HealingWell
Search Close Search
☰

back from Mayo and flaring

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/1/2009 7:08 PM (GMT 0)
Hi all- I have not posted for some time.  Just got back from 2 weeks at Mayo.  I was able to be part of the pelvic floor disorder clinic where they do bio-feedback.  It turns out that  my being on Rowasa for years and confused my brain as how to pass stool.  My plevic floor mucles want to keep it all in ---even if I have diareha.  It was amazing and I learned al ot about my body.  I have a very mad hard time relaxing.

Well I am now having (what seems to be getting wrose every 2 days or so) a flare of my U protitis.  All that wants to come out is blood and mucous. Dr. is concerned to use meds that have to be inserted because it only then re-trains my body to hold everything in. 

Was on dipentum but to no avail.  having a follow up- sigmoid in 2 weeks.  He thinks I will then have to be on opne of the major drugs which I am very soncerned about.  Havn't had luck with azecol and others in that family or entocort. 

I am now not wanting to eat because I am feeling so uncomfortable.  When I pass gas now- blood and muc. come out.  Sorry so graphic.  any ideas or comments form those that have been on remi or others in that family?  eyes

Posted 12/1/2009 10:15 PM (GMT 0)
Hi- I forgot to say the meds I have been on- pred, lialda, azecol, sulfa salzine. rowasa, canasa, enotcort, cortifoam and dipentum- all with little effect other than the rowasa. Very nervous about remic. what are other's experiences with such meds.
Posted 12/1/2009 10:27 PM (GMT 0)
There are a LOT of people on here who are on remicade and are doing wonderfully.

Try your best to eat something....getting weak due to lack of food intake isn't good!
Posted 12/1/2009 10:33 PM (GMT 0)
I just started Remicade and I am already feeling much better. I was nervous too but my first infusion went well. I know it is hard to make the decision to take the Remicade plunge. Good Luck!!!
Posted 12/1/2009 11:21 PM (GMT 0)
WI Chica---
I'm interested more about your experience at Mayo clinic. What else did they do with you? Rowasa has caused you to not pass stool well? What's a pelvic floor disorder? I'm interested if you could elaborate some...
Posted 12/2/2009 12:12 AM (GMT 0)
They take you off Rowasa and you get worse so they suggest something more risky.

I have diarrhea frequently and thus hold it in when sleeping and, well, anytime I'm not on a toilet. By their logic I am training my mind to hold stuff in...okay. But I am still able to go when I'm on the toilet because my mind knows where I am. I also use psyllium husk fiber to help movement and bind things together and I don't try to push or force out the stool. Instead I relax, move my upper torso around a bit, and let the natural spasms on my colon work the feces out.

Maybe if you just use Rowasa right before bed and lay down right away. Then don't get up until you're ready to expell it in the toilet.

I don't buy all their story. i would not go off the Rowasa.

Maybe you're leaving something else out. What exact problems are you having? How about using a stimulant, caffeine, to help the bm along?
Posted 12/2/2009 12:53 AM (GMT 0)
     No one was more frightened to go on Remicade than I.  The reason being I was given a PPD test back in the 60's before going on a trip to Europe and it was positive.  I had a chest xray which turned out to be negative and the doctor at the time said that I must have been exposed to someone with TB and the virus was dormant in my system and not to be alarmed.  Well, I did work in a hospital lab at the time and did blood rounds and I also had an aunt, through marriage, who died from TB and we did visit her when I was a child.  We were told she was not contagious.  Last year, when I was hospitalized with UP, my GI doctor wanted to put me on Remicade but his associate said NO WAY because of that positive PPD test over 40yrs ago.  They gave me a repeat PPD test in the hospital and it was negative but I also was on high doses of prednisone which can give a false negative.  Since being hospitalized last year I have suffered three major flares.  The 6MP wasn't helping anymore and I was becoming prednisone dependent.  I finally threw in the towel.  I had a long discussion with my GI doctor.  He had his nurse give me another PPD test the first week of Nov.  I was then off the prednisone for two months.  The test was negative!!!  I started Remicade on the 18th of Nov, my second infusion was yesterday.  I noticed a significant improvement in my condition two days after my first infusion and I continue to feel sooooo much better.  My only regret was not starting it last year.  My doctor said I could have had a false positive result 40 yrs ago!!!! UGH!!!  Please, don't be afraid of Remicade.
Posted 12/3/2009 1:50 AM (GMT 0)
Oh- so appreciate all your comments.  I can explain the pelvic floor dysfunction a little more.  It appears that my pubicrectalis muscle has great difficulty relaxing to let any type of stool out weather it is loose or hard.  It is realy strange but I can have a sensation to go and then my muscles pull everything back in.  that is what the bio-feedback has been for--- to teach me to relax this muscle that is crucial for defication. 

Some of it they believe is due to all the meds I have inserted for 17 years along with being very anxious when I go to the bathroom for fear that others will hear.  I also become fearful of expellig blood and mucous so i just hold it all in. Because these muscles are so confused the Dr. doesn't want to cotinue to confuse them while I am trying to relax them to let things pass.  NOT sure if I am making ay sense.

 

I haven't been real good about taking rowasa for a month or more at a time.  I cramp up so much-  maon for about 5 min or more- so it has beena deterant.  Maybe I haven't take it long enough for an extended time to make it really work.  I just hate taking it so mcuh. 

 

Let me know what your thoughts are on the above.

Posted 12/3/2009 11:14 PM (GMT 0)
I think it sounds like it's good for you to not use enemas until you get your problems sorted out.

However, I do want to say that as I don't have issues like WI chica describes (fear of being heard, etc), I'm not worried that using enemas long-term would cause me to have a similar problem.  When I first read the post, I was worried that it could also happen to me, but I have no fear of letting things fly! ;)
Posted 12/3/2009 11:18 PM (GMT 0)
sorry didn't get back...not doing so well lately

my sister never could handle rowasa and i know the feeling of trying to hold it in when everything is spastic...not easy

since you think the rowasa works can they give you an antispasm drug to take only when you take rowasa at night so you're not fighting your body's natural reaction to have a normal bm while holding in the rowasa?

i used remicade and it put me into remission but i wouldn't have tried it if rowasa and other, safer drugs helped

what did the GI at Mayo think about you going off rowasa?

what about using a stimulant (caffeine) to help promote a bm?
Posted 12/4/2009 2:09 AM (GMT 0)
Oh dear- I know how to use caffine- a bit of an addiction for me. I do make sure to use decaff after 11:00 though. I see we are the same age. this stuff suck. Well I am meeting withthe Doc. on the 15th to discuss all of this. they are doing s sig. that day. I have problems more with being worried about sound. I tend to keep my abs very tight cuz i don't want to let the belly hang out. this creates problems for the pelvic floor. some due to eating dis history--- not now but in nhigh school and college. have con.ditioned my body so much to hang tight all the the dang time.

To find more info. on this LOOK up MAYO's motility clinic.

I will ask about an anitspasm med. that sounds interesting.
Posted 12/4/2009 3:07 AM (GMT 0)
You are embarrased to make a lot of noise. I understand that; we have all been there. What if you flush while sitting on the toilet to mask the sound? At home or with family you just have to make fun of yourself.
Good luck.
I have a flex sig. on the 10th...I said, "yuk" to the GI and he said, "do you think I like doing it"...I said, "but you get paid for it."
Posted 12/4/2009 3:08 PM (GMT 0)
water runningg-toilet flusghing, fans, humming- he he he- i have trieded it all.It is now also muscles acting on there own- because of how I have conditioned them over the years. THank GOD we have this site to talk about all of this- thank GOD.
Posted 2/26/2015 2:08 AM (GMT 0)
WI chica:
I saw your post about me reading this and recall all the help you and others gave me back when I was hospitalized and (as in here) prior to that.

Thanks to so many! I was admitted a few weeks after this and got well and have a 5 year remission now.

How are you doing now?

This conversation was interesting. I still run bathwater when going for the noise but it doesn't help much.
✚ New Topic ✚ Reply