thought i was on the mend... wrong!

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kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/26/2007 5:33 PM (GMT -7)   
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  sad ...
 
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?
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 11/26/2007 6:15 PM (GMT -7)   
It means you're healing, although..not completely healed! Remember, the flare basically starts from the bottom up....heals from top down...the rectum is the last place to heal whether you're on rectal meds or not.

Are you still using the cortifoam? and on the 5ASA oral?

I say "hang tough"....you're on the way and are improving steadily from my perspective. I understand your frustration and have been there many times....

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/26/2007 6:33 PM (GMT -7)   
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?
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 11/27/2007 12:21 AM (GMT -7)   
If you can at least maintain it for a half hour, that'll be a plus....but you've gone from nightly then nothing...so, you've regressed a bit.

You're also on quite a low dosage of mesalazine....2000 mg daily isn't really a treatment dosage. Although you're on prednisone..maybe as you're tapering, you might discuss with your doc if you should up it.

Maybe you could also add rectal suppositories....mesalazine...during the day or whenever you can fit them in....

Your poor butt...hopefully, something will allow you to have some relief.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/27/2007 12:58 PM (GMT -7)   
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)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/27/2007 8:49 PM (GMT -7)   
wow, thanks for the advice!
(lol, myspace.. yeah, there i am for all to see - i love that pills graphic i made, i giggle everytime i see it.)

i have used the mesalamine enemas in the past... at beginning of flare last year. couldnt tolerate them. got all the side effects as well.

that is why the cortifoam instead.
havent used it enough to become dependent on it.
i will go ahead and start using it whether or not i feel like it. (i know, im a bad girl)

also will ask doctor about the xylocaine enemas. i would love a numb butt!!!!
gonna ask about mesalamine dosage as well... what is a proper dosage by the way???

from the pain i am feeling compared to the past, i think the colitis has healed a bit more and i feel most discomfort in the sigmoid colon and rectum when i go to the toilet. not so much on the descending colon anymore. so hopefully it is healing. it still hurts like hell tho!

all the enemas that your using... how do you do it?
1 here, 1 there, 1 before bed... all at the same time?
how can u do so many and keep them in?
are they a big amount of fluid? i can't keep any large amount of anything up there. the salofalk (mesalamine) enemas were way too much for me as well.
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/27/2007 11:48 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)

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