40+ Years of IBD, 2 years of Pyoderma Gangrenosum

When I got out of the Navy I was in good health, but found out a few years later that I had Ulcerative Colitis (UC). At first I don't remember much about any treatment (too long ago) or any thing except the diarrhea and bloody stools. That was in the late 70's or 80's and thru the 90's. Then, in 2000, it really flared up again bad and I had to start carrying around a portable potty to go in while I was working or driving plus an extra set of clothes or 2, to change when I didn't get to the pot in time.

The VA never sent me to the same Dr. twice, so it was hard to get a real diet or meds to get some control. I live in a remote area and it is 35 to 45 mile to the nearest doctor or hospital and VA clinic. I had regular colonoscopies and blood transfusions, which led to blood clots and on July 4,2005??... I got a massive blood clot in my lungs and it happened many times and it got to be a toss up between blood thinner and internal bleeding or blood clots. I was in a very bad situation.

In the next few years, I had about 30 PE's (blood clots in my lungs) and any one of them could have been the end. In July 2008, I had a colonoscopy and a week later, a blood transfusion at the same hospital and came out with a staph infection in my blood but didn't know until I was given Humira and that caused a massive heart attack and 11 days in Cardiac ICU in Anchorage. IBD has affected a lot more than just my gut. Then fighting the IBD and blood clots and staph for the next several years. After many surgeries and massive blood loss in Jan 2011 (loss of 11 units in 3 1/2 hours), I found out what it was like to go from a semi healthy middle age man to a tired old man over night. I lost 40 lbs. and was soo weak I couldn't make it from bed to toilet and had to have home health come help me because I was alone and the VA didn't think I was sick enough to be in hospital.

In Oct. 2011 I had to have my artificial hip removed because of the staph and had no hip for a year to clear out the infection. In Oct 12, I was clear and got a new artificial hip and antibiotics for life. While I was in The Heart Center ICU, one of my brothers died and 2 months later, another brother died, and in 2013 a sister died, and my mom, just to get a little more stress. LOL (#6 of 12 children) Finally in Jan. of 2015, I had my colon removed by a very incompetent Dr. and he had to go back in and repair holes he left the first time a month later. All the time I was fighting an over active stoma and no bag would stay on more than an hour and some times it took several hours to get a break so we could put on a bag and I was so sore all around the stoma, down to my groin and upper leg, that I was bleeding and unable to get dry enough to get a bag to stick. The VA and local hospitals and wound care nurses tried every thing to get it under control but no real IBD or stoma nurses here. In Mar. 2017 I scraped my legs on a ladder at my work (self employed), doing what I could when I could. The left leg healed but the right leg grew and got worse and the VA Dr. had no idea how or what he was treating for a year and half, until one of the wound care nurses who had seen it before in Florida sent the word up the chain and I found out I had Pyoderma Gangrenosum on that leg. That was about 6 months ago and we have tried a lot of different treatments and dressings and on steroids and it might be getting better now with Tacrolimus ointment and covered with Dermacea 3x3's and 4x4 gauze and wrapped so it can breath. Only time will tell.

I am still fighting the over active stoma. I have seen my stoma squirt stool out 3 to 4 ft. so I have had to wash walls, floors, rugs, close and every thing else that gets in the way. Now the best part, I got married in July 17 and my wonderful wife is so understanding and helpful she is my most bestest Artic Blond

Please for give my poor spelling, and reading this long story.
Russ