I was diagnosed in 1994, at the age of 20. I am now 40, and have been fighting UC for nearly half of my life. The first ten years were the same, flare Prednisone, flare, Prednisone. I had no idea of the dangers of steroids. The internet was not what it is today and I didn’t fully understand what was happening to my body. Approximately five years ago, I was in a three year period of remission and I completed 5 half marathons, and 15 5ks and 10ks. For me, a three year period of remission was extremely rare for my UC. Normal remission periods were less than six months. I feel like it was the calm before the storm, because ever since the remission ended, I’ve been back and forth battling my colon. Today, I am more informed of my disease, treatments and the strong possibility of losing my fight with UC, i.e. having a colectomy as I’m nearing the end of the medical road.
Some more about me:
I’m from Fort Worth, TX. I love to be outdoors. Hobbies include golf, fly-fishing, running, yoga with my wife, and playing with my children and dogs. My wife is pregnant with my first, due in April 2014.
Current symptoms include blood, mucus, urgency, cramping, abdominal pain, and 7-10 daily trips to the bathroom.
Oxygen and UC
2014 marks the 20th year of my battle with UC. I was diagnosed in 1994 at the age of 20 and now I’m 40, and still have my colon. although lately I’ve been wishing it was in a jar somewhere being studied to help find a cure for our disease.
I live in Fort Worth, TX and for the last ten years, I have been taking summer and winter trips to the mountains, mostly in Jackson Hole, WY. The elevation in Texas is less than 1000 feet above sea level. The elevation in Jackson Hole is 6500 feet above sea level. I have visited the mountains approximately 12-15 times, and every time my UC flares without fail. Even if I have been in remission for six months, the gurgling, blood, mucus, etc. arrive after two or three days in the mountains and it becomes a full-on flare up.
I mentioned this to my GI and he said it was due to lack of oxygen to the cells. Of course this makes sense that there is less oxygen getting to the cells, but what does this have to do with causing a flare? What does oxygen have to do with UC? During flares, should we walk around with oxygen tanks to increase the amount of oxygen getting to our cells in hopes that this could put us in remission? I’m being sarcastic, but I wonder if a boost in oxygen could help put our UC into remission.
Has anyone noticed a flare caused by a change in higher elevation?
Thanks Adam and best of luck to everyone on this amazing site.
Current meds are Asacol, Imuran, Folic Acid, Hydrocrtizone enimas. Current supplements are probiotics, Vit C, Vit D, Calcium. Trying to eat gluten free. Failed meds include all biologics. Humira did not work. Remicade worked for three months then gave me psoriasis. Simponi made my psoriasis explode all over my feet, legs, and abdomen, and no help with my UC.
How have you successfully managed your relationship with your wife while dealing with UC. I am recently married (August 2013), and am in my first flare. Any tips on humor, or ways that have helped you maintain a healthy relationship while dealing with UC? Thanks – John”
Thank you so very much for sharing your story and for raising a great question with regards to 0². Oxygen is a topic which has rarely been discussed on the site. Let me try to tackle your question with regards to relationships/my wife and dealing with it first.
I’m coming up on my 6 year anniversary in just under two weeks(six friggin years already…wow is what I’m thinking). Time does flies no lie.
In my opinion…relationships are never easy and stress free all the time. Ups and downs, happy/sads, good time/bad times you name it right. I think everyone can agree if you really like/care for someone. And, it’s not always easy to mix in UC into the whole deal either. But, most certainly it can be done.
Here’s what I have done to help blend my UC with our relationship:
- Stay open and honest about how I’m feeling when symptoms arise (No reason to hide symptoms from my wife. I did that for far too long before we were married, and it got me nowhere in those undiagnosed days.) When I had a flare up two years ago, I was concerned, and she was concerned, and she knew nearly everything that was happening. BUT, at the same time, I let her know(maybe the second after) once my poop was back to normal so she could take part in the recovery/rebound too. I guess I just don’t see any benefits in hiding things.
- Life partners (like moms) tend to be more interested than us UC’ers think in our conditions. My guess is she is scared about the person she loves. My wife was the same way at first. So, again, kinda like before, I’d suggest to make sure she understands what the disease is all about. You’ve got 20 years of experience with it. It may as well be a great idea to ask her “how would you treat this thing if you had it?” Heck, she might have some new ideas for you, or it might simply get her a bit more interested. Wives are pretty smart, and wouldn’t be the first time that one opened our eyes to new thinking/ideas etc…(especially yoga wives:) I actually got kicked out of the living room this very moment I’m adding your story by a “yoga wife”(if i took a picture of her right now and posted it she’d probably kill me, so not going to do that)
- One thing that I that has helped me and Michaela out the most is keeping a positive spirit. EVEN when the bloods a flying, and yes, its super hard to do but its possible. It’s much easier to do since I’ve had good control of the UC in the past 4 years. But, even if that wasn’t the case, keeping the mental vibe of, “I’m not going to be like this forever, these symptoms are only temporary, and if what I’m trying now doesn’t work, there are other things I can try that might help better…” That’s what I do in my brain, and she knows it and likes it. She knows darn well that there’s all sorts of options that we could try if my diet thing stops working someday (which I’m not anticipating). Positive thinking is so much more powerful then going to the dark side.
- A simple thing I wrote about in my ebooks is this, I bring my wife to my doctor visits. It’s been a year and a half since I’ve seen one, but she was right there to pick me up at my colonoscopy in Sept 2012. And I used to bring he along (she wanted to go) to the visits when I was real sick in 2008 and 2009. She was part of the UC team. Maybe your wife might be interested in that?
- OK, she’s done with yoga now, and I just asked her about this, and she said… she was actually interested in doing research and going over the internet. She was doing this alot back in the old days after my diagnosis. Again, maybe if you asked her about that, if that might be something interesting for her…maybe it would be. I know again you’ve got lots of experience with UC, and she knows that too, but heck, it might get her a bit more interested in the whole deal.
I’m hoping some of the readers here can add some ideas to this posting! chime in UC folks please, i’ve rambled too much
Back to oxygen,
I’m interested in this. I do recall reading a blip in a study about people with an autoimmune disease going into the oxygen chambers on a regimented schedule, however I don’t recall the outcomes. But, on a personal note, I’ve been living at about 2 feet (sometimes below) sea level the past 6 months and have definitely felt 100% along with keeping a hard check on my diet. (And drinking lots of coconut water from the cocos which is something I will be posting about soon.)
I wish you the best John, and as a closing note, don’t for a second feel that surgery is a sign of you giving up and throwing in the towel. There’s too many people that have UC who would say it was the best decision of their life. I know that may be an option for me someday, and I’ve gotten much more comfortable with it as the years and stories have rolled on.
Take care and best to you,