how in the world do you get over the last few symptoms

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landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/21/2008 7:23 PM (GMT -6)   
Oh the frustration.  Does anyone else feel they get so close to remission and then can't quite get there.  I have been having formed movements in the morning from 2 to 4.....the nagging thing I can't shake is the mucus/watery bombs midway throught the day again at 6 and then every night at 12-2 then with gas.  No blood....just that nagging full feeling in the rectum andthen the fluid....clear and sometimes cloudy.....and then sometimes after i eat the full feeling in the belly area......I have tried the cortenemas, proctofoam....fiber.....no fiber....colozal(makes me much worse), etc.....currently trying Boswelia as a hail mary....does this happen to others...feel so close but yet never get there?  this has been going on for a year.....it is so frustrating......is there any hope or am i going to be stuck like this or worse forever...anyone please share and maybe give me some hope!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2008 7:26 PM (GMT -6)   
Yes it is totally frustrating, I've had crohn's for 17 yrs with no full remission, this is the closest I've gotten but my pesky issues are still frequency (average 5/day, normal for me is one) and urgency, I don't have total bowel control, when I have to "go" there's no waiting, even though stool is formed it still makes it's way out without me being able to hold it back and it sucks!

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/21/2008 7:29 PM (GMT -6)   
do you think your urgency is due to the narrowing of your intestine?  when you get some days of remission does your urgency abate?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2008 7:32 PM (GMT -6)   
I don't have any narrowing, I think my urgency issues has a lot to do with the perianal crohn's skin tags just on the outside of my anus and that's likely why I also cannot hold it in like normal (the way I used to be able to). Unfortunately I haven't had a single day of remission since getting sick so I wouldn't know.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2008 7:35 PM (GMT -6)   
Hey, maybe you should go on cortifoam (if you're not already) to aid with your rectal issues?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/21/2008 7:40 PM (GMT -6)   
I am so sorry you have never reached remission.  I know i can get there with 20 mg of pred, but I am trying so hard to do it without.  I have been on remi for 7 months and it has helped alot....according to my last scope.....but I just cant shake the nagging symptoms......I wish you luck in your search for total health

landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/21/2008 7:43 PM (GMT -6)   
I tried proctofoam.....is the cortifoam stronger?  someone said it was......procotfoam does not so much...have trouble holding the enemas in all night due to the nightly gas around 2.....but is the cortifoam better than the proctofoam?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2008 8:33 PM (GMT -6)   
Off hand I cannot remember, they might even be the same, quincy will likely know...I've only had success with cortifoam so in my opinion it's better than any of the suppositories docs have tried me on...thanks for wishing me luck, I've had my fingers and toes crossed for so many yrs now but it hasn't helped...hopefully one day soon there will be a cure for us all...I know with the cortifoam I never had issues holding it in and I've always been gassier at bedtime too. Good luck!

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/21/2008 9:16 PM (GMT -6)   
What you describe, even the timing, is exactly what I experienced before I found out about my gluten intolerance...
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/21/2008 10:44 PM (GMT -6)   
Proctofoam only has 8 mg of steroid; hydrocortisone suppositories have 25 mg; cortifoam is (I think I'm remembering this correctly from their website) 80 mg of steroid. So cortifoam is 10 times stronger than proctofoam. Proctofoam did me no good; hydrocortisone suppositories are helping.

And yes, in the six months that I've been flaring I've had at least two times when I thought I was headed into remission, only to get hit with the mucus bombs and gas again. I'm hoping third time's the charm...

emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/21/2008 10:54 PM (GMT -6)   
Well, there you have it...no wonder cortifoam is the only rectal med that ever helps me.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 10/21/2008 11:13 PM (GMT -6)   
Sometimes dietary irritants can hinder a full remission. Have u had an allergy test lately? Some food allergies can develop as we get older. My love of whole milk was keeping me from getting into full remission a few years back and I found out that I was lactose intolerant. That was a sad day for ice cream... :(

Michelle8871
Regular Member


Date Joined Sep 2008
Total Posts : 90
   Posted 10/22/2008 6:17 AM (GMT -6)   
My Dr. prescribed hydrocortisone suppositories for hemorrhoids.....is there another benefit to hydrocortisone use in an enema???
Newly diagnosed August 2008
Currently on 15mg prednisone, 12 Asacol per day, Mesaline enema nightly,Multi vitamin, Omega 3 and Calcium
Realizing that disease is a real pain in the ass!
Mother of a 5 year old and 12 old trying to get through each day with a smile on my face!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/22/2008 9:10 AM (GMT -6)   
PB4 & Landcruiser- I am in the exact same place you 2 are in- tell me about the frustration! I have no idea where to turn- I found myself pondering a short course of pred last night, which I then realized was crazy. I don't know- I don't feel bad, I can't complain too much, but the urgency & the mucous & gas are enough to drive you crazy. It's been so bad that I've had an accident, even with only 4-5 totally formed bm's a day! I just have no control at all. And the gas is nearly always accompanied by mucous, so I have to use a sanitary pad 24/7. I am at wit's end- I think I'll talk to my GI about the hydrocortisone suppositories soon- I am so over enemas, but I think I could deal with a suppository. Aaarrgghhh... this is why I feel I will never be back to "normal"! I feel like this is as good as it'll get- which is a heckuva lot better than an actual flare, but still....

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/22/2008 10:36 AM (GMT -6)   
I'm in the same place, landcruiser. I barely have blood but my BM's are still unpredictable (sometimes there's urgency, sometimes most BM's are in the morning and than other times throughout the day, sometimes it's loose, etc.) and I still have mucos. I'm hoping that my 5th Remicade infusion along with rectal meds will finally send me into remission.

Does insurance cover allergy testing?
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/22/2008 10:45 AM (GMT -6)   
well I wish you luck, Comedy Dork- I've been getting high-dose Remicade infusions for close to 2 years now, & still no real remission. Not to be a buzzkill, but it's SO aggravating! skull   I don't think most insurers cover allergy tests- maybe if your PCP recommended them???
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/22/2008 10:52 AM (GMT -6)   
I'm sorry, Eva Lou. I can't believe you've put up w/ these symptoms while being on Remicade for this long. shakehead If I don't get into a full remission, I'm going to have my colon ripped out. I figured that if I'm on a big gun drug, then I should expect and be in a complete remission.

Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/22/2008 11:00 AM (GMT -6)   
I know, I feel the same way about these heavy duty drugs- I resist surgery because my quality of life isn't horrible right now, I can deal with these symptoms. Plus I plan to try Humira if the Remicade ever quits entirely. When I first started infusions I had no symptoms, none... then over time, they started to creep back in. But it's ok- like I said, I can live with it. For now! Thanks for the empathy!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/22/2008 11:53 AM (GMT -6)   
Eva your not crazy about the short course of Pred. My GI is actually going to give me hydrocortisone with a fast taper of pred for my next infusion.(next wed). He is thinking that since there may be some sort of antibody build up the hydrocortisone and pred might suppress them and let the remi take hold. I don't know...worth a try...I will let you know. I am like you. I don't feel bad, but the frustration is so annoying. The experts I have seen have said Humira will not work any better than the remi, but I am not sure. I am waiting for my antibody blood test to come back....maybe that will shed some light. As far as the allergy testing goes, I am definately better when I don't eat any gluten.....had pasta yesterday and the gass was unbeleivable last night....as I speak I had 3 formed movements today with no blood...a little mucus early with the gas but thats it.....maybe I will try to stay off of all gluten and see what happens....gosh i am a snacker big time and this will be tough but I am ready to try anything at this point.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/22/2008 1:40 PM (GMT -6)   
so you think maybe a short pred course would help? I wonder also about the pred dose- when really flaring, nothing under 60mgs/day will help- and at that dose, there is no such thing as a short course! With taper time you end up on the pred for 3-4 months! I haven't had the antibody test- there is definitely some amount of antibodies built up in my blood, but both my GI & myself agree that currently, the Remicade is helping enough to justify still being on it. What burns me about going on pred is this- I went on Remicade initially to try & get off the steroids, as I'd become dependent on them to keep myself in remission. If I go back on them, what does that say? Steroid dependency is definitely a good reason to pursue surgery- I hated my last pred course so much I swore I'd undergo surgery before going back on it. Each course I've been on has been less & less effective. That's why I'm thinking maybe the steroid suppositories, as opposed to a systemic steroid. Ugh...what a crappy choice! I'll be very anxious to hear about how the steroids help you with the infusion- when is your next one? Mine isn't for another 4 weeks. I can't honestly say that what I eat seems to have much effect- it's more the amount I eat. If I eat a lot, then I have more gas that night, & more bm's the next day, with more urgency. I feel like my GI tract can handle about 1500-2000 calories a day & then it just quits on me. I wonder too if our colons haven't become hypersensitive to food, any food, at this point. After years of inflammation, ya know? As far as Humira goes, I've heard that people who build up Remicade antibodies generally get decent results on Humira. Because of the lack of mouse proteins in Humira, I guess you develop antibodies less frequently with an all-human protein, as opposed to the mouse ones in Remicade. But this is just what I read on here, from posters who have had great luck with Humira. For me, it's definitely worth a shot. I look at it this way- Remicade has bought me a couple pretty good years so far & I'm still planning to stick with it. If I need to go to Humira, hopefully that would buy me a couple more good years. And by that time, who knows what other treatments may be in use for UC? I just don't want to pursue surgery unless my life is totally in the toilet- no pun intended!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 10/22/2008 6:32 PM (GMT -6)   
Eva I agree with your assesment on humira versus remicade. I also agree with the calrie thing, or the volume. I also went on remi due to thepred thing, but I had only been on pret to flare terrible and then he decided remi was the deal. d twice in two years and I am kind of pissed at my doc since the highest dose I was ever on was 30 mg. 20 will put me into remission but when I would taper I would start to flare and he convinced me remi would be the deal....not....anyway we are all subjects for futute consideration as far as remi goes. I have tried to stop and tell him it makes me feel worse but he has the picturery ths to prove he is right....I will next course and see what happens,,,I will let you know

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/25/2008 10:34 AM (GMT -6)   
Eva, I have to agree as well that the amount of food that I eat affects my movements the next day. Of course, what I'm eating also plays a part, as I'm still maintaining a low residue diet for myself. I've been trying to taper off pred, and I think the middle of this week will see my last dose. See what happens then...I'm down to 5mg, my bms are formed, no blood or mucous for a couple of weeks, some gas and a little urgency. I'm not exactly sure what I'm supposed to feel like when I stop the pred. I know I won't be like the pre-UC me, but it would be nice to start eating some normal foods again. Rice crispies, eggs, and chicken are starting to get a little boring. I'll take things slow, I don't need to kick start a new flare.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements:  Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema every other night, Prednisone (down to 5mg), flaxseed oil, L-glutamine.

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