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

SEX and UC

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….





prednisone, SCD

13 Responses to SEX and UC

  1. Pixie January 21, 2011 at 4:31 pm #

    Codeine Phos “not as good as smack…” LMAO, I love it… welcome to the Trots Superhighway. Nice to know you still have all your parts and that you’re feeling better. You’re very lucky to have a job where the get it and a wife is so very supportive. Sorry to hear about your little one having reflux, but most of time that’s temporary at that age and they grow out of it. Thanks for sharing your story… :)

    Blessings,

    Pix

    • Peter NZ January 22, 2011 at 12:12 am #

      Thanks Pixie,
      Little Mimi did indeed grow out of the reflux and is now a happy little girl who will be off to school this year. Dad is off to school again too…
      Cheers and all the best,
      Peter

  2. Keith Evans January 21, 2011 at 4:41 pm #

    This is the best post I have read in a while. Awesome!

    Love your attitude, your style and your success.

    Congrats buddy.

    • Peter NZ January 22, 2011 at 12:14 am #

      Thanks mate,
      Hope is all good with you,
      Cheers,
      Peter

  3. Seth January 22, 2011 at 1:03 am #

    Thanks for the story. That sounds like such a rough start! Pretty good, keeps me in check. My UC isn’t that bad

  4. Fay January 22, 2011 at 3:09 am #

    Thanks for sharing. I think it also shows how most of us wait too long to see if it will get better in the first place when we don’t now what we got. Any new readers to this page that have stumbled on us with not knowing what you have, just go to the doctors. And don’t forget, he maybe a Dr but he don’t know everything! I’ve just got happier cos i finally found a specialist that i trust and who i feel knows about colitis, all the ones before him knew about guts but weren’t specialised in what i have! You maybe embaressed about showing your butt off, it’s worth it in the end!

  5. Adam
    Adam January 22, 2011 at 10:41 pm #

    Hi Peter,
    Thanks so much for sharing your story. that is great that you are seeing some relief and living blood and pred free. Keep it up and keep us posted on how things go.
    have a great rest of the wekeend too!

  6. Debbie November 19, 2011 at 12:53 pm #

    Hello Peter,
    Thanks for sharing your story and I also use humor to stay positive as well. I think our stories are a little similar. I’ve had UC for 7 years now. I’ve had a few hospital stays, had a blood transfusion, and also been on alot of the medications for the UC. I’ve recently become a Vegatarian once I came across a book titled Self Healing Colitis & Crohns by David Klein Ph.D. I am scheduled for surgery next week but I do want to give this approach a chance before I decide to have my colon removed. I seem to go back and forth with my decision.
    Do you still experience flares and are you on any medications now? I’d appreciate your opionion on being Vegatarian and also having UC.

  7. Peter NZ November 19, 2011 at 5:52 pm #

    Hi Debbie,
    I also have been gluten-free fot the past year or so. This I believe has been very beneficial in my case. I have had a flare (just getting over it with help from colifoam) but not as bad as previous ones. I am not on pred orally just Pentasa 10 per day.
    This latest flare coincided with being given a course of antibiotics after being bitten by a rat I was trying to rescue from my cat. Might be coincidence but I was really well before that.
    Remember to watch your iron (via bloodtests) if you aren’t eating meat and are losing blood.
    Good luck to you with whatever option you choose.
    Peter

  8. Jeff uk February 26, 2012 at 3:26 am #

    Great piece !!

    Cheered me up as I think this is where I am heading. Have had symptoms that point to colitis but will know for sure in 2 weeks. Have altered my diet already to ease the pain and firm up the poppers.

  9. Matt February 26, 2012 at 4:15 am #

    I fell for the sex tag line…… The shame,

    You mentioned smoking. Did you take it up to help or have you always smoked? Did the flare coincide with quiting? I ask as I’m seriously thinking of starting again as a) my UC started when I quit and b) not much else is working at the mo.

    • PeterNZ February 26, 2012 at 5:03 pm #

      I can take or leave the smokes but I do find if I have a flare I smoke. I wouldn’t recommend starting again however.
      Good luck,
      Peter

  10. Channelle June 29, 2012 at 1:00 pm #

    That title cought my attention. lol. I’m amazed at your attitude. Stay positive.

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