New member in need of support

[JMB]

Hi All,

I was diagnosed with proctitis in the summer of 2009 after a couple of months of very regular and confusing bloody/mucousy D. I was initially diagnosed with Colitis but last spring my GI doc did a blood test that said it was actually Chron's (but that with proctitis they would present similarly).

Since I was diagnosed it has been quite manageable. Through some research I started taking a tumeric supplement daily which allowed me to only take the Canasa suppository about 1x per week and be able to maintain with no symptoms. If I did have some symptoms (bloody/mucous D) I would take Canasa for a few days and be back to normal. I now realize how lucky I was. 3 weeks ago I had horrific lower abdominal cramps that accompanied very bloody loose D up to 12x per day. I am going on my 3rd week of this and while the cramping stopped after 2 days (and the start of oral prednisone) I am still pooping about 4-8x per day, have lost 10lbs and feel completely weak, lethargic, and unhealthy. I also have that sense of always needing to pee (like a bladder infection) and really having to strain to get it out (which always brings more D.) My doctor has me on 30mg of oral predisone as well as nightly Canasa suppositories. I feel like I am never going to get back to "normal" again (pooping one time per day and having energy to live my life and do all the things I can do). Friends keep suggesting I should try gluten free diets. Anyone had any miracle results with this? I am a vegetarian so hate to think about having to limit my diet even more, but I am starting to really lose my enjoyment of food as this wears on.

So do I just have to accept this is going to be my lot in life forever? Will I ever get back to months on end without symptoms? Is that unrealistic? My doctor said she wants to do a 2nd colonoscopy based on this last bout to see if it has moved higher into my GI tract (so no longer Proctitis). Ugh.

 

[Nica]

Hi welcome to the forums.

I am so sorry you have been through all that.

As far as no Gluten, have you noticed what bothers your symptoms more? Have you had a test for celiacs?

The thing with Crohn's is that you have periods of flare and remission. Sometimes you will feel great, other times you will have massive symptoms that continue on for a while. Once you find a treatment medication that you can live with, that gets your symptoms under control you will feel better.

 

[Sandy]

Hi JMB,

If you have proctitis, the Canasa makes some sense -- at least you're getting meds to the area that needs it. I also have Crohns only near the very end, so to speak, and I take -- now this will sound awful -- a product called Rowasa, which is like Canasa, only as an enema rather than a suppository. But -- and here's the good part -- if there can possibly be a good part to a nightly retention enema -- I put about 5 mg of budesonide in the enema, shake it up, and then use it. That gets the budesonide right to the problem area. After years of this, I've gotten used to it, more or less.

Budesonide is good because it's a local steroid, sort of like prednisone but without as many side effects. It's used in asthma inhalers, and is the main ingredient in Entocort, which is used for Crohn's & colitis. Entocort works for people with problems near the join between the large & small intestine. It doesn't work for me, because my problem isn't there, so that's why I go the other route.

To get budesonide to be added to the Rowasa it needs to be compounded. You can ask your GI doctor about that.

It sounds a bit crazy, but it works, and it makes sense that it works, because it's getting the med to the area that needs it.

Good luck!!!

Sandy