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Needing to Vent From My Sick Bed

It’s currently 23:00 in the UK, live from my hospital bed, and I just need to vent to other people who understand.

I was diagnosed with Ulcerative Colitis in November 2010 (post colonoscopy and two months of symptoms). It finally came under control in May 2011 following a combination of Asacol, Prednisolone and Azathioprene. Unfortunately, maintaining with Azathioprene brought on neutrophenia. After finally coming off that, I had a lovely three months of normal life.

Unfortunately, those three months ended in September 2011 with an increase in my neutrophils (good) but the on-set of my current flare-up. My doc put me back on a hefty but reducing dose of prednisolone straight-away, but it didn’t do much other than temper the symptoms at a nice routine of 10-12 trips to the loo all day and all night. And, apply for funding approval for infliximab.

At my one month follow up, he decided to admit me to hospital because there was no change with the steroids, and no sleep for that long was taking it’s toll. I’ve been in hospital now for over two weeks, having had IV hydrocortisone, cyclosporin infusions and my first infusion of infliximab three days ago. So far, no constant trips to the toilet, but still lots of trapped air, mucus, no bowel movements and a whole lot of exhaustion and feeling down. Plus looking like a hairy chipmunk.

I’ve now been switched back to oral steroids, and told I can go home at the weekend if I don’t get worse. Problem is, I think tonight’s bloody mucus counts as worse. My flex sigmoidoscopy last week still showed severe inflammation, and not much improvement showed in the one from yesterday.

I suppose I just want someone to say that this might happen with the infliximab, and I should wait until I’ve had infusions two and three before seeing any kind of improvement. That and I’m stressed and cannot sleep because I think they might now say a) I need to go back on IV steroids for a few more days (but then will the same happen when I switch back to oral to go home?), or b) treatment-wise that’s all they can offer me, and the next best thing is surgery. My doc doesn’t want me back on azathioprene because it only maintains remission by killing off my white cells, which isn’t ideal for life.

Although I’m a fully independent 26-year old woman who never took a days sick for the colitis until I came into hospital, this is my first ever stay in hospital and I just want to go home to my Mummy, preferably with no blood.

Maybe I’m just cranky from nearly two months of no sleep and steroid mood-imbalances and making a big deal out of nothing, but any words of wisdom?

Submitted by “AP” in the COLITIS VENTING AREA

6 thoughts on “Needing to Vent From My Sick Bed”

  1. OrdinaryWorldWhereRU

    Steroids can make you very moody, even depressed. My doctor said 3 infusions or more depending on the person. I did see improvements with each successive infusion. I hope that will be the case for you. I am sorry for what you are going through and can empathize. I know it is nearly impossible but try to keep a glimmer of a positive thought to hang on to. Things will get better!

  2. hang in there! i was in a similar situation earlier this year, where they came very close multiple times to operating to remove my entire colon. every medication failed so they gave me infliximab. it took at least 7 days for the effects to start, and in those 7 days i got worse, but the docs held off and in the end i was able to escape without the surgery. hang in there, hopefully you will start improving soon!

  3. hey
    I totally hear where you are coming from, I was diagnosed in the summer of 2010, after spending many months being told I had a multitude of different ailments. My UC got progressively worse and in the February of this year was hospitalised due the fast rate of my symptoms. I was given every drug going and had a horrible time on cyclosporin that sent me to a very dark place. Eventually I asked to be placed on infliximab and was given it the very next day. I have to say I was not convinced as I was so ill! They even told me if my condition did not improve in a few days I would have to have the whole of my colon removed. thankfully after receiving the infliximab my symptoms slowed right down, although it has taken me until now to be in remission. I do also have to say a lot for the SCD diet which I am also convinced helped me recover. Maybe once you have your strength back and feel like trying the diet, it is worth a shot. I am now slowly reintroducing many foods I have not been able to eat for many months. It is difficult to say if it is a combination of the drugs I am on Azathioprene, Asacol and Infliximab and the diet have all contributed to my recovery. I am due to have my 6 month check up in November and hope I can be able to come off some of the drugs.
    I thought I would never get back to feeling normal again and at times I was at my wits end! But with determination and the support of your friends and family I am sure you will get there in the end. I hope you have managed to get out of the hospital and are back in the comfort of your own surroundings.

    take care

  4. I just wanted to say I feel the same as all of you. I am working on my diet and vitamins as much as possible. I am trying to avoid medications because I fell that they only mask the symptoms. My uncle had Uc and had to have his colon removed due to the amounts of steroids he was taking. If it all possible get off the steroids they are extremely bad for your health. I learned the best thing to do is avoid foods that bother you and everyone is not the same. I discovered i had uc when i was 26 and am now 31. It did go into remission for 2your years and then i had something stressfull happen and a lot changes, i am trying to get back on trackdiet and is taking longer the second time around. You really do have to focus on yourself. Good luck to everyone with this horrible disease and keep your friends and family in the know even though they may not understand. But they will always be there and may even help I know my support around me is helping. :)

  5. Hiya,

    Sympathy all the way! But please try to stay calm about your condition. We have to.

    I have Chronic UC. Diagnosed 18 months after the onset of symptoms back in 2004…. I can say that Yes, the steroids cause mood swings, the meds can also cause anxiety like symptoms and painful joints etc. Remember also that your body is going through hell with the constant medications being thrown at it. You’re allowed to get grumpy!

    Infliximab is kind of the last meds resort before an op might be looked at(not in every case though). Generally its used because the steroids no longer work short or long term. The infliximab can take a few months to really get into your system after the initial three doses but you should have noticed a difference within a couple of weeks. In my case the bleeding was sporadic after the first two doses and then stopped completely.

    It was told to me two years ago when I started it, that in order to hold back Chronic UC you need to have continued ‘maintenance’ infliximab infusions every 8 weeks.

    All the best :O)

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