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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 3×3’s and 4×4 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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Bobbing56
    2 months ago

    I have had PG below my ileostomy stoma, under the pouch faceplate for over five years the only thing that’s worked is cyclosporine which makes me incredibly fatigued. My PG dermatologist wants to switch to Stelara but I have Medicare and don’t qualify for the Stelara $5 coupon program and make to much money for other programs, @#$%^!

  • thedancingcrohnie moderator
    2 months ago

    Goodness, I am so sorry about that. The politics of insurance can be so frustrating. Perhaps talk with your doctor and see if there is another way to be approved for Stelara? Or even call the company and ask if they offer any special programs. I know for Remicade they have a program under Johnson & Johnson. I’m almost positive Stelara has the same. Give them a call.

    Always dancing,
    Elizabeth (team member)

  • thedancingcrohnie moderator
    2 months ago

    Thank you so much for sharing your story with the community.

    I’d like to first thank you for your service. Because of you, I am able to enjoy my freedom. Your sacrifice is greatly appreciated.

    Secondly, I am so sorry you have had to endure so much with this illness. I know first hand how draining and exhausting it is to fight symptoms every single day. Your story is truly sobering. I can’t believe you had so many PE’s. Just surviving that alone is miraculous.

    My deepest condolences goes out to you for your tremendous loss in your family. Stress of that nature never helps with illness and I can only imagine how difficult that must be and continues to be.

    Please know that you aren’t alone. And that you have a community here that understands the struggle of IBD. We can relate and we will always be here to offer you support.

    I have heard that eating marshmallows help with overactive stomas. Perhaps this would be something to try? Pyoderma Gangrenosum is so tough. Here is an article that you may find helpful: https://inflammatoryboweldisease.net/living/weird-symptoms-pyoderma-gangrenosum/

    I am so happy that you have a supportive wife.
    Cling to her. Support makes a worlds difference.

    Keep in touch. You have a community here that cares.

    Always dancing,
    Elizabeth (team member)

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