I’m Jamie, I’m 17 and from Dublin, Ireland. I was diagnosed with Ulcerative Colitis in September of this year. I was also diagnosed with A-typical Autism the same month as UC, which makes it harder for me to cope with my condition (I have hypersensitivity, so I don’t like being touched or examined, and I have a huge phobia of needles, so routine bloods are not so routine with me!) HOWEVER! I’m not extremely disabled, as someone might imagine when they hear Autism being mentioned.
My Current Ulcerative Colitis Story:
This is my 3rd post here, I really need to find somewhere else to vent! lol
The last time I posted, things were sorta looking up, I had remission in sight and everything was starting to get well again, but unfortunately all good things come to an end!
About a week ago I changed medications from Pentasa (3 times daily medication) to Salofalk (a once a day medication), up to this point I’d been experiencing no symptoms of U.C apart from stomach pains and blood on the tissue (and sometimes in the bowl, but not a lot).
I seriously thought it was a miracle, but I was finding it hard to take pentasa 3 times a day and to try get my life back, I didn’t want to have to take medication in the middle of the city! I’d tried it a few times, but I felt it would be best to try a once daily medication instead.
The first day after taking Salofalk was a complete miracle!
I had absolutely no pains, no cramps, no symptoms at all! not even blood! and completely formed bowel movements!
The taste of the granules made me feel sick at first, but I decided I’d continue to take them, but the loss of symptoms was to be short lived :(
The next day I had absolutely no bm’s, but a lot of cramping and pains, I also developed a huge infection on my tooth and jaw (probably due to the prednisone)
I continued to have no bm’s for 4 days!, but I was starting to pass small amounts of mucus and blood so obviously something was wrong…
Eventually, I started to have bm’s again, but they were no longer formed and had blood in them, it sucks so much to think you’re finally well and then BOOM you’re back to square one.
Next step is Imuran, but I’ve decided I’m going to try the natural alternatives before I go on anything that will affect my immune system, I know that many people have had great success with products such as aloe elite and serovera, so i’m willing to give them a try!
I’m pretty damn scared of the effects that drugs like Imuran can have, I love going to huge social gatherings (like concerts and festivals) and pretty much always catch something after being to one, so if my immune system was further weakened, I’d be afraid I’d catch something much worse!
But things have not been ALL bad for me lately! I wanna point out that there is life after Ulcerative Colitis!
I’ve started taking my social life back, I went to the cinema with my friend and even bought popcorn! That would have been a serious no-no a few short months ago, I’ve also got plans for this weekend to go to a live Q+A with Phillip Defranco (sxephil from youtube) with a few friends from school (who I haven’t seen since April, when I had to drop out! but I’ll be going back in Early November!)
Also, I’ve started planning a trip for next year when I turn 18, I’ll be travelling around mainland Europe for 3 weeks! Colitis won’t get in the way, no matter how hard it tries, even if i’m poopin’ all the way down the streets of Rome!
My life at the moment is totally looking up, I know that I’ll beat this flare eventually and I’ll be able to do whatever I want, It’s just gonna take some time.
If anyone is currently taking aloe elite or serovera, i’d like to hear from you especially, if you could let me know how it worked for you!
Oh, and Adam, I’d like to see you put in a good word for them, seeing as though they have an advertisement spot on your website :P if you don’t think serovera will work though, i’d like to know before I waste a lot of money on it!
Current medications: Salofalk Granules 3000mg once daily, Caltrate (calcium + vitamin D) 600mg + 400U twice daily, Acidophilus 2 capsules once daily, Prednisone 10mg once daily (tapering 5mg a week from 40mg)
Past medications: Pentasa Granules 1000mg 3 times daily (worked well, but wasn’t convenient)