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

It May Not Seem Like It, But There will Be Better Days

I was first diagnosed with ulcerative colitis in 1980 when I was 27.

I am now 58. I bled for 6 months before I told my first wife. When I did, she was really pissed. I went to a local doctor (not sure if he was a gastroenterologist or not) and he asked me, “Have you ever had anal sex?” I said, “NO!” He then asked, “Are you SURE?” I’m thinking, “Uhhhhh, yeah Doc, that’s something I would remember, you idiot.”

Anyway, I went through a number of years suffering; visiting doctors who really had no clue on how to treat me. This was in the early 80’s and the only meds I was given was sulfasalazine. Either the drug didn’t work for me or the dosage was never correct.

Then I would go through a few years of remission where I could workout and compete in bodybuilding contests. I even started college in late ’83 (where I met my 2nd wife) but only attended one semester since my colitis started to flare up and I was spending more time in the bathroom than the classroom. So, I went to work for my wife’s family.

doctor asking about anal sex comic

ulcerative colitis bodybuilder comic

All was well again for a few years. In the summer of ’86 in between bodybuilding contests, I would eat like crazy trying to gain weight. During one period, I was even drinking a gallon of milk a day. I weighed around 240 lbs. Then, my body decided that it was “lactose intolerant,” (SURPRISE!!) had had enough of the milk, enough of the food, and rejected everything that I had been consuming. In short, I had a number of massive flare ups, going up to 27 times a day and losing all of the weight I had gained and more.

I was sick for 2 years straight where I almost never left my apt. I was so desperate, I was willing to try anything to get better. My brother had mentioned that he had had a “colonic” (for whatever reason) and maybe I should give that a try. I found a local clinic that offered that procedure and had it done. The next day, I started to feel sick, bleeding more than ever and spending more time in bed. Within a few weeks, I was bedridden, my wife had to spoon feed me, my eyes were light sensitive at night (I had to wear an eye mask) and had to put ear plugs in my ears. My body was starting to shut down and I didn’t even know it. I would try to get up at night to go to the bathroom but would fall down. This was in the Spring of ’88.

For 2 consecutive nights, I “dreamed” that I was dying. Very vivid. My body was spread-eagled on its back, going down a very long funnel that was grey and swirling around (picture maybe the inside of a tornado). My consciousness was looking down on me. I remember thinking, “If this is eternity, it sure is a long way.” An odd thing to think of in a “dream,” don’t you think?

The next day was a Saturday and my wife called my doctor. He told her that if she didn’t take me to the hospital, he would send an ambulance and it would cost us $200. That made me mad so I made it to the car and was taken to the emergency room where I had to wait 9 hours for a room. During that time, I almost bled to death as my bowels were shutting down and stuff mixed with blood just kept coming out. They filled bed pan after bed pan trying to catch all the “stuff.”

That night, I was given a blood transfusion with 6 pts of blood and 4 pts of plasma, I had no oxygen in my blood, my hemoglobin was down to 7 (body manufactures at 10.3), and my protein was down to 4 (body manufactures at 7-8). In my mind, I still weighed around 207 lbs, which was a good off-season weight for me. The next morning, the nurse came in to weigh me. Struggling out of bed, I stepped on the scale and it read 157! I told the nurse her scale was “wrong,” and to weigh me again. She did, and again it read 157. I was heartbroken, I started to cry. Somehow, I had lost 50 pounds (which is a big blow to someone who liked being big and prided himself on the way he looked), and I could not face that fact. Like I said, in my mind, I still weighed over 200 lbs.

Later in the day, a doctor came in my room and told me that if my wife had not had brought me into the hospital when she did, I would have died last night for sure. I told him about the colonic and he said that that was the worst thing I could’ve done, since doing that was like, “putting a Roto Rooter” up inside me. I was in the hospital for 13 days. Funny, you get used to being in there. But, it was great when I finally left. Feeling the wind, seeing the sunshine and the people outside. It’s the little things that you miss and learn to appreciate.

Kept hospital hours for awhile (awake at 2 am and up at 5 am) and it was a struggle to eat and take a shower. But, each day was a little better and I eventually got stronger and gained my weight back.

I never competed in bodybuilding again, but the next year, I did start my own small business. That was 1989. I lost it though in 1995 and the stress of that really affected my health. I eventually found a good gastroenterologist who put me on Asacol and that has been working well for me.

My last flare-up was just 2 months ago, after 3 years of having no problems.  It was sudden and debilitating. I had run out of Asacol and could not afford my meds. I was getting them free but the company was sold and the new company is not offering the same program. I was on the toilet for up to 28 times a day at times. Then my wife found a program that got me my meds, I started taking them and after a month, I was better.

I still have a problem leaving the house in the early morning. In fact, I would rather not. I am not working, but that fact puts a big damper in me looking for a full-time job. I have 2 advanced degrees but zero experience in either discipline which does not help. I would love to own my own business again but don’t have the capital nor a clue on what to do.

Ulcerative Colitis Medications:

Asacol works well for me. After years of taking 6 a day (2-3x’s) my doc had me down to 4 a day. Now I am back on 6 pills a day. I have taken Prednizone in the past (3 years ago) when I would actually bleed a lot, but don’t like taking them. This past flare up, I did not bleed even though there was a bit at times on the tp, but not in the bowl.

 

Submitted by Mike S. in the Colitis Venting Area




bodybuilder, colonic

5 Responses to It May Not Seem Like It, But There will Be Better Days

  1. Karen October 22, 2011 at 6:30 am #

    I am encouraged by your story. I am 64 and was diagnosed with UC about a year ago. I am on asacol and it seems to work. What kind of diet do you follow? I do not have health insurance and have to pay for the asacol. I take the 800 mg tablet. You said you found a program to help pay for it? Could you tell me what that program was? I struggle to buy the drug.

    Thanks Karen

  2. Mike S. October 22, 2011 at 11:33 am #

    Hi Karen,

    Yeah, Asacol works for me well also. The only “diet” I follow is one where I cannot eat too much of certain foods. For example, “tomato” based products e.g., sauces, chili, pizza, etc. If I do, I try to eat a smaller portion, or go “light” on the pizza sauce, that kind of thing. Also, I cannot eat anything too spicy either. Again, if I do, it’s only a small amt. No milk products either. I drink Lactaid milk and Breyers lactose free ice cream. I take the 400 mg. tabs and the program I used to go through was with Proctor and Gamble who makes Asacol. The program I currently go through is a state-aid based one. I hate being on it but with kids and no job, I am pretty much forced to at this point. Good luck to you. I hope you are doing well.

  3. Heather October 24, 2011 at 5:40 am #

    Love your post….thanks for sharing. I was just diagnosed with UC in September.

  4. Blake October 24, 2011 at 8:47 pm #

    Hey Mike,
    Just read your story and couldn’t help to think that your story sounds like what my life is heading towards. I’m big into lifting weights and have always enjoyed doing so. Now I’m 30, stuck with this horrible disease, trying all sorts of diets (eating next to nothing), taking all the drugs like Pred and asacol, supplements like AMP floracel, have horrible mornings and nights in the bathroom (todays shit count is at 16 already) and its been going on 3 months. I’ve lost 25 lbs and keep dropping, losing all that mass I spent years working for. I feel like I’m gonna have to make a decision about surgery soon if things don’t start getting any better for me. Having roid rage from the prednisone and worried about losing my job and sanity with this disease. Always prided myself for never taking anabolic steroids and now the doctor has me on steroids that just destroy me. I keep having to remind myself I’ll get out of this flare soon, but sometimes feel like I’m kidding myself. This disease really sucks, sometimes wish I was just missing my legs or something, but that’s just irrational thinking. I love this website cause I can connect with people like yourself and share our misery, our success stories and our poo humor. Keep your head up bud, I feel awful you have struggled so long and wonder what lies ahead of me. Ever tried SCD diet. Its works great for a lot of UCers and I’ve been on it for over a month now with little to no relief yet, but I’m keeping hope alive.

    • Joshua Cavallo March 21, 2013 at 12:15 am #

      Stay positive Blake, im in the same boat.. gym and fitness were my life and when I was diagnosed with UC stuck in hospital for 10 days I lost all my gains and my life changed with a blink of an eye. But guess what? life goes on and we are here to beat this disease and not let it rule us, a flare only lasts so long and once in remission achieve the success and fitness goals which you dreamed of before diagnosis. I have only just been diagnosed and just about out of my first severe flare up, and once in remission I will continue to achieve the goals which I set out for before this disease came along, I run a facebook page called Gymzit where I motivate thousands of people to achieve there fitness goals check us out here and stay strong.

      http://www.facebook.com/gymzitfitness

      Josh

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