Posted 12/12/2017 11:54 PM (GMT 0)
I quit smoking in 2006 after five years. In 2012, after a period of extreme stress, I had what I now recognize to be the first symptoms of Ulcerative Colitis. I was thirty years old. I started passing small amount of blood and mucus. I had constipation sometimes. I experienced no pain. I figured I had internal hemorrhoids. Anytime I would experience considerable stress, I would pass blood the following day. I did not have insurance.
After about six months of dealing with the minor symptoms listed above, they went away completely after I went on a long distance hike. I hiked about 1000 miles over a few month. I got a lot of sun, which gave me some much needed vitamin D. I was eating an incredible amount of whatever I pleased, probably 5000-7000 calories a day. I did not notice any symptoms.
Fast forward to December, 2016. I was dealing with more stress than anytime in my life. My symptoms came back with a vengeance. I was going about 3-6 times per day. Often defecating nothing but blood and mucus. When I would have a normal BM it was mostly formed, but stained with blood and mucus. I had increased urgency in the morning. I had no pain, but I could feel some swelling when I bent over.
I did a bunch of research and came to conclusion I had UC. I first tried to start smoking again. This seemed to help immediately but was intolerable, and I quit after several days. I then tried ecigs, and they did not have the same effect. I tried the patch for a week or so and it did not seem much effect. So, I gave up on nicotine therapy.
Subsequently, I learned two of my uncles have celiac. I tried going gluten free for a few weeks with no improvement. I read about the SCD diet. I really did not want to change my diet beyond gluten free, but UC drugs scare the crap out of me, so I figured why not. I started the SCD diet. Within a few days I noticed some improvement, and within a few weeks I felt quite a bit better. However, I was losing weight. It was just too hard to eat enough chicken and carrots to get enough calories. I started "cheating", and doing stuff like eating larabars. I seemed to tolerate the larabars fine. I upped my butter intake. I found I could not tolerate honey at all, and too much juice was no good as well. I made the SCD yogurt with goat milk. That seemed to make a huge difference, but I could not tolerate it well the first couple of weeks.
After two months on the diet I was having no symptoms. I could eat everything legal on the diet, and I gained all my weight back. Which, I don't know how healthy that is. I was going once or twice per day, and they were fully formed. No urgency. No blood. Normal amount of mucus attached to BM's. I also should note I had eliminated most stress. I simply quit dealing with anything stressful, which is not the most practical approach to life.
After being faithful to the diet for two months, and being in what I would describe as total remission, I went on a hiking trip, and conveniently forgot I had undiagnosed UC, possibly Celiac as well. I started drinking beer again, and I tried tackling all the stressful things I had neglected. Within a few weeks I was having raging symptoms again. After a few months of this I was going twenty times a day, in extreme pain, losing weight rapidly, and worst of all waking up every hour to go.
I finally tried to get care, but I picked the wrong provider. I lingered for weeks in extreme pain getting worse because I chose such a horrible provider who would not give me the care I needed. I ended up going to the emergency room of another hospital five days ago, and finally got the care I needed. I have severe UC. I'm currently on 50mg prednisone, 1mg ativan, and 5 mg oxycodone. Tomorrow I start sulfasalazine.
And I'm darn sure going to go back on the SCD diet. I'm pretty sure if I would have avoided stress and stayed true to the SCD diet, as much as I hate it, I would not have flared up again over the summer.
Anyway, I'm terrified of prednisone, but it seems to be helping. I'm hoping just being on the SCD diet and sulfasalazine will keep me in remission; after I taper the prednisone, of course. This first year gastroenterologist I was dealing with at the hospital would not shut up about immunologics, and biologics. I told him to kiss my azz. I'll give the first and second tier a try before I go shutting down my immune system entirely. Thank you very much.
Anyway, there is my story.