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Ulcerative Colitis
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Posted 5/8/2013 3:21 AM (GMT 0)
Okay, I'll try to make this as short as possible, but no promises!

I am a 20 year old female. I was diagnosed with left-sided colitis when I was 14. Right now I take Lialda (4.8 g) and Imuran (125 mg). When I first was diagnosed, I mostly just had mucous and severe diarrhea, no blood. Even when I was at my worst, I didn't see any blood. Now I am seeing blood almost every time I go. The amount varies, but it is always enough that it scares me.
I have taken Prednisone three times. My GI is worried about putting me on it again since this will be my second time in less than a year (last flare lasted from September - November). Anyway, now I am faced with a choice. She thinks that if I do enemas every night then the issue may clear itself up. But, I am a young college student and I don't really know if I want to do enemas every night. The other option is Remicade. The thought of an IV drug scares me, but if I can feel better and only have to do that once a month then it might be the better alternative.
I thought I would come here to ask for your advice because I've tried talking it over with my parents and they don't understand. They are confused why I would want to take an IV medication when I could just do an enema nightly. I am at the point where I am sick of having to worry about my disease. I am sick of having to do all of this stupid stuff and be in pain. (Sorry to complain...)
What I really want to know is - what would you all do if you were in my situation?
Posted 5/8/2013 3:29 AM (GMT 0)
I do enemas and Remicade.

Both are totally doable things.

If I could just do enemas, I would though. I don't have to take time off work to do them, and I get to be left alone for 30 minutes :-D
Posted 5/8/2013 4:16 AM (GMT 0)
i think most people, including myself, would do the enemas and pass on the remi - easy choice imo -
Posted 5/8/2013 8:31 AM (GMT 0)
i see where you're coming from about not wanting to do the enemas because of your age and situation. i'm only 21 and have had the exact same disease as you since i was 8

mesalazine supposetories are another thing you could try. they arent as good as the enemas but wolud still help abit and they arent uncomfortable at all compared to the enemas.

if you dont live at home i can see why u dont wanna do the enemas because once u do one u cant really get up until the next morning, well i cant anyway, some people are different im sure

annnnnnyyyyywayyyy... maybe try the enemas once every second night and do the supps on the other nights. also warming the enema up in warm water makes it much more tolerable
Posted 5/8/2013 9:57 AM (GMT 0)
I got the remi since pred wouldnt work. Also I didnt even know what an enema was until I came here. What a great GI eh?
Posted 5/8/2013 11:29 AM (GMT 0)
Gracie,

I'm sorry you're bleeding and are in pain.

I, too, would suggest you do the enemas - like Anthony suggested, maybe every other day? Save the big guns, like remicade, for when you no longer have a choice.

But there are other things you could try in the meantime, which might help some of your symptoms, they include:

- probiotics, are you on any?

- what are your vitamin d3 levels?

- slippery elm powder

- l-glutamine amino acid powder

- diet modification, as in gluten and dairy free

- LDN, low dose naltrexone

If you are interested in any of these things,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

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.

I hope you feel better and let us know how we can help you.

Posted 5/8/2013 12:23 PM (GMT 0)
I would def. do the enemas first. They are very safe although I can understand why you wouldn't want to do them. Just remember though,...it takes a little getting used to doing them, but once you get the hang of it, it is no big deal. Sorry you are struggling...I hate this dd.
B
Posted 5/8/2013 4:24 PM (GMT 0)
Gracie

What maintenance Rx meds are you taking orally? Prednisone is not a maintenance drug so don't count that.
If you are only using mesalamine enemas then you need to be taking something orally. And if you are already taking an oral Rx then you need to switch if it isn't working to something else.

Remicade is a very powerful immunosuppressant and many here, me included, would only use it as a last resort. Ask yourself if that's where you are--last resort?

It must be incredibly hard to balance college with managing your UC but honestly your health comes first, before friends, school, everything. Without your health you have very little.

Yes, I would do enemas every night rather than Remicade. But I still ask "What oral Rx pills are you taking". There are quite a few you could try before Remicade unless you've tried them all and Remicade is only what's left (or Humira).

I was at this point 3 years ago and did not want to go there (having failed with all other oral meds) so I tried diet mod. one last time. I was lucky that it started working for me, it doesn't for everyone.

Best wishes.
Posted 5/8/2013 5:40 PM (GMT 0)
Hi Gracie, I'm sorry that you're dealing with these symptoms. I have been dealing with UC since I was 14 as well (I'm 23 now). I only bleed when I'm at my worst and I have had severe side effects to any and every medication that my GI doctor has tried to put me on. (seriously, I had a near death experience last year). I have found Apple Cider Vinegar to be the only thing that gets rid of my UC symptoms when I have a flare-up. I mix 1 tablespoon in with a cup of hot water and drink it within 15 minutes. Since I am not able to take most medications, I've had to handle my UC naturally. I went gluten-free this past November, following a horrible flare-up, and haven't had any symptoms since! You didn't give any information about any diets you may be on, but I agree with InSoFla in that I would advise you to look into certain foods you eat as well. Good luck!
Posted 5/8/2013 6:02 PM (GMT 0)
what enemas did the doc prescribe?

I highly doubt that apple cider vinegar will be any help to you.

q
Posted 5/8/2013 6:02 PM (GMT 0)
I also vote for enemas over Remi. Remi can have complications and for the most part, enemas do not. Try them first. You can always do Remi later if that doesn't work.
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