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“If you have much, give of your wealth; If you have little, give of your heart.” ~Arab Proverb
~Nadia
When my doctor diagnosed me with autoimmune-associated pouchitis, a chronic condition that has not gone away, she prescribed me immunosuppressants. This wasn’t entirely surprising, as she had hinted before that this would be the likely treatment.
The question I had, and my family and friends had, was: how long would I have to remain on this medicine?
The answer: indefinitely. That’s the word my doctor used, and the more I’ve thought about it, the more I prefer that word. Indefinitely sounds less threatening than “forever,” which is usually the way we interpret our treatment plans in our heads. But the word choice is more than just semantic preference: indefinite is really the best word to describe treatment for IBD.
Keep fighting,
~Dennis
Lauryn, a brave young 14-year-old, shares her story of ulcerative colitis and the ups and downs she’s experienced the past couple years. She’s very inspiring and we could all learn something from her attitude.
Keep fighting, Lauryn!
~Dennis
This last month I’ve been talking about my recent diagnosis of autoimmune-associated pouchitis (see previous entries for more details). I know I’ve been talking about this a lot, but people have many questions and concerns about this.
One question I’ve been asked several times now is: would I consider ostomy surgery again instead of going back on medicine? I find this a fascinating question as usually surgery, especially ostomy surgery, is something people try everything to avoid.
Keep fighting,
~Dennis
Ostomystory posted this video about her dynamic proctography experience. This is a test done for people with J-pouches right before takedown surgery to see if the J-pouch is healed and ready to be used.
Her experience is very similar to mine (my video posted second), but different in a few ways. Her experience doesn’t sound nearly as traumatic as mine was, which is fortunate for her. She actually said this was one of her “favorite” tests of all the procedures she’s undergone with IBD so far: I found it one of the worst procedures.
One cool thing about her procedure was she got to see the dye being injected into her pouch as it was happening. I saw no such thing, so I’m a little jealous! I post her video and mine side by side like this so that you can see how a very similar procedure can be interpreted and experienced in vastly different ways depending on the person. That’s why it’s always good to get multiple patient perspectives before making any new treatment decisions.
Keep fighting,
~Dennis
Since being diagnosed with autoimmune-associated pouchitis (see last two blog entries for more info), many people have been concerned, perhaps more concerned than I am. Some have asked me about the discrepancy between what I was told before surgery—that surgery would cure my ulcerative colitis and I no longer needed medicine—and what I am experiencing now—a return to IBD medicine.
Some have wondered, perhaps rightfully so, how I feel about this. Do I feel like my surgeon misled me? Do I feel betrayed? Am I angry that I was told one thing and now live another?
While I would rather not take medicine, truthfully I am not upset at all. Surgery always includes risks, and just because something didn’t work out the way we planned doesn’t mean it was a bad decision
Keep fighting,
~Dennis
A short video about secondary conditions associated with chronic pouchitis. This video is just for your information about what can happen, not what will happen. For those of you facing surgery, this video is not meant to scare you.
To read more research about these secondary causes of chronic pouchitis, check out this article by Drs. Udayakumar Navaneethan and Bo Shen in the American Journal of Gastroenterology.
Keep fighting,
~Dennis
Last week I wrote about my recent diagnosis of autoimmune-associated pouchitis. For those unfamiliar with this diagnosis, I suggest reading that blog first before this one. Basically, I’ve had chronic pouchitis (an infection of my J-pouch that causes symptoms similar to inflammatory bowel disease) for months, and am now treating it with IBD medicine.
People with Crohn’s disease often continue taking IBD meds after their colectomy: even if their disease was primarily in their colon, it can appear elsewhere in the digestive tract. IBD meds are necessary to keep the disease in remission.
However, people with ulcerative colitis often don’t need to take IBD meds after their colectomy. Ulcerative colitis only happens in the colon, and if the colon is removed, the disease is removed along with it. Thus, IBD meds are not necessary.
And yet, I was diagnosed with ulcerative colitis—not Crohn’s disease—and I am back on IBD meds, even though my colon is missing.
Several people have asked me how I feel about this. In this entry I hope to provide some perspective on coping with such an unexpected diagnosis.
Keep fighting,
~Dennis
Here’s a great video from Mayo Clinic discussing primary sclerosing cholangitis, a liver disease associated with ulcerative colitis (in rare cases). It’s an autoimmune disease for which there is currently no effective treatment outside of liver transplant.
When I was first diagnosed with UC, my liver enzymes were out of whack, so we actually tested for PSC and did an MRCP at Mayo Clinic: the doctor in this video was actually my doctor! Then after my surgeries my liver improved dramatically, so now we’re not so sure about PSC (which I’m grateful for). I was told this condition is slow developing: as he says in this video, usually people in their 40s and 50s are diagnosed.
I know very few of you will ever have to worry about PSC. But because it is associated with UC, it is still good to be informed.
Keep fighting,
~Dennis
Question: Have you, or anybody you know, been diagnosed with PSC? What are your experiences with this disease?
In this video I recount the four-month journey of getting diagnosed with chronic pouchitis. Mind you, it wasn’t four months of constant struggle: most of the time I felt pretty good because of antibiotics. Because symptoms kept returning whenever I got off antibiotics, we investigated the actual cause of my pouchitis.
Keep fighting,
~Dennis
