back. Now that alone hurts. My doctor from mayo says I will be in the hospital for 3-5 days. But for me it usually longer then they say.
I have been doing some research as to the appliances I am going to need. Looks like a trial and error. I had the ileostomy back in 05 for 3 months, so I have some kind of knowledge. I remember lots of pros and a few cons. Just have to have an open mind and think positive. That is me most of the time. But, them days when I think negative (not good). Thank god for some meds for depression and anxiety. Another drug to get hooked on. rather be hooked on M/M.

I have tried all drugs out there except Medical Marijuana. I would try it if it was legal here in North Dakota. If I have a fat check book, I would move there and give it a try. BUTT. Just wish this country would get their poop in a scoop and make Medical Marijuana Or I call it Medical Canabis. Or Medicine. Thanks for listening and thanks for the responses. Bill w.