I had my jpouch surgery in 2010 and had UC. Few years after got sick and was diagnosed with Crohn's . My Dr. Says I am one of the 25% of miss diagnosed people. Has anyone else had this issue? It's just discouraging.
I originally was diagnosed with UC and later with Crohns. It is just a label for me. Thankfully, I was able to find a GI who has worked with me to help me work out a med routine that has allowed me to live a fairly "normal" life. (Whatever that really is besides a setting on my dryer
Anyway, my pouch is now 14 years old. It has been in the last 4 years that I've gotten the medicine combination that works for me. The label didn't change things, the medicine my new GI was able to provide has given me a new outlook on life. My advise is not to worry so much about your diagnosis being changed to crohns, but how you can get the help you need to live your "normal".
I've been round and round on this issue with many members of this site. Many on this site are health care providers so I can see how they would be a little sensitive with this issue, but I feel that being misdiagnosed and then being told that I need to have a major operation that will absolutely change my quality of life forever and then told, oops, I made a mistake is grounds for my being angry about the misdiagnosis.
Like Still Standing, I am of the opinion that the diagnosis is just a label for bowel inflammation. Surgery isn't designed to cure autoimmune disease, which often manifests after surgery with new inflammation in new areas. So it's tricky to either say or prove that a misdiagnosis occurred. I was originally diagnosed with UC, had surgery, was 15 years later diagnosed with Crohn's in the ileum. The Crohn's that I have is much more controllable and less symptomatic than the UC pre-surgery, so if this was a "misdiagnosis" (which I don't think it was- just new inflammation in a new area due to autoimmune disorder), surgery was nevertheless a net positive for me.
For these reasons it's hard to draw any generally applicable conclusions about a change in diagnosis. In the final analysis it doesn't matter in a large number of cases, because the treatments are basically the same regardless of what you choose to call bowel inflammation caused by autoimmune disorder.
What is more important is where the inflammation actually is, whether it's in a new area and whether it's being adequately controlled. If it's not being controlled, doesn't matter what you call it. It's "uncontrolled inflammation."
"In the final analysis it doesn't matter in a large number of cases, because the treatments are basically the same regardless of what you choose to call bowel inflammation caused by autoimmune disorder."
Total colectomy is not prescribed for treatment of Crohn's because the disease will eventually manifest somewhere else in the digestive tract. With ulcerative colitis, the only cure is colectomy and that is why the Doctor's diagnosis is critical. If my Dr. had told me he wasn't positive it was UC, I would not have had the procedure and I would still have a colon (and the doc would have made a few thousand less that year).
As I recall, your theory is that you would have needed at least a resection anyway because your colon was dissolving. If that's true you are in a distinct minority.
Colectomy doesn't cure you of the auto immune disorder that causes UC so it's a bit misleading to say the surgery is a cure. And this is something that should be communicated to the patient. Autoimmune disorder manifests as both UC and Crohn's in the bowels. And the course I have had of it manifesting as inflammation in different places isn't unusual. Once you remove the labels you are just talking about inflammation appearing in different places at different times- which isn't necessarily predictable to anyone.
I would have had a colectomy no matter what because at the time my entire colon was inflamed and none of my ileum had any inflammation at that time. The entire colon was severely inflamed and dissolving on removal and resection wasn't in the cards. That was after 20 years of UC that was not well treated. I just didn't respond well to the available treatments at the time. Surgery was inevitable, and when it ended up happening was semi-emergent.
15 years later Crohn's appeared in my ileum. What caused it was the same autoimmune disorder that caused the UC. Being strictured at the J pouch inlet doesn't help, but I am told my pattern is scattered ulcerations in the neoterminal ileum, which doesn't correspond neatly with backsplash stool- hence my Crohn's Diagnosis, because of the location and pattern of the inflammation.
I don't see how the latter diagnosis changes the fact that I was correctly diagnosed with UC 15 years earlier, and I am suggesting that this happens in a lot of other cases besides my own. Had the same biological drugs existed when I had my colectomy and they worked as well on the UC as they do on my Crohn's now, I wouldn't have needed a colectomy. But they didn't exist at the time and how they would have worked on inflammation of colonic tissue - which is different than the tissue of the ileum- is just speculation.