Posted 12/30/2007 6:26 PM (GMT -6)
It seems that having this disease really has it's ups and downs. It's easy to get down when you are on the tiolet all day, unable to leave the house, and feeling weak. It's a lot easier to be up when you feel normal which sometimes can be hard to feel. I tried so many meds and had the same problems as you until Remicade. Once I started it, I finally was able to not be on the tiolet all the time. Unfortunatley, I recently had a reaction to it but will try Humira. I used to be so fearful of the heavy duty drugs, but now for me I'd rather risk taking them than to live so miserably. I take Lomotil on really bad days. If I start having too many bms, I take one pill and it seems to slow down the movements or even stop them. It makes me drowsy and I usually sleep after I take it and am able to wake up a few hours later and feel better "most" of the time. You just have to be careful it doesn't back you up. I have to add that I totally recommend the book "The New Eating Right for a Bad Gut" by James Scala. It is an excellent book. I hope you are feeling better soon. (PS- I couldn't see the images you posted but I tried.)
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade,ulcer shrunk in 3 months August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis? & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had a reaction will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Back to Prednisone again :( for joint pain

Posted 12/30/2007 10:13 PM (GMT -6)

I know it is horrible and demeaning to consider but…………..maybe an incontinent nappy may assist.

 

I use to wear adult incontinent nappies. They are really only made for urine but the brand I use to buy worked well in the short-term for other little accidents as well.

 

I brought a range called DEPEND regular underwear; they also have “super” underwear for more absorbency.

 

If in the middle of a flare, you can wear them out with confidence in the place of normal underwear (but for added protection and security, I wore them under my normal underwear).

 

I have lost control of my bowels in many public places: shopping centres, gym, work and train whilst wearing the pad. It will “hold it in” until you can get to a toilet.

 

I was also wearing them at home, as a number of times I would lose control between the lounge room and the bathroom.

 

I also recommend the book: “Self Healing Colitis and Crohn’s” by David Klein.

 

.


MoonShadow.

Australia.

Female 37.

Sick since 1998 – finally diagnosed 2003.

No drugs (last drugs were taken in 2005).

Healing myself thorough diet & natural methods.

Using plant derived MultiGest Enzymes capsules as part of diet.

 

Feeling fantastic!

Posted 1/2/2008 6:06 PM (GMT -6)
I'm going to get blasted for suggesting this. Please don't kill the messenger but if you are at the end of your rope you can do what I did. I am only doing this until a good medication or cure becomes available. Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.
Think nobody cares if you're alive? Try missing a few car payments.

Posted 1/2/2008 6:57 PM (GMT -6)
Peet, I have had similar experiences with smoking. The problem is, that at some point, the disease overtook even the smoking cure(so to speak).
My first flare occurred when I first quit smoking(The first time).
I still prefer to have bleeding rather than smoke and get emphysema. Even 6 a day is harmful. I am not blasting you because I have
even had a GI tell me that smoking does help with colitis, but he couldn't prescibe it in good conscience(meaning....)
Scottishcam, hang in there. The frustration is hard and the feeling out of control. We are with you.
I am a Certified Doxie Lover(Weinerdogs)

Posted 1/2/2008 8:56 PM (GMT -6)
Peet said...
Smoke 6 to 8 cigarettes a day and less if it still works. The carbon monoxide (not the nicotine as previously thought) will put you into remission. For me it always has and always will and any other colitis/smokers I know are in the same boat. I actually hate smoking and it disgusts me and yes it's bad but I am completely blood stool free with no symptoms ever ... until I quit smoking then it's back with a vengeance ... start again and it's gone within 3 days.
Peet - I smoke and still got UC and it does not put me into remission. So, now you know someone who isn't in the same boat. It does not work for all UC smokers. Glad it works for you though. And I thought no one knew if it was the nicotine or the carbon monoxide or what. There have been studies where the nicotine patch helped UCers.

Scottish - I hope things start looking up soon. Hang in there.


23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - as needed for flares
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D) for Osteopenia; flaxseed

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