background: I’m Tinny. I was recently diagnosed with severe ulcerative colitis.
I don’t know if my story is useful, as I’m not exactly in remission yet and I know I’m one of millions, but I hope it helps anyone out there going through a similar situation stay positive knowing they’re not alone. :-)
Before this story I’d just like to add, that like most people here, before I became ill I was a very healthy, very active and well balanced bloke. (my girlfriend is a Celiac, so fresh food is always eaten!) So this situation was more than a shock!
Anyway, on with the plot…
I’m a 34 year old British Graphic/Web Designer living on a small Island in the Irish Sea called the Isle of Man and being a big motor racing fan both myself and my Girlfriend decided to hit the road and go to watch the Formula 1 at the Nurburgring (Germany). So we packed the Audi and went. After 1000 miles, the lovely smell of racing oil, plenty of trackside c*ap food and a blast to Euro Disney we arrived home feeling great! The only problem was while we were away I had the most offensive, lingering, almost relationship ending flatulence I’ve ever encountered in my life. I put it down to the Bratwurst and curry sauce (man I love that stuff).
As it turns out, It could’ve been something more serious, like a bout of Gastritis. Either way, within 24hrs of returning home I had the most aggressive diarrhea I’ve ever encountered. I’ve never really had much problem with it before and it’s usually down to something I’ve eaten, so goes away by itself after a couple of days. However, after two days it was still there and getting worse, not to mention including blood, so I leapfrogged between toilets to get to my friendly doctors surgery where she diagnosed me with food poisoning and sent me home with a course of antibiotics.
This didn’t help. After four days things were getting worse. I was going to the toilet about 10-15 times a day, the pain was excruciating and the blood was increasing in volume to scary levels. So, I leapfrogged to the doctors surgery again, but my normal doctor wasn’t in, so I saw another member of the team. I explained to her the whole scenario and how things had increased and she decided the best course of action was for me to take Immodium. I was shocked! “are you sure that’s a good idea, considering the blood I’m loosing?” i said. “Yes” was her response.
Within 24 hours I was admitted to Hospital through the ITU (intensive care unit, or emergency room). Needless to say, I won’t be seeing that doctor again!
I was hooked up to a drip, bloods… etc… the usual stuff that we loose when essential fluids fall from the rear and carted up to a private isolation room while they figured out what was wrong with me. After 4 days of poking, cameras, needles and saving interesting looking stools they decided I had Ulcerative Colitis (with the potential of having Crohn’s).
So, i was wheeled out of the room (because I wasn’t contagious) into an intensive ward with some poor guys with vastly more scary illnesses than mine. It sounds horrible, especially when people are dieing around you and you can’t sleep because alarms are beeping around you 24 hrs a day, but it was very sobering and made me realize that things could be a hell of a lot worse than heading to the loo dragging an IV machine about.
Initially they tried me just on the Asacol and Steroids. They didn’t work. Then the specialist and his team decided from previous experience that hitting me hard with medication and then weaning me off was the better option, but because of the severeness they couldn’t guarantee it would work and there was (still is) a very real prospect I could loose my bowl. So, they hit me. To say I’ve been on everything is not an understatement. The only one I wasn’t on for long was Azathaprine, because it messed with my Liver. The final concoction of I.V. treatment that helped was 4hrs a day of Cyclosplorine, Hydrocortizone 4 times a day and 4x Anacol Tablets twice a day and a strong antibiotic I forget the name of. This lovely spread of medication was pumped into me for about a month. However, I did loose 1.5 stone through the Diarrhea, so they also hooked me up to a 24hr a day ‘feed’ for a week. This didn’t work out well.
I was told to eat normally with the ‘feed’, which lead to me increasing weight extremely quickly. So quickly in fact, that when the weekend came I was about 1 stone over my normal weight and had retained so much moisture that my legs, feet, hips were massively swollen. (my penis and scrotum were also the size of the jolly green giants, but you don’t really wanna hear that). I couldn’t even walk to the toilet! Needless to say, they unhooked me from the feed.
All in all, the massive hit of medication did help, and after a further 3 weeks I was down to 4 stools a day without blood. I was still on the ‘low residue diet’ and still had mushy stools, but I was generally feeling much better and going insane in the hospital! Dr. Ashdown decided that enough was enough, unhooked me from all the I.V.’s (wahoo!) and put me on oral medication. Within two days I was home and signed off for another month from work (which I’m gutted about, i hate bumming around the house for too long!).
Well, that’s where I am physically and at the point in the story. At home. I’ve now been home for 3 weeks now and found I’m still having ups and downs with cramps, wind, sweats, mood swings, shakes, insomnia, no blood, but no solid stools either. I’ve always been a very big eater and now I’m quite nervous of venturing from ‘safe’ easy to ‘pass’ food.
In the morning I’m taking 4x Asacol, 4x Prednisolone, Calcium, 1x Omeprazole, 3x Tacrolimus and 2x Mercaptopurine. In the evening I neck 4x Tacrolimus, 4x Prednisolone, Calcium and 4x Asacol. At first I had a bit of a relapse when I returned home and went up to about 10 stools a day again, but this eased off after about a week and now I’m between 4-6 a day. The worrying thing is, when I don’t take the medication I do feel the difference and need to hit the ‘throne’ more. So what happens when I eventually come off the medication?? It’s a very daunting prospect, which is the reason why I’m going to introduce the SCD diet and see what happens… I haven’t got anything to loose!
Anyway, i don’t know if my story’s useful, but it’s helped me get a few things off my chest! :-)
If anybody has any advice for me I’d really appreciate it. I’m still at an early stage in this illness and I’m not getting much info from my nutritionist or doctor. I’m really trying to find my feet and come to terms with a few things, so any information is so very much appreciated.
Gotta go now, the throne room beckons.
Big Shout Out to Adam for creating a place to vent, and source of Colitis education, I’m making your smoothy breakfast tomorrow morning!
Submitted By Tinny in the Colitis Venting Area