• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My story

1986 I quit smoking in Dec. and almost immediately started getting UC symptoms. It took more than a month to get a diagnosis and by them 1/2 my colon was involved. My boss thought I was doing drugs because I looked more like Keith Richards than a 24 year old guy. Spent the next 20 months on prednisone, a lot of the time at 50mg/day. One day in 1988 I blacked out, head first into the fireplace, so my girlfriend took me the hospital. After 2 weeks in hospital and the next 6 months at home my UC was still getting worse. Life sucked. One day I picked up one of her smokes and and that was it I was hooked again. But within a week my symptoms were gone and I was able to return to work a week later.

1994 my wife, who was 4 months pregnant, asked me to quit. I did. 2 weeks later my UC was back with a vengeance. 2 more weeks and I'm already in hospital with it. In for 2 weeks, out for 2 weeks, in 2, out 2 and in this time for surgery. I now have an S ileal pouch. The day I gout of hospital I had been sick for a few months, multiple blood transfusions, major surgery, my hair was falling out in handfuls and I was pretty much wiped out. My wife who was 8 months pregnant now ended up pushing me out the door in a wheelchair.

A month later my first son was born and two days after that I started a new job. Due to all of this I put off the closure surgery to 6 months later instead of 6 weeks. At first all seemed to go well with the ostomy, except for ne or two mishaps. But then I got some kind of infection in the skin around the ostoma site and the bag wouldn't stay on longer than a few hours. It got to me quite a challenge to stay at work for a whole day. After six months I had the closure surgery and all was well.

2001 I started getting bowel obstructions from the scar tissue. At first they were just really bad stomach cramps but within a year they were getting pretty bad. Over the next 8 years I had more obstructions than I can remember let alone count.

2009 I had another surgery to remove scar tissue and haven't had any blockages since then.

My biggest problem today is whenever I get the flu there is not a chance in hell of staying hydrated. I almost always end up in emergency to get treated for dehydration. The last time this happened was two weeks ago, Dec. 22 2012.

No matter what my pouch is way better than UC even after all the blockages and surgery.
 
Sounds like you have had a rough time. This site is a great place to get support and lots of information...
wishing you the best.
 
Oh canuck, sending hugs your way. Hi and welcome to the forum. Have a look around, get comfy- there is information, support, advice, guidance, laughing and crying with you to be found here.
Are you currently symptom free? Is there any meds you are currently taking? Have you kept a food diary/journal throughtout these rough times, helping you be more aware of flare causes and dehydration triggers? Yes, it sounds funny but caffiene and alcohol ( and carbonation for some) can be dehydrating. There are some great tips on here for juicing, which may be a great benefit to you. Also, have you tried ensure/boost ( at least one per day) for nutrients and supplementation. I am on a strict regimen of gatorade for hydration. Have you considered this or powerade?
Have you had your vitamin levels checked lately? This isn't such a bad idea as most of us are deficient in vit d, vit b-12 and magnesium the most. Going on some type of EN ( enteral nutrician) may help with dehydration, supplementation and our essential nutrients.
I would also like to invite you to visit our stoma sub forum. There are others there whom I'm sure could offer advice or relate to what you're going through. Bless you! Thoughts and prayers with you. Best of luck! Keep us posted on how you get along. -hugs-
 
Sounds like you have had a rough time. This site is a great place to get support and lots of information...
wishing you the best.
I hope your daughter can find a way to live with whatever happens. That was very important for me and helped a lot to deal with the stuff that happens.

Maybe the thing I did the best was simply to find a way to live with it.
 
Are you currently symptom free? Is there any meds you are currently taking? Have you kept a food diary/journal throughtout these rough times, helping you be more aware of flare causes and dehydration triggers? Yes, it sounds funny but caffeine and alcohol (and carbonation for some) can be dehydrating. through. -hugs-
I was symptom free until this part few days. I have had some significant pouchitis symptoms. I'm getting scoped Friday.

I don't take any meds but do supplement with Vitamin D, B, B12 and I was on iron for 6 months. My iron levels are up from 6 months ago but still way down from 15 years ago. I find Gatorade causes more problems than it helps, I'm guessing because of the sugar content. I'm going to look into Morton's salt though.

Coffee, ya, one cup a day habit I should try to drop, but I love it so much. I don't drink very much alcohol or pop/soda though.

I've had my levels checked over the years, and right up until last week. It seems western medicine isn't focused so much on what a healthy level is but just on a minimum level before you suffer dire consequences. My iron levels have dropped significantly over the years but are still barely above the minimum threshold. GP doesn't seem to think that's a problem. Homeopathy practitioner sold me some iron supplements which brought my level up a little and some other signs/symptoms went away. Apparently pouchitis is also related to liver issues I have discovered. I have had mildly elevated liver enzymes for several years as well. Maybe I have had mild pouchitis for a while.

I haven't kept a food journal or poop diary for years, but I'm going to start again. Things changed since my last surgery.

I'm also going to chat with a nutritionist, hopefully get some advice there and I will also check out the other forums for 'juicing' and other tips and things.
 
Top