thought i was on the mend... wrong!

well,

as you all probably know by now (since ive been writing about it in posts for weeks) i was starting to feel great after my 7 day stay in the hospital in the middle of october.  after my colonoscopy that showed i had severe left sided colitis to the splenic flexure.   which is better than the last colonoscopy which showed that my entire colon was severely flared.

so that at least was good news.

well, i started to feel great about 2 days after the hospital.  on 50mg of prednisone (which has given me like tons of side effects which are quite unpleasant, but worth it to get rid of UC symptoms)..

for a few weeks i was  having quite normal bm's.  pretty well formed, no blood, only went once a day.  great news right?

well, now, the last few days, im going about 6-8 times a day again (maybe even more actually) and there is lots of blood.

and lots of pain.

im talking moaning and groaning, not gonna make out alive kinda pain.  the kind that doesnt let up and just goes and goes and gives ya the sweats and sometimes makes you puke.

how can this keep happening to me?

i go thru these little 2-4 weeks spurts of doing so good and thinking im on the mend and them BAM, it all comes back again.

been over a bloody year now! (excuse the pun)

but, i still have a normal bm once a day (and let me tell ya, the toilet is FULL of poo. formed poo. the kind where my colon is like "what are you doing to me?")   which seems to me to be a sign of healing, since UC severity is determined by the Diarrhea and blood (and of course the state of the colon)  oh, and i also had dry farts!  LOL

so i dont know what is happening here.

is the blood and bits (tissue/lining) coming out because the poo's tore up my colon on its way out?

or is my flare back (maybe never went away)?

the blood is bright red as well as dark.  and the toilet looks like kool-aid when im done.

lots of gas and now no more dry farts  ...

i thought the pred was working miracles, but now it seems like im taking it for nothing.  next monday i start to taper by 10mg every 5 days.  can't wait to see what thats gonna do to me?

so... any advice or thoughts on the matter?

omg! thank you!

thats what i am hoping! its good to hear it from someone else that has experience with this.

i was starting to get down in the dumps from thinking that it was all going pear shaped! i dont want it to come back.

sometimes its really hard to stay positive when you dont really know what the heck is going on inside yourself.

oh, and yes, i take my meslazine every morning and night as well.

the cortifoam.. well, im a bad girl and dont use it every night, cuz the last 4 nights or so have been really bad with me on the toilet before bed. i go like 3 - 5 times at least before bed and there is lots of pain. and i sit there for at least 30 minutes each time.
i just cant bring myself to go there and put something up me bum after that.. my anus feels so traumatized as it is.

i guess i just need to bite the bullet and do it. even if i have to go to the bathroom 15 minutes later and expel it.
will it even matter if i do it or not in that case?

I feel like I know you a bit better after seeing your myspace page.

Here's the problem with prednisone steroid enemas. If you're on them for any long length of time you become steroid dependant. That means your HPA has been shut down and your steroid receptors have shut down as well. Unfortunately the medical establishement doesn't doll out cushings syndrome drugs for people with UC. They just let you wean off steroids and if you flare up again they use 6mp or imuran because it upregulates the steroid receptors again as well as lowering the immune system. Neat trick. I noticed you haven't tried these yet. I suspect if you can't get out of your flare after tapering down your prednisone, then 6mp or imuran should be your next step. Also since you have insurance you should be taking mesalamine enemas. If you go to the bathroom 30 minutes later so what. Use another one. I think it says the meds need about 3 hours of topical time to be at peak efficacy. Need to verify that but the idea that most of your inflammation is left sided gives you hope that mesalamine enemas can reach this. I'm very surprised you haven't been told this by your doctor.

And since you have been flaring for so long your mucus producing cells that line the colon have been destroyed now and thus you are also suffering from a lack of properly produced mucus that is of the correct viscosity to keep the bacteria from attacking the lining of the colon. Even non pathogenic bacteria will agravate the immune system if you have no mucus barrier left to keep them at bay. What I do is use liquid phosphatidylcholine enemas. They work quite well for me. Another rectal med you should be using is xylocaine enemas. Yep it will numb your but and is a very powerful anti inflammatory. No excuse not to be using everything at your disposal.

Also start to incorporate some bulk forming fiber into your diet. Psyllium husk will work. Resistant starches are a huge part of my diet because of the anti inflammatory butyrate it produces. I eat beans, plain corn flakes, chickpeas, inulin, slighty green plantain bananas, lentils, hi maize corn starch and cold rice for this reason. If you increase your WHITE foods (rice, potoatoes, calcium carbonate) you'll see your bowels will slow down so you won't be going so much. Start very slow as fiber will cause gas. But since we know we all have lots of gas from having this disease, what's a little more? Eventually it will settle down. This good fiber will also increase the good kind of bacteria and crowd out the bad kind.

It takes awhile once you get the right things going for you for the colon to heal and start functioning properly but it will behave once you feed it right.

Post Edited (Horus) : 11/27/2007 1:07:37 PM (GMT-7)

Steph,

I don't use the xylocain enemas nor do I use the mesalamine enemas currently since I'm not flaring. I get away with canasa and 2 asacol tabs a day. If I were in a flare I'd certainly take xylocain enemas and mesalamine enemas as I have used them in the past and they are very effective and work quickly for me. I have been on prednisone before but had such a bad reaction to it I can't take it anymore. I can only use budesonide suppositories as my steroid of choice if I were to need it because of a relenting flare. I'm stable now. My routine is to use the phosphatidylcholine enemas right after I go to the bathroom. I go once a day. First I use the phosphatidylcholine enema, then I use a canasa suppository then swallow an asacol tablet, then I take an asacol tablet before bed. I see you take asacol yet you say you get symptoms from the enemas. Is it just the volume of liquid or are you saying you are intolerant to mesalamine? It's tough to take an enema unless you first go to the bathroom however if you can only use half and you have insurance then big deal. I know those enemas are like 10 bucks a piece or so.

In your case I'd start out with in the morning with a xylocain enema then wait for it to numb you up then if you can't tolerate the mesalamine enema then try canasa supposository that has mesalamine in it. However it won't reach up the left side and is mainly for proctitus. You could use the suppositories for awhile till the rectum is feeling better then switch to the mesalamine enemas that reach up higher into the sigmoid.

Later when you stop the xylocain enema you can switch to the phosphatidylcholine enemas. However key to your healing will be incorporating foods that will produce butyrate in your colon. Yes that means that you'll have to tolerate foods that will give you more gas but that is the price you pay. You can start out super slow. Something is better than nothing.

Your myspace page is refreshingly brutally honest.

Post Edited (Horus) : 11/27/2007 11:55:37 PM (GMT-7)