Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Oxygen and UC

John after 20 years of colitis

recent picture of John

Introduction:

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.

Symptoms:

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.

Adam Scheuer (founder of iHaveUC) an Michaela heading back to US April 1, 2014)

Adam Scheuer (founder of iHaveUC) an Michaela heading back to US April 1, 2014)

Ask Adam

“Hi Adam!

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”

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,

Adam




5 Responses to Oxygen and UC

  1. Darlene April 7, 2014 at 9:54 am #

    John,

    Just a thought here — maybe the change in water affects your system. I’m from Waco, TX and many years ago I would take my very young children with me to visit my mom in CO. And they went through an “adjustment” for a couple of days. I don’t now if water would affect UC at all but your story triggered my memory.

    Also, something that gives me great benefit is chlorella. I take 2000 mg in the morning and 2000 mg before bed. I use the NOW brand which is widely available. Chlorella gives the stool shape and a natural form as well as making it a bit dark green. If I forget a day or two I’ll notice a difference in urgency and consistency of the stool. Chlorella had such a positive affect that I feel almost normal. It helped me go from 5-7 times a day with urgency to having about 2-3 practically normal stools without urgency. When I first started taking chlorella I did not know if could affect UC. In just 2-3 days I noticed a dramatic change. This was a serendipitous experience for me because I didn’t know the benefits of chlorella except that it was a healthy green food.

    Regarding discussion with your wife I encourage you to be honest and forthright with what you are experiencing so she can understand and relate to what you’re going through. She might notice how something makes a change for the better or worse for you, such as something you ate. Extra eyes, so to speak. Extra understanding. A cheerleader, helper and encourager! She needs to know.

    My best to you in your quest for good health. Yoga and deep breathing most likely help a lot. As you’ve suspected we do need a good oxygen supply. I’m impressed with your running marathons.

  2. Matt April 7, 2014 at 1:36 pm #

    I know its not for everyone, but when i run regularly, i’m much better and have far less symptoms. Could that be linked to oxygen in that when breathing hard, you’re taking more in and your blood is more oxygenated when the body is fit? Just a thought.

  3. Matt S. April 9, 2014 at 5:45 am #

    Yes I feel the same way about exercise. I notice a slight increase in symptoms when I quit running for a few weeks.

  4. John A
    John Augustat April 9, 2014 at 8:17 am #

    Matt and Matt S. –

    It sounds like exercise could be beneficial towards controlling our UC symptoms. When I’m actively exercising, I sleep better (plus no snoring) and my resting heart rate drops from low 80s to low 60s. I’m curious if the cells are getting more oxygen as the body becomes more efficient, which might keep symptoms under control. Obviously diet and exercise are a wonderful combination for everyone, problem with UC sufferers is having the energy and an open window to start a training program. I’ve been trying to start an exercise program for the last two years, but my UC and Prednisone have gotten in the way. Hopefully when I get over this current flare, I’ll have the energy get back into it and I’ll see if it quells my UC symptoms.

    Darlene, thanks for the info about Chlorella. This is a new one to me…I’ll have to check it out.

  5. Sher April 13, 2014 at 7:20 am #

    John-

    My last flare began in August when I was at a family members wedding… In Breckenridge, Colorado!!! My GP and I both blamed it on the drinking at the wedding, upsetting my colon… Not the altitude. And now I’m still dealing with getting under control. I’ve never thought of that being a connection, but if it is, what about flying? Would that be a problem… or since the cabins are pressurized maybe we still get the oxygen we need. I think I’ll stay away from Colorado for a bit! Maybe we need less prednisone treatment and more oxygen treatment!

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