Proctitis: how can 3-5 cm of inflammation cause so much trouble? (And how do YOU treat it?)

Elaine and emory.....my heart goes out to both of you.  At the moment, praise be to God, I have no added stress in my life.  God only knows what it would do to me if I did.  This stubborn flare just doesn't want to let go of me.  You see all the meds listed below.  Today I feel like a zombie.  I had to take ambien cr last night and finally did get a full eight hours of sleep, unlike the three I had the night before.  I am able to do my wash today.

 

Elaine, I know how stressful it is to be a caregiver.  My mom lived with us after my dad passed away in April of 95.  She was the sick one and I am convinced the stress of taking care of her and worry over her condition led to dad's demise.  Mom had a multitude of illnesses, congestive heart failure, she was on peritoneal dialysis, high blood pressure, diabetes, etc..  When she moved in with us, it was a constant worry.  During the same time, our youngest daughter went off to college and oldest daughter got married.  Mom was determined to make it to her wedding and she DID!!!  Even though she was discharged from the hospital two days before.  I didn't develop UC until 1998 and mom passed in 96.  However, I did have symptoms of IBS.

Thanks, Christine1946, but Elaine, tough as my situation was, I think yours is infinitely more challenging. It's easier to be sick yourself than to be worried about a sick loved one. That said, I'm not finding this illness very easy! Let's hope we all continue to get better...

Hi Emory,
How's the acupuncture going for you???
I just got diagnosed (about 2 weeks ago) and I'm on rowasa until tomorrow, then switching to canasa suppositories (since I have proctitis, the doc thought it best to use that instead of the regular pill).
I'm trying to slowly start a vegetarian/vegan (if I can) diet to see if that helps, and I'm trying to get back to my regular yoga classes.
I'm thinking that between the diet and maybe acupuncture, I can get this thing into remission, let me know.

Hope you're doing better. The only side effects I've had from rowasa are that I'm constantly tired....nothing serious though.
Danni

Hi Danni and Elaine,

I think the acupuncture is helping, though my treatments have changed so often, it's hard to tell what might have an effect and to what degree. Last time, on Friday, the acupuncturist did moxibustion (applying heat to a specific point on my big toes) to help stop bleeding. And I am seeing less bleeding. If nothing else, it is very relaxing and helpful for sleep/anxiety.

My yoga teacher is also helping me identify postures that are good for the digestive system (squat, apanasana, lying down and pulling one knee in to the chest at a time, etc).

I have to say that I've actually been following a worse diet than usual, the bland "white" diet to a large degree, trying to avoid foods that might scrape the inflamed areas.

Hope the Canasa will work well for you, Danni.

Elaine, looking forward to finding out what the doctor has in store next for you.

Take care,
emory

After I was released from the hospital in March, I did accupuncture every week up until this month. I stopped. There are specific points for the rectum but honestly I did not see ANY improvement in my proc***. It does help with anxiety. Its 45 minutes of time to yourself. It feels great and when you go "deep" it is the most relaxing ever!

I am still not doing well. Doing the canasa 2x a day and the hydrocorti enema at night. Still blood. No urgency or D but BLOOD. I just hate it. I have my colonoscopy on the 7th. I refuse to go back on Prednisone. Refuse.
I have been talking to Kim about the antifungal diet....(KIM THANK YOU FOR ALL THE INFORMATION).

I also think I need to quit drinking. Not that it "hurts" the proctitis - but it thins your blood so I might be seeing more than I would normally see.

WishfulMA,

I'm so sorry you're still not doing well. How long have you been doing Canasa 2x/day and Cort enema at night now? Remember that blood may be the last thing to go; my doctor told me that, and I've had people here on the forum tell me the same thing. I keep repeating it to myself, almost like a mantra.

I think you're probably right that drinking alcohol won't help matters. Our digestive systems are already on overload and extra sensitive.

I am not currently taking any oral 5-ASAs, just the Canasa. Rowasa enemas would be my next step. I tried Lialda a couple of times, and was really sick (nauseous, unable to eat) -- it may or may not have been to blame.

Take good care,
emory

Well, here I am - unable to make my appointment.  It is a 45 min. drive and I have D today - of course - haven't had that for  a while.  I will be fine later but she did not have any appointments later - not until Friday so gotta wait until Friday.  I am sure she will call. Maybe I can try two Canasa or something in the meantime. Even willing to try Rowasa without the pills - I am beginning to think that might work like every other day.

ElaineNY

I just wanted to add b/c I didn't see Munchkidd post (she turned me on to this) sulfasalsadine and I hope I'm spelling it right. I've tried, Asacol, Colozal and Pentasa and all made me sick (very nervous where I was having accidents all the time while driving) and they never stopped the diarreah, blood, mucus and all that. My doctor cocked his head sideways when I said I was having this reaction. Of course, they think we're a little nutty. This sulfasalsadine has worked the greatest for me and then the canasa at night.  I have to watch the food I eat, not wheat or dairy! These are known to be inflammation starters. I'm glad I checked into the sufasalsadine it's worked out great, but I have to do the canasa too every night. I do the metamucil every other day.

I hope this helps and I hope you feel better soon!

ComedyDork - that is an impresive list of medications you have been on or tried.  May I ask why so many?  Allergies, reactions, didn't work, etc.

Is the Remicade working? 

ElaineNY

Elaine, here's the long answer: When diagnosed I started with 6 Asacol and Rowasa; since I was having trouble w/ Rowasa, I stopped it, which was fine since Asacol kicked me into remission. Then 6 months later when I started to flare, I began to take 9 Asacol and Canasa. Although Canasa got rid of the blood, it caused diarrhea. So I started Proctofoam and used that for 2 months (it didn't help much either). Then we decided to try Lialda and see if it would help any, which it didn't. My GI suggested Rifaximin, which is an antibiotic that only kills off bad bacteria (acc. to him) and has been used successfully for UC; it made things so much worse even though I doubled up on probiotics. So then I started 6MP, but I only took it for 2 days b/c it caused horrible side effects (severe nausea and diarrhea) for 3 days and I ended up in the hospital. And that's when I started Remicade. None of the probiotics I've tried have helped, but I still take one per day just in case. Oh, and I switched from Lialda to Colazal.

Remicade helped some but not a lot, so I scheduled surgery. But the c-scope showed that Remicade healed all of my colon except for the last 4 cm, so I canceled surgery and started rectal meds. But according to my GIs, the rectal meds and the latest Remi infusion should have stopped the remaining bleeding. However, doubling up the rectal meds have helped over the last couple of days. So I'm not sure what to think now.

emory, yep I'm taking the same one!

ComedyDork, if doubling up has helped, maybe you would benefit from a stronger rectal med like Cortifoam or enema? (Like I know what I'm talking about...haven't tried either yet.) It doesn't seem like it's time to give up hope yet. Quincy, are you reading? What should ComedyDork do?

Wishful MA

I have been reading the posts, but would like to ask about the antifungal stuff. I can not stop bleeding and am so upset and frustrated. I am taking Asacol, Canasa, cort enemas and Rowasa. I have not eaten anything but chicken soup and eggs for a week. My Dr is hesitant to do a colonoscopy but I'm wondering if it will show something different. Any ideas from anyone would be welcomed, I am just so nervous about all the blood.

Toriblue,

If you can, try to eat some more substantial food. Foods shouldn't cause you to bleed. Even just some white rice or mashed potatoes, simple things to fill you up might help. You have to keep your energy up; I know, because I was barely eating anything for a while.

Also, I feel that the smooth texture Metamucil I've been taking for about 10 days now has helped with my bleeding. Are you taking any soluble fiber?

How heavily are you bleeding? How often? I know it's so upsetting to see red, but try to keep calm about it. How long have you been taking your current medicines?

I hope you'll be better soon!
emory