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Ulcerative Colitis
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Posted 7/17/2012 7:35 PM (GMT 0)
Hi all,

I am a 28yr old male who was just disgnosed with UC a few month prior. the last yr has been hell dealing with and trying to understand everything that goes along with it. i have been to see a GI who did a coloscopy and biopsy and told me i had UC... gave me pills no info and sent me on my way. i was off work of 3 months to recoup and been back for about 4 wks when bam its started again. not really bad off the get but starting to get worse the more i try to fight it. Not sure what information im looking for but i cannot continue like this much longer and dont know what to try next. At the moment i am going to the bathroom 4-5 times daily, crampy mostly just when need BM, some bloody other not, food feels like going right through me and now i am waking up 2 -3 times in night and cramping ore often...

Any suggestions on what to take to slow this flare down so i can still work and stop all the deppression that is taking over...

____________________________________________________________________________________

Salofalk 500mg 8 pills daily - 3 morning (6:00), 2 (9:00), 2 (12:00), 3 before bed (~10:00).

nothing else other than kinda monitoring my diet.

HELP!!! :(

Posted 7/17/2012 7:40 PM (GMT 0)
Hi and welcome.

I think that you should call your GI and ask for a prescription for mesalamine enemas. I also encourage you to do a lot of reading, both on this forum and other sites so you can get a better understanding of what UC is, what the treatment options are, etc. I think that the CCFA has good info on this from a traditional-medicine standpoint.

Hang in there. I know 4-5 BMs a day seems like a lot, but it's actually not that bad when you realize how bad it can get. I was in the 15-20 range when I was flaring.
Posted 7/17/2012 7:53 PM (GMT 0)
I agree with Fruitgirl. You need to get on some enemas to stop this before you end up progressing to that 15-20 times a day.
Posted 7/17/2012 7:58 PM (GMT 0)
Sorry you're here but glad you found the site. This has been a lifesaver for me not least because it taught me that treating UC is collaborative. This is where you'll find out about different diets and alternative treatments, as well as more conventional methods.

It's a balancing act. Sometimes I can eat certain foods and sometimes I can't, sometimes one thing helps, sometimes another. Bananas were helping a lot for a while, now it looks like rice cereal settles me down and slows down my gut. But it varies and that's hard and takes a lot of energy & attention.

This site taught me about the importance of probiotics (I take two different ones -- renewlife critical care 80 billion, and florastor) and soluble & insoluble fiber (psyllium husk and psyllium seed powder).

And as others have said and will say: rectal meds. Cortisone enemas at night and cortisone suppositories in the morning. Both of those are a big big deal, and I had to ask my doctor for both. My GI is very open to my inquiries and that helps a lot.
Posted 7/17/2012 8:00 PM (GMT 0)
Thanks for replying so quickly!

 i have been addicted to this site since i found it and have been reading since!! there is so much on here its over whelming. i will definatly get the enemas, can you get them with out seeing the GI first since in already on the pill form?

i am soooo scared of getting back to the 10 15 times a day where i was before!! i also am stunned by the number of different meds everyone here seems to be taking and not sure where to start... dont want to strong of meds and am looking for alternatives!

Posted 7/17/2012 8:08 PM (GMT 0)
You have to have a prescription for the enemas. Your GI might be willing to send an RX into your pharmacy if you call. I'd try it, at least.

Don't be scared by all of the meds people are taking. You could very well get lucky like me (and quincy) and only have to use the mesalamine-based drugs. They are VERY SAFE for long-term use. I have still only had one flare (when I was diagnosed). However, I am VERY DILIGENT about taking my meds. I don't screw around. I don't miss doses. I think there's a good bit of luck involved, in that some people just don't respond well to mesalamine (or are allergic to it), but it's also critically important to take the meds regularly if you want them to work long-term.
Posted 7/17/2012 8:23 PM (GMT 0)
hi and welcome,
1st line of treatment - 5 sas's like asacol, mezavent, lialda, salofalk. suphalazine or mezalazine are their generic names. you can get suppositories and enemas aswel as the oral form.

2nd line - steroids- predisolone mainly. you can get suppositories and foam enemas aswel as the oral form. the normal starting dose for oral is 40mg and you taper down bt 5mg a week till your of them.

3rd line - immunosuppressants such as 6-mp

4th and last b4 surgery in meds anyway is biological therapy. remicade and humira.

The reason every1 is on different meds is because no 2 are the same. we all respond differently to medication and its all about trial and error.

Because UC starts at the rectum you should be treating it from both ends, so i advise you ask for an enema along with the salofalk.

It also depends on where you are in the world. Europe differs greatly from the US with brand names.

Oh and not everything is spelt correctly sorry but you'll get the jist.

Ju
Posted 7/17/2012 8:41 PM (GMT 0)
My experiences epitomize some of the worst that can happen to you. The good news is that even if you experience the worst that can happen with this disease, you can end up with a great life. The most important things I wish I knew at the beginning:
Make sure that you have a well-educated, open minded gi that does not force you to use office residents in his stead;
You are in charge of your body. If you have a negative reaction to a drug, do not keep trying it no matter what the doctor said;
Treat from both ends right away;
if you take an anti-anxiety drug with high doses of prednisone, you will not get 'roid rage and withdrawal is much easier;
Stay educated! Here is a website that will help you understand what each doctor tells you, http://www.med.upenn.edu/gastro/documents/ACGguidelinesforulcerativecolitis.pdf
The support and information I found in this forum helped me deal with each crisis as it happened. Check in often. We have a great group of people.
Posted 7/17/2012 10:55 PM (GMT 0)
DejaVu,

Welcome to the forum.

...dont want to strong of meds and am looking for alternatives!

I think it's a great option - alternatives.

The traditional meds didn't help me, and when my GI gave me a choice of either surgery or the biologics, I balked at both and found my own way.

For me, it was a combination of certain supplements, probiotics, diet modification, and LDN - low dose naltrexone which put me in remission.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Let me know how we can help you.

Posted 7/18/2012 2:34 AM (GMT 0)
Hi I am a new member also - and yes this site is wonderful!

I have Left sided UC and proctitus.  The Asacol is working great for me - normal BM, now I can't seem to get control over the rectum.  Have blood and mucus - started the rawasa enema's and they made me so much worse, of course I kept using them for 3 days just to make sure.  Called the GI and of course she took me off the Rowasa and started me on Hydrocortizone 100mg and the seem to help me right away - it's been 4 days and it feels like im peeing out my butt!!!  Mucus and a little blood.  Normal bm's though.

So NOW WHAT?!?!??? 

Anyone experience this?

IBS for 25 yrs. on pamelor 35mg, recently dignosed Left sided UC and proctitus Asacol 4 -400mg

3x's a day and nightly hydrocortizone 100mg day 5, multi vitiman.

Posted 7/18/2012 2:38 AM (GMT 0)
Peeka,
so what are you taking.
Hydrocortizone enemas is it. ru peeing out of your butt in the am and how often is it happening.
Could be the enema coming out again. or could be diarrhea.

JU
Posted 7/18/2012 10:47 AM (GMT 0)
Thanks Everyone!! Youre support is awesome, and great to talk to people who have/are going through this.

I will be going to my GI for the Enemas for sure. As of right now I just need to get the D to stop so everything can heal. It will probablly take a little while to see my GI... what about takin Immodium or Pepto? or is there something else i can try that will stop the D until i can get the enemas?
Posted 7/18/2012 4:25 PM (GMT 0)
Although I absolutely see the allure of Immodium, etc., I'm scared to mess with my digestion any more than it's already messed with. I will tell you, though, that the florastor slowed me down a lot when I first started taking it -- so that I only take 1 a day now instead of 2. Also, the soluble fiber helps create formed stool. And bananas & rice are binding. :-)
Posted 7/18/2012 9:50 PM (GMT 0)
Deja-vu: If you are not flaring too bad, a short course of massive probiotics, tapering to a maintenance/daily dose may be very helpful to you. In two published studies high doses of VSL#3 probiotic for 8 weeks gave many people remission and many more noticeable benefit. It can be expensive, but you might get some insurance coverage.
Posted 7/19/2012 10:34 AM (GMT 0)
Thanks Janey47 and DBwithUC.

with the VSL#3 can you just purchase it or is it perscription?
Posted 7/19/2012 11:25 AM (GMT 0)
 

VSL #3 is available without prescription, but is quite costly.

You can get your GI to write script for VSL #3DS (double strength), and it would be covered by a small copay, if you have decent insurance.

Get your doc to write the script for 3 sachets per day, this way on bad days you can do 4 per day, and on better days you can do 2 per day.

Posted 7/19/2012 12:20 PM (GMT 0)
perfect thanks :)
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