Facing down partial or subtotal colectomy...

Hello, all. I am new to the forums here. Seems like a good place to share and learn. Anyway, I am a 34 y/o male and I was originally diagnosed with Crohn's (or Crohn's Colitis) about 20 years ago when I was a freshman in high school.

My initial flare up and the subsequent year or so of diagnosis and trial of different treatments ultimately led to my GI putting me on Asacol. I stayed on that for a while and eventually my Crohn's went esentially in full remission. The latter part of high school and into college proved to go very well such that I had stopped taking meds all together and basically had no symptoms of Crohn's and lived a "normal" life. In 2001/02 I had a colonoscopy done and the GI basically said he didn't see any signs of inflammation, stopping short of calling me "cured."

All was going well for the next several years, when I had an acute flare up and the colonoscopy showed active inflammation again. So, as before the GI put me back on Asacol and within a few months, all seemed back to normal. I went back to living my life without much thought to the Crohns, and for the last six years or so since then, I have been living basically symptom-free and worry-free.

That is until this fall....

Toward the end of the summer, I noticed I started having some problems with the joints in my hands and feet. They were getting stiff and swollen and hurting. When I went to my GP, he suspected I might have rheumatoid arthritis, and decided to order a blood work-up to see what was going on.

The blood tests showed a positive result for the RA factor and subsequently I went to see a rheumatologist. The rheumatologist wanted to put me on methotrexate for the RA but before starting that, he wanted me to get my liver checked out because the levels were a little high on the tests.

So, I went back to my GI doc for the first time in six years to see what he thought. He asked about my Crohns and I told him I had been fine and everything seemed ok. So, he ordered an MRCP (MRI) of my liver to see what was going on there. When the results came back, he discovered that it looked like I might have Primary Sclerosing Cholangitis (PSC--narrowing of the bile ducts) and then he referred me to another specialist GI for an ERCP.

When I saw the second GI, he was concerned as well. Beyond that, he was also concerned because, along with the possible PSC and new joint problems, I had not had a colonoscopy for six years and he felt it would be a good idea to check out my colon and see if there was anything going in there, even though I hadn't been having any symptoms.

I agreed. So, they performed both the ERCP and the colonoscopy at the same time. No big deal I thought...until while in the recovery room (and still coming out of the anesthesia) I was floored when the doc said they found several "masses" in my colon (in the cecum/ascending area) and that he was very concerned and thought I would probably be requiring surgery! It was quite a shock, simply because I hadn't been having ANY symptoms of Crohn's or anything else.

So far, the biopsies came back negative for cancer (thank God). Unfortunately, however, they are too big to remove via colonoscopy and due to some "active" Crohn's in other other areas, they believe surgery to be the only recourse. Now, I met with the surgeon this week, and in his opinion, I will most likely need at least right-side partial colectomy, however he is leaning toward a subtotal colectomy. He says the rectum is fine but due to the Crohn's in the remaining portion, and along with the PSC, his primary concerns and reasoning for removing (virtually) the entire colon are the increased risk of cancer in the remaining portion due to the Crohn's and PSC as well as the potential risks of the resectioning not going as well due to Crohn's in the area of the resectioning.

I am still on the fence and don't know what to do.

Right now, I'm gearing up for an abdominal MRI to check the small intestines and the rest of my gut to see how it looks, but the surgeo did say that if we do the partial-colectomy only, I will need to go back in for a more involved colonoscopy in which they use dye and/or biopsy areas along my entire colon to get a real "lay of the land." (Apparently, they weren't prepared to do that the first time because no one really suspected any issues I the colon.)

What concerns me about doing the subtotal colectomy right now are first, I'm only 34 and I (hopefully) have a lot of live left and want to make sure if there's any way to save some of the colon and my quality of life, I think it is worth looking into. Second, while I understand there is an increased risk of cancer, however presumably, I'd be having much more regular colonoscopies afterward, so I feel that if cancer began to rear its ugly head, it should (theoretically) be detected earlier enough to be handled in time (no?). Third, even if the remaining portion of my colon turns south and I have to have a subtotal colectomy 5-10 years down the road, at least I would have a few more years with a more normal life (right?). But who knows...maybe treatment will be even better then?!

So, I know this is a long post, but what do people think? Is it worth the potential risks to keep part of my colon in order to maintain a more normal life? Or should I just bite the bullet and do the subtotal colectomy now and learn to live with my new bowel? How many people on here with Crohn's had a partial colectomy only to have more problems later and have to go back for the total? How many people only did the partial and never had any more issues? What am I really looking at as far as the frequency and urgency of BMs with a total as compared to the partial?

The problem is I work outside and in all different locations and I am honestly very worried not only how much work I will miss initially after the surgery, but also how often I will have to use the bathroom afterwards (and for the rest of my life!).

Right now...my gut instinct is telling me to at least do that other colonoscopy to see what the entire colon looks like and then see if the partial is a viable option and try to make that work. I don't know. It's just so hard because I thought I was pretty healthy and all the Crohns issues were behind me...

What do people think? Thanks...

First, welcome to the forum!

Are they planning to remove the 'active' areas or treat them with medication? (Inflammation vs scar tissue/strictures)

Have they mentioned a j-pouch? They can be a option for some if the patient meets all the requirements(no small bowel involvement for one).

Sorry I connot answer to your specific questions but you could also ask you question on the Ostomy Forum. Many posters there have had subtotal colectomy and may have some insight.

Remember, second opinions are an option if you are unsure.

I want to add that your doctors know the increased risk of cancer in crohn colitis related to colangitis; I think you should be very very happy the exams was negative, as masses in colon are not the best to find in that situation (14 years old crohns plus colangitis);
please ask your doctor if they found any precancerous (high grade dysplasia) condition in your colon; if so, you should definitely think about colectomy. You're right you could be checked every year for cancer, but, the important is to know you have not dysplasia at the moment.

You are right, your crohn wake up in an unpredictable flavour, but, this make no particular difference, there are people completely healthy who are diagnosed for colon cancer and have part of their colon removed. good luck.