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Ulcerative Colitis
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Posted 9/20/2014 3:24 AM (GMT 0)
Is anyone in denial about how much meds or care they have to take to manage their UC? If I miss one night of enemas my rectum flips out (literally) and I have an urgent blow out that misses the toilet or messes my pants or I have painful BMs. That's just missing one night! I take the max on mesalamine orals and add a Canasa daily. The regiment works great, but I'm still in disbelief over how close I am to having flare ups, just one missed enema away. I think why can't I be like the lucky people on Healing Well who use two enemas a week and a low dose of mesalamines? grrrrrrr On the other hand, those rectals are really something, aren't they?
Posted 9/20/2014 3:37 AM (GMT 0)
I'm in the unlucky group that has to use rectals daily too. I've tried only using them a few times per week. Doesn't work for me.
Posted 9/20/2014 4:06 AM (GMT 0)
Hearing that I'm not the only one does me good.
Posted 9/20/2014 11:45 AM (GMT 0)
I'm in the same boat! I seem to be symptom free now so my confidence is up, I'll think "ill just skip the enema tonight". And the next day I'm back to full blown colitis pain and diarrhea! It's scared me into never skipping again, learned my lesson.
Posted 9/20/2014 12:01 PM (GMT 0)
I am also one rectal away from flair up. Must use them daily,so sick of it and this stupid disease.
Posted 9/20/2014 5:11 PM (GMT 0)
I would say I would be happy if I could get away with rectals and mesalamines. I think it's a blessing if you can get away without immunosuppressants etc. I can see that being frustrating but also that is really nice that they work too.
Posted 9/20/2014 9:56 PM (GMT 0)
Chrissysoul, sometimes I think throw out the truckload of mesalamines and go to immunosuppresives and be done with it. But they create their own issues. I just want to be in remission, but I'm not, I'm just controlling symptoms and doing it pretty well.
Posted 9/20/2014 10:17 PM (GMT 0)
I agree completely, but unfortunately my doctor wants me to reduce the mesalamine enemas and when I left his office the other day he only prescribed 14 days worth. I called back the next day and asked for 30 days worth because my insurance costs the same for 14 as the 30 so he changed the prescription.
I don't understand really, what is the harm in doing them nightly.
Posted 9/21/2014 12:24 AM (GMT 0)
Something seems wrong with your doctor, ceecee600. Why would he want to reduce if you need it? I have a concern that if I flare anyway, I'm already throwing everything I have at it, no where to go up.

I would like just one day where I can forget I have this disease but the enemas are constant reminders. Pills aren't the same thing.

Just feel like venting.
Posted 9/21/2014 2:03 PM (GMT 0)
Hi journey

2 thoughts from me:
1. If you are only one enema away from flaring you need to do something more to get deeper into "safe" territory. What to do? I can't say because I don't know every single thing (supplement, Rx med, whatever) you've tried so far.

2. I sometimes have the same feeling about my UC. No enemas needed any more although in the past they were used a lot and very beneficial. My symptoms respond to diet mod and there are days I think "I wish I didn't have to watch every-single-thing that goes into my mouth." One wrong thing and hello gut meltdown with 6-8 BM's, cramps, fatigue (after it's all over). No blood unless gluten eaten.

If I could choose between your situation and mine which would I pick? Lucky I can't because they are both difficult. But for you I'll re-state: keep looking for something that puts you farther into "safe". Don't settle for where you are now. If it doesn't hurt you give it a try (I know, you don't know if it's bad until afterwards). There are a lot of "alternative" protocols (I have a cabinet filled with losers and just a few winners).

Good luck.
Posted 9/21/2014 5:38 PM (GMT 0)
Imagardner, I'll really think about food adjustments. I think you are right about dairy. Also I don't think I drink enough water. Really hate water.
Posted 9/22/2014 12:40 AM (GMT 0)
See this is the thing, while I have no symptoms (and I'm doing Lialda 2 pills per day and suppositories every other night), I still have inflammation and if I still have inflammation at my next flex sig what will happen? Stronger meds? I would rather not but I also don't want that inflammation brewing with the possibility of it leading to cancer.

It all just stinks. It really does.
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