OstomyMan

Back in November, I had to get my first major “check up” since the surgery back in February to make sure I didn’t have any pre-cancerous stuff going on. I was scheduled to get a flexible sigmoidoscopy. One nice feature of getting a sigmoidoscopy after having a colectomy is that there is no prep. I ate lunch right before I came and it was just fine.

It was sort of funny when the nurse asked when the last time I had eaten was. He was rotely going through the questions and to double take when I said that I had just eaten lunch. But then he realized that the two ends of the intestine weren’t connected anymore and off we went with the rest of the questions.

Then I think that was about the last fun part of the procedure. Despite having no prep, having a large tube stuck up your butt and then having a bunch of air pumped in isn’t very much fun. Though they did move a monitor so that I could watch what they were seeing, which was neat.

It turns out that I have hardly any “normal” intestine left down there. There were only a couple of little bumps where there should have been a whole bunch of “villi”, the wrinkles that absorb everything. I guess those bumps are called “pseudopolyps”, and were actually the last few remaining portions that were relatively “normal”. But he needed to take biopsies, so most of those are gone now too 🙂

It was interesting to see everything. It was really the first time I had been able to watch while they did one of these (it was my third, not counting colonoscopies). But I think it reinforced my idea of not getting a pouch right now. Maybe sometime in the future, but right now things are still too inflamed and I don’t think it would go over well.

So what was the final determination after looking in there? I have colitis! Big surprise. And after waiting a month for the results of the biopsies (some breakdown in the line happened because they were actually done after a week), I called up and found out……that I have colitis. But that’s all I have so that’s good. No cancerous stuff to deal with and I don’t have to go back to the doctor again until May (and that’s just for a regular talking appointment, no scoping).

While I had colitis there were a couple of things that I did that really helped me along. And though they didn’t cure me, they sure made life much more normal and helped put me into or maintain remissions if I didn’t screw around too long before doing them. Some of them lost their effectiveness for me, but they might be able to help someone else with the disease so I thought I would give them in a series. Here is the first one:

When I first got sick, I got hooked up with a chiropractor that had helped cure an ex-girlfriend of colitis years earlier. I followed his advice and actually turned things around and was in remission for several months before eating a bunch of celery and ripping things up a bit. His advice was to eliminate sugars and wheat entirely. And to take some of Dr. Shulze’s Intestinal Formula #2 (mixed with some other similar product with flax seeds that I can’t remember the name of) and Superfood That meant basically vegetables, meats and tofu. I couldn’t quite make it on this as I got too hungry between meals, so we modified it so that I had some grits (made of corn) for breakfast and I allowed myself apple juice to drink, corn chips as snacks and some all natural rye bread for toast and sandwiches.

He also recommended a stool test and then taking some herbs to handle whatever was found (the test I had done was at the Great Smokies lab in North Carolina, but I’ve heard they were bought out by another company and so aren’t very good anymore). The test I had found Klebsiella (I don’t know which exact kind) and the recommended “natural”, i.e. no prescription needed, handling was to take Uva Ursi. So I ended up taking some hydrochloric acid (basically stomach acid) to assist in my digestion, the Uva Ursi to handle the bug and then stuck to the diet very strictly.

I did all of this while weaning of the prednisone and sulfasalazine that the doctor had put me on. By the time I was done with those medicines, I was totally fine. Back to one bowel movement a day, back to my previous weight of about 135 and back to feeling well.

And like I said, this worked very well. I was able to work really hard at graduating and handle any and all stress with no problems. I only lost it when I unthinkingly took a ton of raw celery to work and ate it as a snack all day long and ripped things up some and started a period of ups and downs.

When I had ulcerative colitis, I tried just about everything anyone could think of to fix it, and I’m sure this is true of many people with that or similar diseases. I tried acupuncture, special diets, IV therapy, herbal treatments and tons of different vitamins and minerals and other supplements.

But each one didn’t handle the situation, so I would move on to the next one. And now that I am free from colitis, I have a entire shelf stuffed to the gills with these tons of partially used bottles of various supplements. A couple of them are just general vitamins or minerals that will be useful for me just as a general supplement or for my wife when she gets pregnant the next time (or maybe the next couple of times depending on how much I actually have left!). But I’m not sure what I’m going to do with the rest.

I was just going to start on a program of taking some of them each day and working my way through them all to use them up. I figured it couldn’t hurt as long as I didn’t go way overboard on one or another without balancing them out, but I have run into another problem: I don’t want to take any more pills at the moment!! I tried to take them. I have them all neatly put out for the next week in my pill organizer, but that was for a week a couple months ago, and they are still there. I have been religiously taking these supplements over the years and now that I don’t “have to”, I really don’t want to.

So now I’m stuck with a ton of these bottles and no where for them to go. It’s hundreds of dollars worth of supplements (if only we could have seen into the future to know what to buy and what not to buy), so I don’t really want to just throw them away. I think for now I will hold onto them. I will probably get over my disinterest in taking any pills some day, and then I’ll start working my way through them again. But in the meantime I have my shrine of bottles sitting on my shelf to commemorate my history with colitis.

Welcome to OstomyMan.com. My name is Jared and I’m just getting started on this blog. I had Ulcerative Colitis for nearly a decade before I decided to have a colectomy and an ileostomy. While I had Ulcerative Colitis, I can honestly say that I tried just about everything to get and keep it under control. It worked off and on for quite a while, but it finally became too much once I had a baby (March 2007) and things really showed their true colors. I had pushed too long and too far without getting the situation handled, so now it was time to terminatedly handle it so that I could get back from the zombie like state of lethary and become a useful, productive member of society, a pleasant husband and an active dad.

When I was deciding whether or not to have the colectomy and the ileostomy, I found that there wasn’t a whole lot of information available about the day-to-day effects of having that surgery. The nurse gave me a book to read (Alive and Kicking by Rolf Benirschke), which did give me some idea and I really appreciated reading it. And after I had my surgery, I joined a couple of Yahoo groups on the topic and that has been very helpful too. But I didn’t find these things until the very end of my Ulcerative Colitis and after my surgery.

So I thought I would try to help fill the void for anyone that might be going through Ulcerative Colitis or facing a potential ostomy (whether ileostomy or colostomy). I figured I would let people know what I had tried, what I had figured out, what’s going on and how things continue to go in the future. It’s just going to be my experiences (and anyone else I have post), but I think it might be useful to someone facing these unpleasant situations and looking for real, down-to-Earth specifics. Hopefully it will help shed some more light on these areas.

P.S. I’m just getting this blog up and running, so there will be some structural changes or the next little while as I get it set up how I would like it.