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

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Ulcerative Colitis
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Posted 9/30/2008 2:02 PM (GMT 0)

You know when I feel better (like now) I say I would try the mesalamine medications again too but then I remember how sick I got after a few days.  I KNOW they worked but staying home a week or forever because of being too sick to go out does not appeal.  I am not trying any of those again unless I don't have a choice (and there are other choices). 

ElaineNY

Posted 9/30/2008 3:20 PM (GMT 0)
emory--My GI told me that using the foam or enema will go too far up my colon and not really affect the inflamed part. Which is fine by me; I find the suppositories easier to use!

Elaine, how is Align working for you? I've tried 3 type of probiotics and none have helped; maybe I need to switch again.
Posted 9/30/2008 3:25 PM (GMT 0)

Wow - wish I could remain on Canasa - better/easier to use than the foams - but mine is up the left-side a little bit.

As for the Align - I think in about 2 week (hard to remember) my stool started being more formed and been that way since - taken it for 3 months now and just little gas during adjustment period.  I tried one other that gave me too much gas so went back to Align.  I have IBS too so thnk it helps me more there.

ElaineNY

Posted 9/30/2008 4:36 PM (GMT 0)
You know...thats interesting...my inflamation is in the lower part of my rectum. I think the lilttle bit of improvement I saw was because of the 2x canasa. So today I decided to use the hemmie suppository w/ the 25mgs of steriods (which would target the area more) and a canasa at night. Perhaps this is the combo I need!!!

I switched from VSL#3 to Primal Defense Ultra Probiotic.

I have not done the antifungal diet. I have in the past 2 days given up carbs and am doing high protein and veggies. I dont think food is causing my proctitis. I just have put on 22 lbs with all the steriod use.
Posted 9/30/2008 4:40 PM (GMT 0)
I am thinking of asking about the steroid enemas when I go Friday.  I just have to stay away from the mesalamine medications.

Primal Defense is the probiotic I had to give up because of gas - hope it works better for you.  WE are all so different and my IBS causes me problems with food - but I know food does not cause problems for my UC!

ElaineNY

Posted 9/30/2008 9:39 PM (GMT 0)
ComedyDork, that's good to know that your doctor said the foams and enemas go too far up for the inflammation. I assumed the medicine would be pretty evenly distributed the whole way up.

Elaine, maybe that means the cortisone enemas will be just the thing for you!

WishfulMA, hope your new combo works well.

I am a big fan of the Metamucil so far! Things continue about the same -- a little blood, but much less than last week.

Best to everyone,
emory
Posted 9/30/2008 11:12 PM (GMT 0)
emory..i just bought the metamucil....how much do you take? i see 2 tsp...but it says to take a tablespoon. how much water do you add?

i am glad to hear you are doing better. it seems we have such a similiar case. i just had a bone density exam today. last time they said i was predisposed to osteopenia. i am wondering now whats going on because of all my steriod use.

Elaine - i agree with Emory..maybe the steriod enema is what you need.
Posted 9/30/2008 11:31 PM (GMT 0)
I use a heaping teaspoon, the kind of teaspoon you'd eat dinner with, not the measuring kind. I add 8 oz of water for each teaspoon; actually, I prefer the taste stronger, so I add two teaspoons to 8 oz, drink that, then drink 8 oz of plain water right afterward.

It does seem we have a similar case. I hope we'll similarly improve and similarly be in remission soon...

Re: bone density - if you're younger than about 35, you can still BUILD bone density through weight-bearing exercise and calcium intake. I had bone density taken three years ago, a few months after I'd been on steroids post-surgery, and then again last winter -- and last winter's bone density had improved, even at my advanced age! So it's not a hopeless case.
Posted 9/30/2008 11:41 PM (GMT 0)
EVEN AT MY ADVANCED AGE!! 

 

Emory - I really had to laugh at that one - thanks - I need a laugh every day!

Ok, I have to tell you advancing age ladies that last bone scan doctor told me "you have bones of a teenager".  So, I assume steroids would not hurt me to much at MY advanced age!  HEE HEE

 

My knee surgeon gave me the ok to have knee replacement if my gastro doc says I am ok with no infections. 

We are going to Las Vegas a week in November so planning on it after that - depending on what this stupid UC does.  Feeling pretty good today!

 

By the way, I was reminded to ask my NP about the Metamucil.  My husband takes it every day for constipation.  She and the doc had told me NOT to take any fiber until I was in remission.  I will ask again.

 

ElaineNY

Posted 9/30/2008 11:48 PM (GMT 0)
Thanks Emory!!! Didn't you say you can't take it near or close to the time you take vitamins or mediciation? I can't wait to try it tonight :) And thanks for the positive vibes re: the bone density exam. I have been taking about 600mgs of calcium plus my prenatal vitamin. plus i eat alot of cottage cheese, etc.
Posted 9/30/2008 11:55 PM (GMT 0)
Yep, take the Metamucil at least two hours before or after oral medication (it says this on the package). Good for you for taking the extra calcium! I need to do more of that.

And good for you with your teenaged bones, Elaine! I admit I referred to my "advanced age" tongue-in-cheek; glad you appreciated it! And so glad you've got the go-ahead for your knee replacement, and Las Vegas to look forward to. My mom will have her knee replacement soon -- maybe next week (eek!). And she's enjoying herself by spending a week in Maui with my sister and her family, lucky her. (We were supposed to go, too, but I cancelled because of feeling so rotten. We can always go later...)
Posted 10/1/2008 1:49 AM (GMT 0)

We spent two weeks in Honolulu three years ago - our sons paid of us to go for our anniversary.  It was a very special vacation and I know you will get to go later. 

Tomorrow is my mammogram - yuck!  But - my gut is feeling pretty good just using Canasa - at least for now!

ElaineNY

Posted 10/1/2008 4:27 PM (GMT 0)
This morning (after my routine of the 25mgs of hemmie suppository & one canasa) my BM was very bloody. I am freaking out because I just dont know where to go or WHAT TO DO?! I have no idea what "routine works".......
Posted 10/1/2008 4:42 PM (GMT 0)

Wishful - boy, it is about time we (and many others) found out what works for us.  I hope Friday when I see my doc/NP I will find out something else.  I have been using Canasa (one before bed until I see NP (she ask me to do that).  Bleeding is not getting better - BM's are formed and only two or 3 mornings but continuing to be bloody mucous, etc. (sorry).  Do you have appointment or are you just "winging it" - this is no fun!! I know I am not using anything with mesalamine unless they tell me that is my ONLY choice.

ElaineNY

Posted 10/1/2008 6:26 PM (GMT 0)
ElaineNY ...I am scheduled for a colonoscopy on Tuesday. I thought canasa was mesalamine but in a suppository form? I just can not believe that 12 pills of asacol and tons of rectal meds can not HEAL one inch!

I think I am going to go back to 2 canasa per day plus a hydrocortisone enema at night. I saw improvement last week...but I really really really hate to put any more steriods into my body.

Good Luck Friday!
Posted 10/1/2008 7:03 PM (GMT 0)
Canasa is mesalamine, but it's just 1000 mg (4x less than Rowasa, say), so maybe a low enough dose that Elaine doesn't experience as many side effects.

WishfulMA, It is hard to know what "routine" works, especially since you have to give each one time -- a week, two weeks, or longer -- before you can evaluate results. If the hydrocortisone enemas were helping, maybe they will get things under control faster and in the long run you will end up using less steroids.

I also had more blood last night, and more frequent/looser BMs this morning, so am not a happy camper. But it's just one day; just trying to stay calm.

Good luck to you on Friday, Elaine, and to you next Tuesday, WishfulMA! I hope you both will get some answers then.
emory
Posted 10/1/2008 9:03 PM (GMT 0)

Yes, Canasa is mesalamine but as emory said low dose enough so one at night does not give me side effects - but, of course, is not working to stop bleeding and cramping either.  My NP just ask me to use one each night until I can see her Friday because I have them on hand.  Maybe they are helping so things don't get worse anyway.  I am not sure since I have been taking Imodium to be able to leave the house.  Bleeding early morning seems about the same. Anxious to see what the doc has for me since she would not prescribe on the phone or call in anything new.  I imagine she is going to give me my options.

ElaineNY

Posted 10/2/2008 12:18 AM (GMT 0)
Hi everyone, i've been reading through some of the posts and thought i'd let you know my experience of proctitis. I was diagnosed 14 years ago with 10cm of disease in the end of the bowel and struggled on and off for 9 years with mucous/bleeding and the occasional bout of diarreah. I tried all sorts of medications orally and rectally but only saw occasional results with high doses of oral prednisolone (i think it's prednisone in the U.S. - i'm actually from the U.K.) or I.V. steroids. Then one day I was discussing meds with my doc and he told me about something he was trying with another patient with proctitis and thought i should give it a try. I'd tried steroid suppositries and enemas in foam and liquid form without any joy, but the only dose they manufacture is 20mg. My doc suggested making my own enemas with boiled water and up to 60mg of soluble prednisolone tablets. I tried it and within 3 days my symptoms disappeared for the first time in years. I then started using the pre-prepared Predsol enemas (not sure if they're called that in the U.S.) which have 20mg Prednisolone in them but I added 30 or 40mg soluble Prednisolone tablets into the bottle first (much easier than making my own!) Eventually i only needed to use the enemas for a few days every few weeks and found that I had less side effects than when taking oral steroids as less was absorbed into the bloodstream. Unfortunately my disease spread about 5 years ago and i am now on remicade and discussing surgery with my doctor, but i still use the enemas every now and then for minor flare-ups. Oh, and if you try this (or any enema) try to do it just after a BM as it helps when trying to retain it, then just lie on your left side for as long as possible (i'm sure you know all this). I don't know if any of this will be of any help but i thought i'd tell you about it as it worked so well for me. Good luck with everything, i hope you find something that works!
Sherri
Posted 10/2/2008 1:45 AM (GMT 0)
Sherri, that's great information. Thank you! I thought some of the enemas and foams in the U.S. at least came in higher dosages, like 80 or 100 mg? Was it the prednisone (yes, that's the U.S. name) instead of hydrocortisone that made the difference for you, do you think, or the dosage?

Very sorry to hear that your disease has spread, and hope you find something that will work for you again --
emory
Posted 10/3/2008 1:33 AM (GMT 0)
Eliane - wishing you a good appt tomorrow!

Tonight I went to a lecture on IBD. I learned nothing. I did speak to the head of the Gastro Unit who did the lecture about my case. He knows about it. He thinks I am hitting a wall and need to consider 6MP. I did tell him I get anxious and tend to switch my routines too quickly. So for now I am sticking to the 2 canasa and the hydrocort enema at night plus the 12 asacol.

I really really DO NOT want to go on those high meds. I might start a thread asking if anybody with proctitis takes 6MP, etc?

Emory - how ya feeling?
Posted 10/3/2008 1:40 AM (GMT 0)

Wishful.   I don't know how long you have given your routine but I know Colazal and Rowasa enemas were working - very slowly but working, healing, less blood, etc.  Wish I could have continued but could not tolerate them as you know.

I am thinking my NP is going to discuss 6MP with me.  I may have to make some decisions here soon.

ElaineNY

Posted 10/3/2008 1:42 AM (GMT 0)
WishfulMA, I think I've seen posts from members with proctitis who take 6MP, but you should go ahead and start the thread, see how many are out there.

I'm feeling okay. Tuesday night and Wednesday morning weren't so great, but better since then. I would like to be improving faster, but keep trying to be patient -- it's so hard! I feel like I might be hitting a wall, too, and need to go up a level to Rowasa or Cortenema. As long as things don't get any worse, I'll give it another week or so.
Posted 10/3/2008 2:13 AM (GMT 0)
emory, it was definitely the higher dose of prednisolone that worked for me. I'm not sure if they make hydrocortisone enemas over here, i've never come across them, but the dosages would be different anyway - i think about 2mg prednisolone is equivalent to 10 mg hydrocortisone?
Posted 10/3/2008 2:14 AM (GMT 0)
my mom has been on 6mp for a very long time, I think around 12 years. It has kept her severe Crohn's in remission.
Posted 10/3/2008 2:59 AM (GMT 0)
Thanks, Sherri!

Elaine, good luck tomorrow with your appointment --
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