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Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/22/2008 12:42 PM (GMT -6)   
Well after using hydrocortizone suppositories Saturday and Sunday night I had 2 day's of relief from my hemroid bleeding which seems to have flared real bad in response to this colitis. The urgency I get right before my stool comes out was much better too. Last night I did not put in a suppository and of course today the blood was back and urgency.
 
Now I've only been on Asacol for 6 day's but I cannot understand how any medicine from those pills is going to reach the very last few inches of my colon and exit hole. I dont' see how it's gonna help. That is the only part of my colon that is inflammed (my exit hole itself and a few inches behind). So it would seem to me that I need direct application of something. But I know I can't continue using hydrocortizone suppositories either. Are there non-steriod was of directly applying a medication there that would provide long term relief?
 
I'm getting so frustrated. I dropped my only 2 classes which just started this semester because I can not sit in a class for 2 or 3 hours when I have to find a toilet every 10 minutes to pass mucus. I can't fart without mucus coming out and I've always been gassy in general so everytime I feel a fart I have to find a toilet. Not to mention you can hear the gurggling in my butt from the gas and mucus mixing. It sounds like a hungry stomach...only it's not :(
 
Again I don't mean to blow my situation up because my only inconveince is the constant passing of mucus and an urgency just before I pass my stool. But it's keeping me at home because I dont want to go out and have to use public restroom's or be at someones house where they can hear my farting in their bathroom with mucus blasting out of my ass!!!!
 
Ever since this colonoscopy my symptoms got worse and I gained a new symptom which is aching bones. :(

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/22/2008 1:01 PM (GMT -6)   
Hi Mad2, Rowasa is a mesalamine enema that may help you out. It is the same medication as asacol just in enema form. You can also ask about suppositories. I've dealt with school and UC and it is no fun. I dropped a lot of classes. Hang in there, you can do it. Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 1/22/2008 1:07 PM (GMT -6)   
Yup - I would recommend rectal meds as well - get the meds where you need them!

Ask your doc about Canasa (mesalamine suppositories) and Rowasa (mesalamine enemas).

For the aching bones, try Tylenol - no NSAIDs for IBDers. A heating pad is also helpful.

Hope this helps!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


SirJames
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/22/2008 2:28 PM (GMT -6)   
I know exactly what you mean! Currently, I am not in a flare-up, but still feel the effects of the UC, but not as severe. But, when I start to have a flare-up, I get exactly what you described! I don't even want to leave the house! Everyone has to fart, but sometimes you feel like to have to hold it in because you know that its not just gas that is going to go along with it. I don't know how many times I had to rush to the bathroom just to wipe my underwear because of passing gas. How many of you ever placed toilet paper in your underwear when you are out because you know that when you fart, it's better on the paper than on the underwear? (I'm raising my hand on this one) :o)

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 1/22/2008 2:39 PM (GMT -6)   
Ah sir james, as a girl i don't use tp but a sanitary pad placed at ther rear of the underwear. Works wonders and I just feel more confident.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 15 mg pred, down to 10 mg 1/11/08!
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08
Prontonix once daily for acid reflux, zofran twice daily for nausea


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 1/22/2008 2:42 PM (GMT -6)   
Mad2..
Do the 5ASA retention enemas with the oral asacol and use them (enemas) nightly for a few weeks at least...it takes a while for the 5ASA to kick in...but they could just become your very best friends..lol!
 
No, the asacol won't get to the butt....they're not meant to....but they will keep above the rectum/sigmoid nice and calm...you need both.

q



*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!


Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/22/2008 3:17 PM (GMT -6)   
quincy said...
Mad2..
Do the 5ASA retention enemas with the oral asacol and use them (enemas) nightly for a few weeks at least...it takes a while for the 5ASA to kick in...but they could just become your very best friends..lol!
 
No, the asacol won't get to the butt....they're not meant to....but they will keep above the rectum/sigmoid nice and calm...you need both.

q


Thanks everyone for the responses.
 
I'm trying to get my doctor to call me tonight so I can have him prescribe these enema's. My worry is that I'll always have to use them....I keep finding stories of people who have been in remission without the use of drug's and their condition was WAY worse then mine...but I don't know how much weight to put on those stories.
 
Why does this feel like the end of the world? My brother's best friend had a heart transplant at a young age and after many years of taking so many pills his kidney shut down on him and he recieved a kidney transplant just last year. And if you met the guy you would NEVER NEVER guess ANYTHING was wrong with him. He was THRILLED to get that kidney so he wouldn't have to do dialysis. He won't even mention any of his condition unless asked and he lives like anyone else.
 
I've got a little urgency and a ton of mucus coming out of my butt and I feel like my world just ended and I'm not even out of my 20's yet. I feel so horrible for complaining so much when I'm not even close to being as bad as other's I've read on here. I'm just SOOOO scared that this is gonna spread further up, and I'm SOOOOO scared that taking these med's for life (which could be 50 or 60 more years!!!) is gonna lead to kidney problems, liver problems...who know's what else!
 
Sorry guys :(

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/22/2008 6:27 PM (GMT -6)   
Hey Mad, the thing about when the bluebird of happiness has an accident on us is, we don't care that he had a bigger accident on someone else. At this point you're not expected to be worrying about how sick others are or how their feeling. Your job now is to worry about yourself and how you're going to deal medically and emotionally with this DD. You never need to apologize for complaining here. We're not here to judge or to see who's the sickest, just to support one another.

For almost all of us, no matter how mild or severe our disease is, the diagnosis is the worst thing that ever happened to us. So it takes time.
Judy
 UC Forum Moderator
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Mad2
New Member


Date Joined Jan 2008
Total Posts : 15
   Posted 1/22/2008 10:07 PM (GMT -6)   
Judilyn said...
Hey Mad, the thing about when the bluebird of happiness has an accident on us is, we don't care that he had a bigger accident on someone else. At this point you're not expected to be worrying about how sick others are or how their feeling. Your job now is to worry about yourself and how you're going to deal medically and emotionally with this DD. You never need to apologize for complaining here. We're not here to judge or to see who's the sickest, just to support one another.

For almost all of us, no matter how mild or severe our disease is, the diagnosis is the worst thing that ever happened to us. So it takes time.


Thank you so much for that response! It's amazing to see people come together and truly not judge.

I think I'm crossing the bridge to acceptence of this. I have been so caught up in the "why" and "how" of this and I can tell that if I continue with that I'm not going to end up any where positive.

I think what this comes down to is that even if this were to spread and get horribly bad I would be doing nothing for myself or anyone else by getting angry, staying bitter..etc. No matter what happens I have to stay positive somehow.

I'm just gonna have to find a way to accept that this can either stay the same or get worse. It's hard because I want a concrete answer. I want to here there is no chance this will spread. But that's not gonna happen. But I'am thankful that it's not bad right now. And I truly appreciate your guy's ears right now!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 1/22/2008 11:16 PM (GMT -6)   
We all go through it...it's a process...trying to skip from step one to totally accepting is near impossible, for steps 2 and 3 eventually hit.

The best thing you can do for yourself is to learn about UC, learn what meds you need to use and how to use them properly.

None of us think or believe at first we have to be on meds forever...my doc never stated I had to, and we did try to get me off them..
I was the one who stated I realised I'd be a med-lifer.

My doc's philosophy is to be on the least amount of meds for the longest period of time. It's paid off from my perspective.

Knowledge is power and experience is the best teacher (sad but true).
Remember as well, you don't have to be on meds you don't want to be on if you deem them inappropriate. I have refused pred from another doctor who stood in for my doc for one of my appointments....my doc never offered them to me.

Try not to compare yourself to others' suffering/illness...you'll never get to a point where you fit in. We all deal/accept/live with in different ways.

Hang tough...it'll make sense eventually.

quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~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 !!!

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