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Old 06-26-2012, 07:47 AM   #1
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need Crohns advice

Hi all - I was diagnosed with Crohns in 2001 when I had a horrible bout of diarrehea with pain so bad I was passing out and then a little while later I started an 8 hour session of every time I had to pee pure blood gushed out of my rectum (of course on a weekend). Doc on call gave me Prednisone which finally stopped the bleeding.

I was then on Prednisone for a year and went into remission. The remission lasted a few years but the inflammation is back mostly now in the lower colon and rectal area. I can not take any of the Crohns meds as I have become allergic to them and can't take Prednisone as it gave me bad osteoporosis and I am now also allergic to cortisones (Proctocort, Cortenema, etc.

I try to keep myself stopped up with rice, applesauce and low liber...hardly any veggies and then I get little balls with mucous and get impacted and finally have to drink some coffee and that usually empties out my whole colon (kind of BM you just can't can not clean up no matter how much wiping you do)- along with some blood from the inflammation and a day of terrible pain. I also get "tenusmus" where I feel like I have to go but don't and from straining I now have a problem with my insides coming down and I can't tell if there is stool that has to come out or my insides. Doc has me getting washed and then putting in vaseline after BM's and then getting washed again as I get frequent UTI's. Lots of times I am sure I have stool in there and when I put in the vaseline I find there is nothing in the canal - just my insides. I have even wiped my insides when I wiped myself so I have to be very careful not to strain and that sometimes is hard. I did have myself in a pattern of little balls most of the week and one colon emptying a week but now that has changed.

Doc can't do a colonoscopy because I am allergic to rubber (carba mix) and that is in the bends of the scope and I would swell up inside so he has been relying on sigmoidoscopy. Also can not do barium.

I have an appointment July 9 and not sure if I should wait that long to see what the pattern is so I have something concrete to show him. I have had some bleeding before and he determined it was from the inflammation in the rectal area. It's just that if I do get a little blood (always bright red) I usually don't have it again for a while. This time it was on the 22nd and again last nite the 25th. The 22nd was I guess from it being large and messy and I had to hold it in until I got a plastic bag for my wipes and last nite I strained a little (it was little balls).

Anyone else having these type problems or any advice as I am so tired of the tub, vaseline, tub routine that sometimes takes up a lot of my day. I started to take 2 Culturelle a day which seemed to be helping but I stopped that since the new episode. I just seem to go from too messy to being too stopped up and can not figure out how to fix the problem. All the meds I can take for the Crohns are Librium and Librax, Omega 3 fish oil and Culturelle and have been on them for years now. I'm losing weight again too as I don't know what to eat but I do drink 2 bottles of Boost per day. For a few years after the Prednisone I was even able to have lasagna and pizza occasionally and lead a semi normal life but for the past couple of years I am back to baby beef and turkey and instant potatoes and rice.

Thanks for any help.

Last edited by suggi; 06-26-2012 at 07:49 AM.

 
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Old 06-26-2012, 12:20 PM   #2
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Re: need Crohns advice

Hi...you're definitely in a bad state if the medications and scopes cause you serious reactions.

Regarding the CD meds that you cannot take...what exactly are they?

Do you know where exactly your CD is located...is it just limited to the lower part or do you have it elsewhere in your digestive tract?

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Old 06-26-2012, 05:28 PM   #3
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Re: need Crohns advice

Hi - Thanks for responding. So far it seems it is only confined to the lower colon and rectal area.

I am unable to take any of the present meds out there so unless they come up with a new one I am stuck with Librium and Librax topped off with Culturelle probiotic and omega 3.

I had reactions to all but never tried the biologics which I can not take because my immune system is shot and I tested positive to the TB test as a kid although I never did get TB - just exposed to it but those meds could bring it out and who knows if I am allergic to TB meds. I am allergic to all antibiotics except the cephlasporins and levaquin family. Since Prednisone is out because of the bones there is nothing left. At this point, I believe I am also developing a prolapse in the rectal area and that's all I need. Sorry to be so descriptive but afraid to tell anyone as I will turn everyone off but if I strain a little it feels like stool stuck at the opening but when I insert the vaseline there is nothing in the canal. Doc said nothing you can do about that -- he just tells his patients to push it back in! Says it happens a lot with Crohns disease. lol

 
Old 06-27-2012, 12:30 AM   #4
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Re: need Crohns advice

Hi...you're in a very tough bind, and for you to have your disease limited rectally...have you not used any mesalamine rectal medications at all?

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