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Ulcerative Colitis
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Posted 3/13/2010 3:59 AM (GMT 0)
Hi,

 

I have a really hard time believing that I'm still in my 20's & am SO SICK! I was recently diagnosed with UC in December, 2009. My flare-up was so bad that I was in the hospital for 4 days over New Years. I was on Prednisone (& Asacol) since my hospitalization & was feeling great after a few weeks! I was being tapered down in dosage when about 4 weeks ago - my symptoms came back. Now, I'm back on a higher dose of Prednisone than I was originally. After my 2 colonoscopy in 3 months - my doctor is saying that the next step is Remicade.

 

I did try the enemas (but did it half-heartedly) & when I was feeling fine - I missed the occassional dose of my Asacol. So, I'm thinking that maybe if I just gave it a little more time concentrating on taking these medications as I should consistently - that may be all my body needs?!

 

I'm very much against the thought of being on Remicade. I just feel that I'm being rushed into it when there HAS to be other options I haven't explored?!  

 

Am I just in denial?

 

- Phyre72

Posted 3/13/2010 4:05 AM (GMT 0)
My doctor is trying Imuran (kind of the same thing as 6mp) before we go to remicade. I can't attest to the results yet because I'm still on pred and a low dose of Imuran and it takes several months to see if it will work but I am mentioning it because my doctor feels that immuno suppressants are worth trying before the biologics. Out of curiousity why did he do another colonoscopy? I had one a couple of weeks ago and pretty much vowed I'd never have another during a flare because it really irritated things!
Posted 3/13/2010 4:18 AM (GMT 0)
So, 6mp is another drug like Prednisone, or is it classified as something different?

I had another colonoscopy because I think he wanted to see how much my condition & flare-up had changed since my first in December. The day afterwards - I felt really good with barely any symptoms. However, the last couple of days have been EXCRUCIATING with my stomach pains being a LOT more sharp. However, this evening - I'm feeling pretty darn good again with 1 minor trip to the bathroom in the morning & only 3 this evening with minor stomach aches preceeding.

That's why I'm so frustrated - it just seems that if I can just figure out what it is that I'm doing right on the days that I'm feeling better - I can kick this!
Posted 3/13/2010 4:19 AM (GMT 0)
You really need to be more diligent about the asacol and enemas. I have re-flared several times when tapering from prednisone. Your doctor could at least try switching you to Lialda. I was on asacol but now am on the max. of Lialda (4 per day). It is just a different delivery system of mesalamine. My doctor says it releases as a paste that coats the colon. Do the enemas every night until your symptoms are under control, then taper. I had 3 remicade infusions a year ago when I was not responding to 40 mg of prednisone after about 8 weeks without even being able to taper, just getting worse (20 trips a day to the bathroom with mainly blood). I have flared since and got it under control without the remicade; it took about 6 months. I would hold off and being more careful about your meds. You can not stop the asacol (or Lialda) or miss doses. I set the next days out the night before so I see them.
Posted 3/13/2010 4:29 AM (GMT 0)
Thanks, Beeswax... I've been VERY diligent about the Asacol over the last couple of weeks. Plus, I think it takes about 3 weeks for the Asacol to be completely effective, so I'm should just be about hitting that time fram now. (Another reason I think Remicade may be premature.) I just re-started the enemas last night (I get my symptoms in the morning & late evening so doing it then would be useless. I'd do it during the day but have 2 kids under 3, & that's not feasible.) SOOOoooo... I'm setting my alarm in the middle of the night & do them then.

Thanks for your input!
Posted 3/13/2010 4:35 AM (GMT 0)
Do the homework and realise what it is that you want for the rest of your life....

My goal is to never be on pred or any of the immunomodulatiors or the biologics. 21 years later, the goal is still successful.

I don't believe that the immuno meds will be a positive for one's lifetime.

If you can, put your efforts into the 5ASA oral/rectal meds.....yes, they're a pita, but really worth it if you can use them.

Use probiotics.

Is your UC throughout your colon or limited?

You seem to "know" what's going on.....since there's no cure, best to find something that can keep you going for a long time with treatment and maintenance....

Depends on what you expect. I may be "old school"...but I'm grateful my doc's thought process was for me to use the least side effect medication with the longest term gain. Still working. Is my colon perfect? I still flare, but otherwise it's clear (which 5ASA meds help cancer-wise)
Welcome to the forum.

quincy
Posted 3/13/2010 4:42 AM (GMT 0)
My symptoms have always been worse at night and in the morning too. My body has been generally good to me when I am at work. I always do the enemas at night, and have only done them at night. I am currently not using them. They really help even though they are annoying and a pain in the a**. They treat the most troublesome and problematic area which causes some of the most disturbing symptoms. Plus the Asacol, or Liada, does not always reach to that area. You will also find that the longer you have UC and the more flares you deal with, the more you tolerate and put up with. There are many on here that have been dealing with this longer then myself and have more experience. It is great you found this forum as there is a lot of useful information and suggestions about supplemental approaches to diet, etc. I hope you continue to improve!
Posted 3/13/2010 4:43 AM (GMT 0)

beeswax said...

You will also find that the longer you have UC and the more flares you deal with, the more you tolerate and put up with.


Which is a very true statement that I try to help others realise. It's NOT a good process in dealing with symptoms. Actually, it should be the other way around....hence my constant insistence of UCers using rectal meds for treatment and taper to maintenance.

Plus....dealing with flares going back to nightly enemas at the very first sign of symptoms.

q
Posted 3/13/2010 4:51 AM (GMT 0)
Do you agree with me Quincy? Another thing I have found is that the more knowledgeable you are, the more choices and options you find to try to get your flares under control, the more in control you feel of your own body and health. This forum has given me that. I feel like it has enabled me to be a partner in my own health, rather then at the mercy of what doctors say. I think that is essential with UC because it can make you feel like you have no control of one of your most basic bodily functions. It is really important to take control as best you can, though not always easy.
Posted 3/13/2010 4:56 AM (GMT 0)
You are right Quincy. It is also important to recognize when you need help and when you have lost control. Sometimes I have thought I could wish a flare away and it can be difficult to know when to call the doctor. It is always better deal with symptoms early on, before things get worse or out of control. It is all a difficult balance.
Posted 3/13/2010 5:01 AM (GMT 0)
I might be misunderstanding you, so we'll figure out whether I do or not with that one statement.

Absolutely knowledge and experience are the best things for our understanding of UC and how it affects us individually. Being proactive is a huge thing, however, I've found we all sit at different positions.

My tolerance level for suffering is minimal, but I do have tools in order to deal (from day one). The logic is solid, but I'm willing to do the meds. I don't have side effects and doing the enema nightly...I still grumble, lol.

There are a few who hold off till symptoms get to a point of being more obvious...is that the tolerance level? It should get less and less with the experience to not wait till, let's say, one starts bleeding and consider that the first symptom when treatment should resume.

I'm patient with the treatment, not the symptoms of a flare. To me, then the treatment will take less time.

Am I on your page? or another one? I probably need clarification...lol.

What do you think?

q
Posted 3/13/2010 2:59 PM (GMT 0)
Quincy I think we agree. When I wrote my question I had just made a post and then your post just had me quoted in a box, with no response. I was confused. Then a few minutes later your response was included. I think it was the timing of how and when the post go through. Confusing. Anyway, I went to bed and just read you last post. I never know what time it is for other people.
Posted 3/13/2010 4:05 PM (GMT 0)
Quincy and Beeswax have a good point. It IS worth trying to get your flare under control with the 5ASA's first. I was on Asacol and Cort enemas for 4 weeks before I went to prednisone and I probably would have tried those treatments longer if I hadn't taken a serious turn for the worse at the end of those 4 weeks. So, if you not feeling great but doing OK (functioning, etc) I'd give it a few more weeks, myself. However, you are the one who has to decide how much you can take.
Posted 3/13/2010 5:22 PM (GMT 0)
A serious turn for the worst means more intervention is needed. I've never been in the situation where things worsened except when I was initially seen by my GI and first put on the Asacol. The doc waited for the enemas until after my c-scope once I was actually diagnosed.

I improved somewhat, but once I started the enemas I didn't seem any worse. It took a while for them to totally kick in and I successfully was off them a few times, only to realise it was better to stay at a maintenence and intervene earlier.

One good thing, we have many options regarding meds, but that doesn't mean they will all work for everyone.

quincy
Posted 3/13/2010 5:24 PM (GMT 0)
beeswax....yeah, the quote process. I click on the quote, post it and then edit it immediately afterward, because otherwise I can't click underneath it to respond.

Great we're on the same page....I confuse myself lots of times with my own statements..lol!

q
Posted 3/13/2010 5:46 PM (GMT 0)
Phyre, try to step up the enemas. I had a hard time with the mesalamine enema but the cortifoam was much easier to insert. One thing I noticed was missing from your meds was a good probiotic. Those aren't going to cure you but they are a staple and probably help a lot over the long run. My problem is that I fall asleep sometimes before doing the enema but when I do them, I feel a lot better. I've been a bit puny lately myself and think I am going to give them another try. I have lower left sided colitis with a positive blood test for crohn's but the docs have not diagnosed me with crohns, just colitis. Whatever!!! Good luck to you. You will find a lot of help here on the forums. Don't let yourself get too sick though. Do what you have to do to get well.
Posted 3/13/2010 5:59 PM (GMT 0)
What exactly are probiotics? Are they what's found in yogurt? Excuse my lack of knowledge - I'm still getting used to the terminology.

I am taking several suppliments at night: Vit D, Oscal, Multi-vitamin... Is that what you mean?
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