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Ulcerative Colitis Medications - how much is enough?


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Old 10-08-2014, 08:55 AM   #1
momzworkin
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Ulcerative Colitis Medications - how much is enough?

Hi-
21 year old female diagnosed with left side UC after 2 colonoscopies over a 6 month period.
I went from 3 to 4 capsules of Apriso daily, which isn't working, to now having just done my 4th Remicade treatment. I still have diarrhea all the time, and occasionally with blood in the stool.
I spoke to the Gastro who has said our next steps might be to increase the Apriso (I have one friend who takes 8 capsules daily!), or to try stopping the Apriso all together and seeing how I do.
I have tried to get my stress under control-I am a full time student that travels between two campuses and work about 30 hours a week, and even dumped a boyfriend becasue he added too much stress to my life, lol. I have found stress makes me flare up quite bad.
Is anyone else on Apriso? How much were you prescribed?

Thanks for anyone's experience and wisdom you can share. My Mom and I are about at our wits end trying to find a balance for my life that lets me heal and still lead a somewhat normal life.

Thanks!
Kelzworkin -daughter of who posted this for me, Momzworkin

 
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Old 10-11-2014, 11:03 AM   #2
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Re: Ulcerative Colitis Medications-how much is enough?

Hi...what exactly are your symptoms at this time, and have you had any improvement since you were diagnosed and put on meds?

Have you not been on any rectal meds? If not, request them first before changing the Apriso. I suggest starting with mesalamine retention enemas. Since you're in the US...that would include Rowasa and its generic form.

Were you put on Remi from the start?

Are you on any probiotics? Are you on any fibre supplements?

Sorry for all the questions
q
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Old 11-07-2014, 08:01 AM   #3
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Re: Ulcerative Colitis Medications-how much is enough?

Hi Quincy-sorry it has taken so long to get back to you. As far as medications, my daughter has been on Apriso from the start, but continued to have bleeding and diahrea. This went on for about 6 months. She is taking Phillips Colon Health as her probiotic. She eats a really healthy diet so she hasn't been asked to take fiber supplements yet. She has had 4 Remi treatments so far, and they have been helping so much that her gastro is considering taking her off the Apriso all together, but she will still have to have the Remi infusions. She is scheduled for a colonscopy right after the holidays so the doc can see what is going on in there.
My daughter was also advised to see a grief counselor. She was going to start therapy anyway, and this kind of counselor is helping her cope with the fact that at the ripe old age of 21 she is facing the rest of her life with this problem, barring someone coming up with a cure in her lifetime. It is a lot to soak up, and frankly I think she is kicking butt and taking names at this point. She is in school (junior year of college) full time, works about 30 hours a week, and does stuff with her friends. She was taking a bunch of difficult classes, which was ramping up the stress-which ramps up the UC-then her wise doc advised her to take at least one class that she would really enjoy, yet still get credit for it. She is back in choir now, and it brings her great joy.
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Old 11-09-2014, 12:36 PM   #4
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Re: Ulcerative Colitis Medications-how much is enough?

Hi, sounds as though your daughter is doing quite well at this point. it'll be a her decision to go off the apriso....there are other 5asa orals as well as rectals for her to utilise.

i wish her well.

I do suggest a better probiotic taken at bedtime and fibre supplements such as metamucil capsules to be taken with meals.

Counselling is a great idea for a variety of issues to help regain footing for life in general while dealing with UC.

thanks for the reply....take good care,
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Old 01-05-2015, 03:50 AM   #5
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Re: Ulcerative Colitis Medications-how much is enough?

Hi all. Miles down the track i know! Just wanted to check how your daughter is doing now? I too was diagnosed with uc in my early 20s. Personally mezasalazine has been my savoir. I take
2 x 1.2g tablets of mezavant daily and use the pentasa 1g suppositories 3-4 times a week and that has been great for day to day management. When i flare the suppositories are twice daily mezavant is 4 tabs daily and prednisolone is prescribed for a short period and it does the trick. My mother takes imuran and swears by it - she too has uc.

If your daughter is still going to the bathroom a significant amount more than 3 times daily, has she been to a dietician? Once i had my first uc flare under control, i had to then see a dietician because i was still going to the bathroom 5-10 times a day. She stripped back my diet and also arranged for me to have the fructose lactose breath test to determine why and alas it was ibs as well as uc (very common to have both) i now know what fodmaps to avoid to keep my bowels happy.

Hope the above helps in some way even though its a couple of months late! Happy new year

 
Old 01-05-2015, 06:51 AM   #6
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Re: Ulcerative Colitis Medications-how much is enough?

Her Gastro suggested Phillips Colon Health, but what better ones are out there? She isn't one to deviate from her doc's advise, but in this case she might consider it.
She did have one flare up over the holidays, but otherwise has really been doing well. They added Welbutrin to her regimen for depression, and it has REALLY helped the most.
New Year Blessings to everyone here!
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07/2006: A/P fusion L4-S1; DX DDD
09/2009: started PM
04/2011: Right rotator cuff tear
09/2011: re-tore shoulder in PT- lost 30% function in shoulder
06/2013: diagnosed with failure of L2-L3-L4

 
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suggi (01-19-2015)
Old 01-19-2015, 12:34 AM   #7
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Re: Ulcerative Colitis Medications - how much is enough?

Philips was suggested by my new Gastro also (old one retired) and I still found Culturelle to be better.

I take a probiotic from Custom Probiotics a few times a week in place of the Culturelle and that seems to work well as it has more cultures in it and 5 strains which include Bifadis for the large intestine as well as Lactobacillus for the small intestine.

Hope this helps.

 
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