Diagnosed with Proctitis and feeling so discouraged!

After having blood in my stool for several months, I finally told my mother who of course was super alarmed and had me set up an appointment with my doctor. She preformed a colonoscopy and discovered I had quite a few ulcers and diagnosed with me with Proctitis (a disease I had never even heard of). She called it a "condition" and made it seem like it wasn't a big deal and would probably go away after some medicine. She put me on Canasa which helped at first and then all of sudden it wasn't helping at all!! I called and she put me on Budesonide (Entocort). This cleared it up...for a little a while. I was pretty good for about 5-6 months and then it came back and full force. Called the doctor and she put me on the Budesonide but this time it isn't doing anything at all!!!! I have an appointment scheduled for another doctor next week and am also planning on seeing an Acupuncturist and Homeopathic doctor soon!

I know this may sound dramatic but this really is the worst thing that has happened to me so far in life. I just turned 29, have been and am a health food nut, obsessed with fresh fruit and veggies, do yoga regularly, surf, kite board, super active and take care of my body it's just so insane that this just came on out of no where and no one really has any good answers...Other than to take meds for ever which sounds awful and terribly bad for my body OR worse have to have surgery! What is going to happen to me! Ahhhh! I feel so lost and alone. Any advice would be greatly appreciated! Thanks!

After you went into remission from the entocort did you take any maintenance meds to keep you in remission?

My next appointment is with a GI specialist who deals mostly with this type of disease. I hope she can have some good answers!

BTW...I don't know of anyone who has had only 1 episode of this when left untreated.

I was first diagnosed with ulcerative proctitis by my gi after a colonoscopy in 2011 and he put me on canasa suppositories, cortifoam enema morning and night for 10 days and then nightly for another 20 days and asacol oral meds. I did all like I was suppose to and my flare went away. I have gone 50 years drug free and all of a sudden I am on first name basis with the pharmacist at cvs.

Its unfortunate, but this is what has to happen in order for your to remain symptom free or least control the disease so it does not go up further in colon. Not to scare you but because I was in denial and after I felt better from the meds, I lowered the dose of asacol from 6 pills a day to just 1 and never did another canasa suppositority for a whole year and than bam I got symptoms again and the next time I had to use a stronger medicine in order to get me out of the flare hydrocortisone enema, which did help but on my last sigmoidoscopy my ulcerative proctitis is now ulcerative protosigmoidtitis (which is now 3 inches higher in colon). I don't know if it would have gone up those 3 inches anyway, but I have to attribute it to the fact that I did not take the meds like he said.

I now am doing my regimen religiously in the hope that I can stop the progression.

So please talk to your gi and don't be afraid of medicine that will help you because the alternative would be something even stronger and harder for your body.

Hope you feel better soon, and welcome to the forum.

For the 30 year old lady diagnosed in February with proctitis. I was diagnosed in 1973 with it after having symptoms of phlegm/raw blood in stools and no appetite. I was put on a low residue diet and told that food allergies could cause it. Remember these were the 70's but the diet did help and I did find out that food did play a role. Prior to this time and in 1971, I had severe spastic colon immediately after taking strong antibiotic after childbirth which was probably due to bacteria imbalance. (Ignorance at that time led me to diets and pain medication)s.
Eventually, I had food sensitivity tests which proved extremely helpful. I would have severe and horrible GI symptoms with cane sugar, yeast, dairy, brewers yeast, corn, garlic, onion, etc testing. Since I didn't tolerate the vaccine because of preservative, I only used elimination diet.
One time after taking drug Danocrine, I was in hard labor pain for two weeks and I wasn't pregnant. Another flare up caused by husband to have to leave work to come home and turn me over in the bed because I was in so much pain. *By the way an old doctor in Anniston, AL one time told me that extreme temp of cold and hot liquids would trigger GI spasms.
Then came a health group touring and teaching through the local Seventh Day Adventist church.
They let me try some Slippery Elm Tea and it has been my MIRACLE cure. It is wonderful for the healing of BLEEDING, nausea, PAIN, diarrhea, constipation, urinary tract infection even when your're bleeding with it, virus, GI reflux, hernia problems, and bronchitis.
I use about 1/3 cup of water in microwave on high about 39 seconds and then add between 1/3 to 1/2 tsp of slippery elm powder. I don't like the water if it is too hot or cold. You just have to play with it. It looks like cocoa to me. It doesn't taste bad to me unless, I don't have proportions and water temp just right. My grandchildren have been taking it all of their lives and even ask for it. I will let it gel sometimes and use it topically for yeast patches or whatever.
I cannot take medicine or vitamins by mouth. **Sometimes I can go months without taking it. Right now I am having to take it first thing in mornings for bleeding. I should take it at night also. You know how human beings are though.
I had a sudden onset of a UTI with some bleeding prior to taking an 1!/2 hour trip. I took a whole cup with more powder and an hour later another cup. The symptoms and bleeding subsided in time for me to go on the trip with no discomfort.
**Don't give up. Don't look at the mountain. I looked at the One who could move it. I have been going on a journey and seeking Spiritual wisdom. The bottom line is to focus more time on heavenly rather than worldly things. Give God time to open doors for you to go through.

becroxy said...
No, because my doctor said if I cleared it up that it might never come back and that some people only have one episode. And I don't want to be on constant meds for the rest of my life. That is horrible for your body.

Your mindset is going to need some work.

All the fresh fruits and veggies are awesome, but when you have an inflamed rectum your diet is probably making things worse. Cook all your fruits and veggies for a while, until you feel better, to relieve some of your discomfort. Fiber and bowel inflammation do not go together.

Mesalamine, the medicine in Canasa, is essentially a topical medication. I'd rather you took the 4g retention enemas, because they will get you more coverage and also cost less, but they are the same drug. The budesonide is a steroid and you're right - you should never take a steroid long-term. The mesalamine is poorly absorbed and has essentially no side effects except the one you want - getting rid of the inflammation.

No one knows what causes ulcerative proctitis/colitis, but there is good evidence that the gut biome is involved. Taking antibiotics disrupts the biome. Eating lots of processed food is probably not good for the biome, etc. etc. There are some good resources in the post at the top of the forum page that you should read.

The bottom line is that you should treat your proctitis like a chronic illness and support a remission with continuous use of rectal meds. You might be able to get to an every other night kind of thing, but stopping when you get better is pretty much an invitation to your next flare, which may in fact be worse. You are already experiencing steroid resistance. The inflammation could go higher than your rectum, which I'm sure you don't want.