ulcerative colitis ebook

My Rant on Ulcerative Colitis

Intro: 48 years old diagnosed with UC 2 years ago, I had it for about 3 years before I got the courage to get something done.

Some more about me:

I am IT consultant love running I am currently training for the reserves in the Royal air force.

Symptoms:

Loose bowel movement bloody stools cramps and generally feeling crap (pun intended)

My Rant on Ulcerative Colitis

I all started with a bit of blood any probably like most of you I thought piles right? wrong I ignored it too embarrassed to go to the doctor until 3 years later and I am feeling so bad I can’t eat anymore. I spent most of my time in the toilet and most of my money on toilet paper.

So finally I get to my GP (doctor) and he runs a lot tests but all come back fine and he is about to leave it and give me some creams for fissures or piles but I lost it unfortunately and said hell no I want a referral to a specialist hospital finally after waiting months I get a wonderful colonoscopy Oh the joys of modern medicine, I was finally diagnosed with UC and started on Asacol every month going back to the hospital the dose increased, I am now on 6 800mg a day and still I have the symptoms some days better some worse. They tried me on the predisonone that was almost lke having my life back again but the noid rage kicked in real bad I turned into the green monster (don’t make me angry you wouldn’t like me when I am angry) impossible to live with.

I remember one particular evening I shouted so loud at my stepdaughter she ended up crying ( I still hate myself for that one) weaned off the predisonone and it all came back like a bad guest that wouldn’t leave back to my wonderful specialist who thought maybe more predisonone , one look at me changes his mind straight away I will never take that stuff again I would prefer to suffer the ulcerative colitis. So now we come to the most recent 8 months of Asacol 800g 6 a day they had me on the foam enema but its no longer available and the pentasa I can’t stand. My wonderful specialist has prescribed me Azathioprine seriously are they taking the p**s that is listed as a human carcinogen the side effects are ridiculous with nausea bruising bone marrow problems constant blood test to check liver functions. So although I have the medication I really don’t want to use it. I am working abroad for the UN living by myself in Italy, I have already had a huge flare up in the winter where a sore throat became so bad they had to take me into hospital apparently all got to do with my UC. My doctor in the UN thinks I should try it but I am skeptical.

Has anyone got any feedback on Azathioprine ? am I overreacting ? . As most of you have probably found out stress plays a huge part in your UC I am particularly stressed for the past few years with a custody battle for my stepdaughter and on my side my ex wife harassing me that plus been made redundant didn’t help, since moving here to Italy (by myself my family are still trying to join me) stress levels have gone down but I had a solicitors letter sent to my parents house Friday back home and my ex is starting off again. Yesterday and today the flare up has started and it in full swing now at 6 to 8 runs to the bathroom (glad I took up running now) and increasing, I have the beautiful mouth ulcers that accompany this wonderful UC and my throat infection has started, taking antibiotics for this but still not hitting the mark. This disease just gets me so down sometimes you feel like lying down and crying and giving it all up. Thanks for listening to my ranting happy tha t at least someone understands. Love you the web page thanks for putting it up.

Ask Adam:

“Hi Adam

just wondering have you ever been prescribed Azathioprine and how you found it ? Did you ever get the mouth ulcers and sore throats or is that privilege reserved only for me ? Love your webpage thanks for putting it up, It’s reading something like this that makes it a bit more bearable.
BTW how is your UC doing lately ?”

written by Dermot B

submitted in the colitis venting area

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Thanks for Sharing Dermot,

I definitely remember talking to my doctor about azathioprine, it was back when my UC was real bad in 2008-2009 and I was running out of medications to try.  But, I never did end up filling that prescription so I don’t have any personal experience with it.  I’m guessing that you’re not the only one with strange symptoms such as mouth ulcers, or should we just call them side effects right…

As for my UC, its doing very good.  Come September it will be two full years since I’ll have seen any doctor for anything, so my overall health has been great too for the most part.  (Yes my wife is still convinced my brain is all messed up since I’ve been annoying the hell out of her lately but we can’t win them all right:)    I’ve been really focusing on getting fresh sauerkraut into my diet on a several times a week basis and I think that has been a positive addition to the foods I normally eat.

I wish you the best in moving forward, and best of luck to you in the coming days and weeks and months.

-Adam


colitis writing area


12 Responses to “My Rant on Ulcerative Colitis”

  1. Kim YJuly 1, 2014 at 7:46 am #

    Also “STAY AWAY FROM ALL DAIRY”

    • Dermot BJuly 1, 2014 at 3:14 pm #

      Hi Kim

      I never had any problems taking dairy products and to tell you the truth I refuse to be buliied into submission by my UC I like my yougurts cheeses butter and a lot more so even if it did have an effect this is where I draw the line and say screw it I need some pleasure. I hear you though also I know beer and alcohol are bad generally but hey I need to live a little I prefer to live with the discomfort and enjoy a bit than been so cautious I want to give up on life screw you UC I will not be bullied. Lol thanks Kim for the advice though. awesome.

      Dermot

  2. RachelJuly 1, 2014 at 8:35 am #

    Hi Dermot

    I have been started on azathioprine for the past two weeks now and increased from 50mg to 100mg a week ago. It does take a few weeks to take effect but I can honestly say so far no side effects. I am weaning off the prednisolone and am now only on 10mg a day and going down to 5mg tomorrow for a week before stopping them. I have been suffering a flare since March and this time it has made me really down. It’s not been this persistent before and it has taken a whole cocktail of the right drugs to get it controlled. Basically the asacol has stopped working and it’s not safe to stay on the prednisolone or to have to take course after course of it so my doc started me on Azathioprine. I did A LOT of research on the drug before I took it and spoke to a few people on here and other forums who had taken the drug for years and asked them for their experiences. I would advise you to find Cameron on here who has a thread called 6 years and inflammation free. He was such a help to me and the azathioprine has worked really well for him. He has no inflammation at all in his colon anymore and as such may be in a position to stop the drug. I have been told to take it for two years and if I respond well to it with no flare ups in between and colonoscopy shows no inflammation then I can stop it and just go back on asacol.

    As far as I’m concerned I would rather take a drug that keeps me well with no side effects (unlike prednisone) and take the chance of MAYBE getting some sort of side effect in years to come. I want to live for now and well I will cross any bridge when I come to it. I have been told that azathioprine is the first level treatment for children with uc as it’s the safest for them so that shoul make u feel better.

    I’m fairly new to the drug so will have to see myself how I respond but give me a shout if you want to know more or just want to vent!

  3. Dermot BJuly 1, 2014 at 9:11 am #

    Thanks for the reply Rachel, I would be interested to see how you get on with it. I have been trying the olive oil which worked for a while but seems to have worn off unfortunately, I had stopped the pentasa because I had used the asacol foam and that worked great but its not in production anymore, I just this week started the pentasa again as I have tons of the stuff although its really unpleasant it seems to be working , I can say for sure early days yet but with the high dose of Asacol and th pentasa i am hoping it will bring it down. I am sick of the mouth ulcers sometimes they get so bad I cant eat but its not so bad at the moment just a few.

    Please keep me informed of how you get on I will be very keen to see what happens. Thanks once again it does help to hear others speak of the same disease sometime I think I am the only one it gets so frustrating as you no doubt have experienced. Please keep in touch.

    Regards

    Dermot

  4. SandiJuly 1, 2014 at 11:05 am #

    Hi Dermot, I have been diagnosed with UC for 8 years and for the last 2 I have been on Azathioprine initially 100mg daily and recently upped to 125mg daily and it has made a big difference to my life. My GP also prescribed codeine 30 mg x2 daily and this acts as a brake and slows down when and how often I go. Now have solid stools and still go probably 5 times daily but it does not hurt and there is no blood or diahorea. I have pentasa to try but I am not sure if I will be able to get it in and keep it in – any tips? Sandi

  5. Dermot BJuly 1, 2014 at 3:08 pm #

    Hi Sandi

    I find last thing at night lie on your side and squeeze it in gently, you may feel a cramp but just hang in there try not move about prop yourself up on some pillows and make sure you don’t get disturbed last thing you want is to have to move around. I initially had problems with it but as I said just slowly slowly and then stay on your side bring a book iphone or something to take your mind off it and you will notice it will pass the urge to run to the toilet. Hope this helps If you can get your hands on Asacol foam enema its amazing a lot easier and let liquid but for some reason they have stopped making it in the UK, I am not sure where you are based.

    Regards

    Dermot

  6. PeterNZJuly 1, 2014 at 7:53 pm #

    Hi Babyface,
    Yeah, that Azathioprine buggered my bone marrow mate. I don’t think it ever got properly better even though I stopped taking it. The blood tests are crucial to detect side effects. I had methotrexate after that and that wasn’t a bundle of joy either.
    If you are getting ulcers in your mouth consider Chrone’s and discuss with specialist.
    Good luck,
    Peter

  7. ShiloJuly 1, 2014 at 9:08 pm #

    Hi my name is Shilo and I had a J-pouch procedure in 2003. I too have lots of bathroom visits! I also have mouth sores that don’t go away. I thought only Crohns patients got that. Maybe I’m wrong. Just wondering if other people with J-pouches experience mouth sores?
    Thanks, Shilo

  8. Becka K
    BeccaJuly 3, 2014 at 7:03 am #

    It’s a holiday weekend coming up and here I sit ordering more friggin’ vsl#3 online (to the tune of $330). The amount of money I spend each month on supplements, probiotics and scripts could be a car payment on a friggin’ BMW!!!!!!!!!!!!! All this while watching my friggin’ diet (SCD) AND STILL on 60 mg pred and bleeding like a gutted goat into the crapper every morning! I AM SO TIRED OF THIS! You know what I want? I want to eat a friggin’ cheeseburger ON A ROLL WITH CHEESE DRIPPING ALL OVER IT AND WASH IT DOWN WITH AN ICY COLD BEER THAT ISN’T GLUTEN FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (sorry about that…I feel better now)….well, no I don’t, but I will try :)

  9. Dermot BJuly 3, 2014 at 11:50 am #

    Lol I feel you Becca sometimes its just the stress of if can make it work, I saw that there was a survey done about running and keeping fit and whether it helps your UC I personally am pretending I dont have it and tell my body its not real lol I try to ignore it as much as possible. I stay away from some of the obvious I am in Italy at the moment and had an expresso while dipping my ice cream into it that was a baaad move lol but tasted awesome at the time. I go have a beer now and again I find the gas in it can mess me up big time wine on the other hand is not so bad and while it doesnt have a great effect on me it not killing me in the first few minutes I can cope a night and maybe the next day pay the piper.

    Don’t give up on it keep trying things also I will keep saying it destress your self if that is even a word. It pays a huge part in UC . I am getting better eating what i want (up to a point) look after yourself spoil your self a bit otherwise life really does feel like the stuff that come out the other maybe try a small amount of what you really like or just avoid the real obvious like a flame grilled burger without all the extras that make you feel dodgy. and maybe a nice cold beer with it. I truly sympathise with you and come vent your frustration any time, we all need to. Take care praying that you get a breakthrough soon.

    Dermot

  10. LynseyJuly 4, 2014 at 6:55 am #

    Hi, I’m 16 and was diagnosed with UC in August 2012 at 14. (This is my first post on here)
    I started noticing symptoms a long while before it became noticeable and I was taken into hospital, very very lucky I was taken in at this time and given the blood transfusion that saved my life, later to be diagnosed with this disease I’d never heard of before. I was started on Azathioprine early last year and it has kept me in remission since. On first starting the medication, 100mg a day, I did experience a little vomiting and a lot of nausea but that only lasted a couple of days and in my opinion was definitely worth the remission. However, earlier this year I did have a problem with the azathioprine. I started off with a slight throat infection which over time developed into glandular fever and tonsillitis as the azathioprine lowered my white blood cell count too much. Despite this being a bit of a pain, it was solved by a few days off the meds and I was back on the mend again. There is the possibility of a lot of scary side effects but I have to go for routine blood tests every few months to monitor my body and make sure nothing out of the ordinary is happening. I would definitely recommend trying the drug if your doctor agrees with it!
    Hope this helps and everything starts looking up soon :)

  11. Dermot BJuly 4, 2014 at 9:14 am #

    Hi Lynsey

    thanks for taking the time to give give me some feedback. yes everything helps get an overall picture of what to expect from this drug. It ‘s sitting in my room staring up at me every day. I have been symptom free for about 5 days now I know its early days but the only difference I have done is use the pentasa once a night and keep up my 6 800mg Asacol its working so I will see how that works out. I have so much pentata stock piled in the bathroom I cant find room for it any more lol I am sticking it in cupboards and hiding it anywhere I can find so I wont run out of it in a hurry. Keep me posting on any developments with azathioprine or any other drug that you seem to be having a success with. Thanks again for your reply.

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