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Ulcerative Colitis
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Posted 7/10/2015 6:33 AM (GMT 0)
Hey guys I was admitted to hospital following a severe outbreak of colitis. Prior to being admitted I was taking prednisolone 40MG a week (reducing by 5MG a week) that had no effect. I have now been on an IV steroid for 3 days (today now being my final day) with no improvement. Yesterday I had another scope which showed the colitis is still severe. I am having around 12-15 BM per day and throughout the night. Stomach cramps, loose stools with blood included.

As I have had such little response to the treatments given the doctor today wants to start on infliximab (remicade)

What are peoples thoughts about this treatment?

If im honest I will probably go for it as I don't really have much options left.

Any advise would be great, any questions please feel free to ask
Posted 7/10/2015 7:28 AM (GMT 0)
Yup agree with the remicade as the steroids are not working and the inflammation is severe you don't have time for other meds and rectal medicines won't be useful with so many BMs
I would advise taking imuran so that you don't build antibodies to remicade and it helps the UC itself although it takes several weeks to months to build up to therapeutic levels in the body
Studies show that a combination of imuran ( or 6mp...) and remicade is more affective than either of the two medicines alone
Once the number of BMs start to reduce I would try cortifoam to help bring down the inflamation
I was in a similar situation a couple weeks ago and thank G-d the remicade worked and I was able to be discharged just a few days later
Good luck
Posted 7/10/2015 7:33 AM (GMT 0)
Thanks for the quick reply dikid - Good to know someone has achieved remission with the infliximab. Did you notice any sides from the infusion? Will ask the Dr about the other meds you mentioned see what he says.

Thanks again
Posted 7/10/2015 7:40 AM (GMT 0)
I didn't achieve remission yet but I'm miles from where I was and doing so much better than I could have imagined
I was premeditated with Tylenol and Benadryl for the first two
They were both administers in the hospital
I was so sick when I got my first infusion I wouldn't have noticed anything ( according to my family I was hallucinating before I had the first infusion)
I was also pretty sick by my second and slept straight through it
By the third I was awake and they gave me hydrocortisone as a premedication in case of allergic reactions

I'm not sure if you have ulcers in your throat but the remicade didn't fix that right away
Posted 7/10/2015 11:17 AM (GMT 0)
Infliximab (remicade), put my uc into remission, and took care of my steroid dependency. No side effects from it after nearly 2 years of use. If you receive an antihistamine (benadryl or claritin) and Tylenol before the infusion then injection site reaction is rare (otherwide it could be a headache or raised heart rate).
Posted 7/10/2015 12:13 PM (GMT 0)
Remicade is the only medicine that has put me in remission. I wasn't premedicated when I started and had an allergic reaction after my 3rd infusion (made my hands swell into painful claws), but now I premed with Solumedrol and Benedryl. Haven't had a reaction since. Sometimes tho, I will get some mild stomach pains and slight nausea but it goes away quickly.
Posted 7/10/2015 12:38 PM (GMT 0)
I'm so sorry to hear of your severe issues. I hope that you feel much better very soon.
Posted 7/10/2015 1:48 PM (GMT 0)
Leeo- Sorry you are having a rough time. I am thinking good thoughts that the remicade will help you feel better and heal.
Posted 7/10/2015 2:04 PM (GMT 0)
Leeo- You never want to have to make decisions when you are in the hospital. I know...it makes you feel like you have a gun to your head. I was in the same situation as you - admitted to the hospital a month ago and my doctors recommended remicade. I wasn't ready to take that leap yet. Tried more pred. My colitis only got worse.

Now on my second infusion of remicade. I should have started in A LOT sooner. I am not in complete remission but after a 4 month flare, I am finally seeing reduction in symptoms. No side effects yet for me other than fatigue (but that could be the disease.) I did have a really dicey period 3 days before my second infusion. Just be aware that it does take some time. I was really impatient for it to work overnight.
Posted 7/10/2015 6:50 PM (GMT 0)
Same thing happened to me. Along with the Remicade, you should hydrocortisone enemas or any other type of rectal medication.
Posted 7/10/2015 10:39 PM (GMT 0)
how you doing? what was your final decision on what treatment route to take
Posted 7/10/2015 10:54 PM (GMT 0)
You probably have no other choice, so jump in and see how it goes, you haven't got anything to lose, you're already super sick and the other meds clearly aren't cutting it for you.
Posted 7/11/2015 10:11 AM (GMT 0)
Hey people thanks for the responses. Went ahead with the remicade and seems to of worked well. Had my first infusion at 1600 yesterday whilst watching the tennis. Feeling much better today only had 4 BM's compared to the 12+ on the previous day's. Still early days yet but would definitely advice one to try this if in need.

Any questions feel free to ask & I'll do my best to keep you guys updated.

Thanks for your help Leeo
Posted 7/12/2015 3:31 AM (GMT 0)
Wow that's great hope you continue to improve
Posted 7/12/2015 5:10 AM (GMT 0)
Dikid - BM's turned out about the same as previous days due to trouble in the night but definitely less pain when passing which is good. Hopefully improvements continue.

Does anybody else find themselves waking up and having to go to the toilet throughout the night around every 2/3 hours? If so how do they get around this or try prevent it?

Many thanks Leeo
Posted 7/12/2015 5:30 AM (GMT 0)
Bummer but I had that problem till recently and couldn't get around it but as the inflamation healed the constant BMs and urgency went away
It's possible you can use something like cortifoam but it may be to early depending on how many BMs you are having
If too many BMs you just lose the foam
Good luck
Posted 7/12/2015 7:37 AM (GMT 0)
Remicade should help, but don't expect immediate relief. It usually takes a few doses.
I also waited too long to begin it, and had a nine month flare that was way out of control.
I added Zofran to the premedications (Tylenol & Benadryl), and that helped with nausea that I had.
Watch for possible adverse reactions, although they are very rare.
Wishing you swift recovery!
Posted 7/12/2015 5:34 PM (GMT 0)
Leeo- I have fingers crossed for you! I hope the remicade kicks in soon. I had all night bathroom trips with my first flare. It only got better when I healed. Sorry you are not getting good rest! I would try napping when and if you can.
Posted 7/12/2015 10:05 PM (GMT 0)
I hope you get better soon. My heart goes out to you!
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