Now that I have your attention…
On a dark and lonely highway known as “Devil’s Backbone Road” a man clenches uncomfortably and tries to fart without shitting his pants. He thinks there may already be some leakage but be can’t sure and keeps on riding anyway. Only another 50 k’s to go…what the f*** were we drinking last night?
Well that fella was me 5 years ago. Out of the blue I just started shitting blood. It started off slowly but within weeks I was a wreck. It looked like someone had thrown a glass of red wine in the toilet. 20 times a day.
I had just finished a MSc in marine ecology at university and scored a sweet environmental job in local government. My wife and were eagerly (imminently) expecting our first child. Being new in the job I didn’t want to let anyone down and just kept on working. I thought it was just a bug and would go away. It didn’t.
I worked within a team of great people and had a primo boss. Eventually I had to go tell the boss what was up. When I told him what was going on he reckoned I might have Crohns Disease. He had had it since he was young and my symptoms sounded like his.
After about a month my wife dragged me to the doctor who took one look at me and sent me to the hospital. They put me on a drip and pumped me full of meds. Nothing seemed to work and I was shitting about 2 litres of blood a day (they had me measure it with a bowl in the toilet). The surgeons were hovering saying that if I showed no improvement my colon would have to be removed. I was freaking out a bit as I hadn’t really even been in a hospital before this. My doctor said “Don’t worry mate, this is Cyclosporin and he’ll sort you out!”
And so he did.
After a day or two the blood had lessened heaps and I began to feel better. The doctors worked out a plan to get me out of hospital and meds to take when I got out. I think it took about a week and then they let me out. I was one of the lucky ones in our room – I think poor Mr X wasn’t going home again and his daughters were sleeping there around the clock with him. (That was one of the first lessons of Colitis I learnt: you aren’t so bad – that guy has serious issues! Be thankful and get on with it).
My work was real sweet about it and said they would keep paying me and I could do half days till I got better. Awesome. I went back to work as quick as I could and a few weeks later our daughter was born. When I was in the hospital I didn’t think I’d be able to make the birth.
My wife was a tower of strength, love and caring and as you can imagine it was a pretty crazy time – a new baby (who had reflux and didn’t sleep) and a husband on the flare or straight back to work – and things went well for a while but the flares kept happening and the doctors kept saying I should look at surgery and be “cured”. I really didn’t want surgery and would take Pred to keep it at bay. I was probably on Pred for about 4 years. Every time I’d taper to less that 10mg (which took months as I’m sure you know) the blood would come back with a vengeance. I was on Azathioprine and Pentasa too.
The meds weren’t treating me too well but I thought it was better than the “cure” or the flares. I had the usual symptoms from the Pred and a routine blood test picked up a crash in red and white blood cells. Back to hospital again. Blood transfusions (I dreamt I was a classic car restorer and member of the Rotary club!) were required to get me up to scratch. I had like nil immune system and ½ the haemoglobin I was supposed to have. No wonder I felt tired! Apparently I had “Azathioprine Toxicity” and it had overly suppressed my bone marrow so it wasn’t making anymore new cells. I stopped the Azathioprine and things got better.
I still continued to have flares 2 or 3 times a year. Each time I was laid up for a month or so and pretty much couldn’t do a lot. Lot of nodding off on the pain killers. I started my own business and enrolled in a PhD but had to withdraw twice before I had even started.
Then during one of my Tours de Colitis on the internet I found this site. Taking on board advice from the postings I again tapered off the Pred and at the same time removed gluten from my diet (SCD isn’t really for me as I am a plant eating pussy (vegetarian) and it wouldn’t really leave much else!) with great results. I have not needed Pred since August 2010, or something, and have not had a flare. This is the longest time since I got colitis that I have been blood -free and Pred -free and life is good. Colitis is not the end of the world – sure it can get pretty bad. There is always light at the end of the tunnel. There are loads of people out there with the same thing and there is loads of info and things that just might be worth a try. And that is why I shared my story. Thank you Adam. Thank you the posters. I hope this tale helps someone else out. Good luck to you all.
Peter
Peter’s little helpers have included:
- Prednisone (Pred is your friend!)
- Cyclosporin (A quick fling)
- Pentasa (Good morning! Good night!)
- Red wine (’cause I can’t drink blood)
- Azathioprine (A long relationship that left me shattered)
- Codeine phos. (Not as good as smack)
- Paracetamol (No buzz at all)
- Cal D Forte (A monthly liaison)
- Tobacco (Smoking makes you cool!)
- Tramadol (Gets you dancing)
- Iron transfusion (Never again)
- And what ever else has been pumped into my veins in hospital: Antibiotics, antispasmodics, antimatter….
The author has had a long standing relationship with ulcerative colitis and enjoys reading and long walks on the beach. It has been commented that the author has the body and mind of a cat.
