My story as it stands to date!

[B.B.J.]

Hi there!

I was diagnosed with Ulcerative Colitis back in Nov 2006 and immediately underwent treatment with all forms of mesalazine preparations which after about six months worked. I was then faced to make the decision whether I wanted to be on some form of maintenance medications to keep it all at bay but after having a reaction to the Asacol (mesalazine) tablets I decided to let my body take care of itself which i can say did me proud for around eight months medication free. Now here we are......in Nov 2007 I began to show symptoms again, mouth ulcers, blood loss and diarrhoea etc. After weeks of failed treatment of enemas, suppositories and Budesonide steroids I was taken into hospital after an investigation revealed that my colitis had spread the full length of my colon. I was put straight on a Prednisolone IV and discharged on an eight week reducing course. During this i must admit i felt great, an inner calmness that was much needed! However, this was not a cure and my colitis came back within weeks.

They decided to try me on a further six week pred course. Again this masked my condition but did not solve the problem. During this course they started me on Aziathorpine 100mg but once i finished my steroids the side effects of these tablets became very obvious with me being extremely sick for days on end. They changed me over to Mercaptopurine, starting on 50mg, to 75mg and now 100mg which i have remained on ever since. Once i completed the pred course I remained stable for around a month but began to deteriorate again. Now its Aug 2008 and im still suffering, severe stomach cramps, blood loss, skin issues, weight loss, tiredness and as they so call it an on and off giant 'moon-face'. After trying Budesonide tablets again, I suffered a constant feeling of being sick, reduced appetite, mouth ulcers returned, and blood loss. They have now swapped me onto an eight week pred course again.

I am awaiting a colonoscopy as my consultant believes I could be in between ulcerative colitis and crohns as no medication seems to be working. He believes that surgery could now be on the cards. I am now in a situation where i don't know what the best decision could be, but i know i just want to resume to some form of normality. This is no life for anyone to deal with. I have been on a low residue diet throughout and even tried Aloe Vera tablets and liquid but am still as bad as i ever was.
Does anyone else have any ideas?!

 

[Guest]

hi BBJ, welcome to the forum.

i'm so sorry to hear of your ongoing troubles, you must be well fed up by now

i do know that Crohns & Colitis can present in similar ways, and i guess the only sure way to diagnose one from the other would be a biopsy, which may well be done during your forthcoming colonoscopy procedure.

i'm not sure that Colitis brings skin issues though, so to me it sounds more Crohns-like than anything, but i could be wrong.

i'd try & take it one step at a time mentally - let them make an informed decision once they have the colonoscopy results, and take it from there. if surgery does seem to be the only option to you getting your life back, then it is a positive step for you. but it may well be that, once they have identified what's going on, they may suggest an alternative form of medication for you. just hang on in there, and put your trust in the medical professionals... and for support & understanding, you have us.

keep us posted how you get on.

 

[Mazen]

Maybe you should ask your GI about Remicade or Humira before considering surgery. Also check the threads about LDN in the treatment section.... Good Luck and hope you get better soon

 

[B.B.J.]

Thanks dingbat and mazen for your rapid replies, must say was curious to what this forum business was all about but I have read a lot of useful information so far which is a big help. To be honest im not so keen on the Remicade or Humira preparations basically due to the cytotoxic medications being injected...or methotrexate as well.....but they have not been mentioned in my care plan as yet. I reckon I'll have a much better idea of where I stand once the doctors have decided whether i have colitis or crohns to get me on the right track, try and defer surgery as long as possible! Hope your both keeping well yourselfs

 

[Sojourn]

That will make a big difference as to whether it is UC or CD. If you have UC, usually surgery will remove the affected area and that will be it. With CD, it usually comes back after surgery.

There are things in a lot of medicines we don't like. However, when you have a chronic disease, you sometimes have to take some risks to be well.