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A 2 year battle wondering if there are similar stories out there?

Posted , 4 users are following.

CC2015
CC2015

Hi Guys

i am new to this forum any advice would really be appreciated - here is a history of my IBD.

My illness began July 2012 I would pass blood and mucus 20+ times daily severe tummy cramps close to passing out trips to A&E suspected tummy bugs the norm when firstly being diagnosed. I managed to get a sigmoidoscopy 8 weeks down the line which only explored the lower part of my colon showing severe inflamation and ulcers meaning I was diagnosed with ulcerative colitis. I started predisolone had awful side effects I continued to suffer they also tried salofalk, asacol, so many enemas however nothing would relieve me.

Feb 2013 I had my 2nd sigmoidoscopy showing that I was still in a flare then I was prescribed azathioprine. By the summer 2013 my symptons were calmer however something was still not right. Day to day was a struggle tummy cramps were still daily however my stools would be varied one day diarrhoea the next I almost felt blocked. I still visited my specialist monthly and have been prescribed so may 5 Asa's nothing was making thins easier.

December 2014 I had an MRI focusing only on my colon and I have continued to struggle and just accept that this is how things are. Then October 2014 I became really unwell high temperature extremely sore throat sickness... Intitially went to A&E to be sent home 2 days later I was admitted inflammatory markers were nearly 300 with a temperature around 40.  I had a bacterial infectioni felt so ill with my tummy it looked as though I was 6 months pregnant stool frequency increased to 15 times a day and I was being sick. I saw specialists in hospital one I had previous experience with a lovely specialist who actually performed a sigmoidoscopy intitially on me and recalled me being close to surgery which I had not been told about before. He questioned my diagnosis and asked me to ensure I forced them to do an MRI on my small Bowell to check for chrons whilst in hospital I had another camera only checking distal colitis this showed no ulcers... I was so happy but confused why was I still bleeding and suffering from abdominal pains and sickness. My new specialist strongly suggested I had ibs but me and my partner pushed for an MRI I had this the beginning of December. Results came back 4 days ago I have inflammation in my terminal ileum and transverse colon meaning it's chrons - I am so upset that this has only recently been found. I have been suffering for over 2 years and they had never checked my small Bowell. Now I am feeling even worse than normal tummy again so swollen hurts to touch full of gas being sick struggling to eat... I am now changing my research from UC to chrons. 

I would love to hear from people with similar stories. Also any information in regards to if any damage could have been done to my small Bowell and where people would go from here?

Sorry for going on a lot smile it has been a crazy roller coaster which I am sure a lot of you have also been through!

 

0 likes, 3 replies

3 Replies

  • kim46236
    kim46236 CC2015

    Posted

    oh dear cc2015 i truly feel for you it sounds so familiar, i am so glad it seems although you have now found the right diagnoise, i have been suffering for many years of constant trips to the loo, 15/20 times aday with diahorria , and suffer stomach cramps, last year it became obviouse that after many years of thinking it was ibs, i had a bad few months, and was alarmed when the tiolet was filled with blood, which promtited me to go to the doc, they then put me on two weeks window to be infestigated. They then after endoscospy , mri scan, found i have chronns of the terminal ilieum, firstly it is a horriable illness with , and many people suffer on a daily bases, which it sounds although you have, i have been over the last year put on strerods, which calmed things down, but when reduced the chrons flared up again.

    I took azathipan but had a severe reaction with my crp going up to 130, this drug caused vomitting, rash, and being in bed for days, but not all people have a reaction.

    The last 9 weeks i have been on methotraxte injection, and take folic acid three days after the injection, my symptons are now in remission, i can shop without fear of needing a loo dash, eat most things, and only go to the tiolet three times aday, i have another 6 injections to go and then we are going to take tablet form, sometimes it seems that this condition is devasting , and often leaves suffering and low self esteem, i really did not enjoy going out and being sociable, my main concern was where is the tiolet...... hopefully now you can get the right medication and get on with life.

    • CC2015
      CC2015 kim46236

      Posted

      Hello Kim

      Lovely to hear your story too. I was originally told at the age of 17 it was IBS too however over the years my symptons got worse I am now 26. 

      How have you found the injections? At the moment i feel like my current medication Azathioprine has done a great job at lowering my toilet trips however my side effects are still being sick and awful stomach cramps mainly lower right side at the moment.I have had a few scary moments high liver enzymes low iron etc and the serious infection in October however i think that all beats going to the toilet 20 times a day. The hospital have written to say i need another colonoscopy to take biopsies i really hope they can look at your type of meds to put me in remission.

      I am so glad you have found something that works and eventually got your diagnosis. It can only get better from this point! smile

      Charlotte

  • kim46236
    kim46236 CC2015

    Posted

    hi charlotte thanks for your reply, at the moment the injections seem to be holding everything at bay, i have a amazing immune system, which is great if you havent got chornns , my white blood count is 9.7 , 10 being the highest, so bringing my immune system down has been the battle., the injections seem too be softer option, although the side effects are similiar too aziothipane (sorry cant spell),  but maybe a little more controlling, i have some days when i feel really sick, and very exhausted.

    I think the main thing with all the treatments, is finding what suits you, as this illness is not something that you treat and it goes away, so we can only hope to find a solution that we can live with, and hopefully keep the illness in remission. hope they sort you out soon....rolleyes

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