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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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Posted 9/3/2008 9:43 PM (GMT 0)
Well, I spoke to my doctor today about ongoing concerns that my flare was re-flaring (mucus, gut rumbling, then blood), that Canasa wasn't working and mesalamine makes me nauseous and anxious (I still haven't convinced him on the side effects). and that I needed help understanding my treatment options.

So he drew the standard treatment chart, then proceeded to panic me by suggesting things like Entocort (which I thought worked on the right side of the colon, not the left), 6MP, Humira, and all the big boys. I pray I'm not anywhere near there yet. Prednisone is pretty much out for me because of severe insomnia/anxiety and osteopenia.

My question, then, is, what are your proctitis stories? What has worked best for you? I've gotten hints of this from other posts, but would really appreciate hearing more. Of course I realize that the people who've had an easy course of it, or who've figured out how to get into remission, may not be monitoring this forum...

Thanks for any replies!
Posted 9/3/2008 9:44 PM (GMT 0)
P.S. The nausea and weight loss, especially around my period, is really the worst part of it all for me. I hope that's mesalamine.
Posted 9/3/2008 10:15 PM (GMT 0)
I have 21 cm. affected, but still procto-sigmoiditis. The difficulty in achieving remission is completely independent of how much of the colon is affected. That is, someone with stubborn, severe proctitis can be more difficult to get into remission than another person who has mile to moderate pancolitis.

Mesalamine in any form (Asacol, Pentasa, Rowasa) made me worse - more D., cramping and bleeding. Colazal helped a little. Steroids added helped a little, but then I was unable to get off them without flaring badly again. Immunosuppressants helped me very minimally. Finally Remicade got me into remission. I know that seems like a really big drug for a pretty limited area of inflammation, but then colectomy would have been a pretty big surgery for that same inflammation, and I was really sick.

I hope you'll find your right combination soon. I just want to say that for me, the benefits of the "big" drugs far outweigh the risks. I've got my life back, and I was on the verge of having to go on disability. Now I eat what I want, go where I want, travel and live a normal life.
Posted 9/3/2008 10:44 PM (GMT 0)
Wow, thanks, Judy! How long did you have Remicade treatments? Did you have any side effects? I'm still not ready to go there, but it helps to know it has worked for you.

emory
Posted 9/3/2008 10:57 PM (GMT 0)
emory - You said - 

mesalamine makes me nauseous and anxious (I still haven't convinced him on the side effects).

Well, I can tell you they did the same for me and more.  I have a call in right now for help to find the next step.  I have proctosigmoiditis and doc says it is mild but nothing is stopping the blood or occasional cramping, etc.  Hope you (and I ) find the answer before the "serious" stuff like steroids and surgery.

ElaineNY

Posted 9/3/2008 11:57 PM (GMT 0)
Hi Elaine,
I know, I've been following your trials, but haven't had anything to contribute because I've had so little support for the idea that mesalamine doesn't agree with me. Canasa did gradually get rid of the bleeding (took about 21 days), but it's come back, at least for now. I'm hoping that Proctofoam will help. I didn't use Canasa last night, and I feel much less nauseous than usual (though I still had dry heaves once this morning). I almost feel normal right now, except for that rotten tenesmus.

I hope we do find an answer! Let's keep each other posted.
emory
Posted 9/4/2008 12:07 AM (GMT 0)

My sensitivity to mesalamines seem to have accumulated and kept getting worse.  By the time I just had to stop them my bleeding is almost nothing, no cramping (sure hated that tenesmus).  Good that they worked long enough to ALMOST get in remission - even close enough for me if it would stay that way.  Unfortunately, I am sure I should get to full remission and remain there as long as possible with something like steroid enema or ?

I will let you know what my NP and GI doc come up with next.

ElaineNY

Posted 9/4/2008 1:33 AM (GMT 0)

Surprisingly enough I lost my colon due to that darn last 3cms of tissue!  Meds just didn't work. I know it's hard to believe but it can be tough to treat.  I wish you well.

Sue

Posted 9/4/2008 2:07 AM (GMT 0)
Amazing. Scary, too, but it's good to know what can happen. I've already got 15 years of yoga behind me, and am having my first acupuncture treatment tomorrow. Funny how paths converge.

I hope living life med-free means living the good life, Sue!
emory
Posted 9/4/2008 5:40 AM (GMT 0)

This may likely have to do more with your periods, or even the combination of the hormonal activity of your periods in conjunction with the mesalamine.  Period time can definitely be an exacerbation of symptoms because of the hormonal role, even those with IBS tend to have more activity during that time of the month.

I tend to have success with cortifoam, but everyone is different.

:)

emory said...
P.S. The nausea and weight loss, especially around my period, is really the worst part of it all for me. I hope that's mesalamine.


Posted 9/4/2008 1:13 PM (GMT 0)
When I am flaring, my periods do tend to make my symptoms much worse.

I can't offer you any advice as I find Salofalk supp works extremely well for me.

Hope you find something that works for you.
Posted 9/5/2008 3:28 AM (GMT 0)
Is cortifoam different from proctofoam? I just started using proctofoam instead of Canasa suppositories. Hope it will do the trick...

Thanks, all --
Posted 9/5/2008 3:59 AM (GMT 0)
Hi Emory,

I don't want to be negative but want to share what I've been through.  When I was first diagnosed 12 years ago, I had left-sided UC.  Then about 5 years ago, my GI did a colonoscopy and all my colon was fine, but I had UC in my rectum.  Unfortunately, since then I have not had healing in my rectum.  The ulcer got so bad it was one inch deep at one time.  Then on Remicade it almost closed up but unfortunatley it lost its effectiveness and then I was taking such a large dose I had a reaction.... Then I got on Humira but hadn't seen much improvement so I am taking 6MP in addition..... By the way I can't seem to tolerate ASAs, Entocort, rectal meds and probably others I cant think of right now.  So my advice to you is to keep up on your scopes because I had no idea I got that bad.  Also I was very scared of taking 6MP and all that time avoided it.  Well it take 3-4 months for it to really make an improvement so I could have taken it before starting Remicade and maybe I wouldnt have needed to take Remicade. 

Posted 9/5/2008 1:25 PM (GMT 0)

emory said...
Wow, thanks, Judy! How long did you have Remicade treatments? Did you have any side effects? I'm still not ready to go there, but it helps to know it has worked for you.

emory

I've been on Remicade for 2 1/2 years, and will be on it for as long as it keeps working. It's intended to be a maintenance medication; in fact about half of people who stop taking it aren't able to start again when they go into flare because they don't tolerate it the second time around. Chronic condition = chronic medication. I went from 25-30 times a day to about three, from bleeding constantly to no bleeding at all, from feeling like I had razor blades going through me to no pain.

The only side effect I've had is mild tiredness the day of the infusion. My immune system laughed at all the "lesser" drugs, and it's still very strong. I've had one cold since being on Remicade, which cleared up within a week. No other infections or problems.

 

Posted 9/6/2008 9:17 AM (GMT 0)
Emory...
I am sorry you are having this much trouble. I am in the same boat. I have about one inch of my rectum infected. I was diagnosed 3 years ago, put on asacol and was fine. Got pregnant in November (jumped off my meds prior to that) and when I miscarried in January had a severe flare up. Nothing I did helped! I was finally hospitalized. Since then I have been on and off prednisone. UNFORTUNATELY we just came the conclusion that I am dependent on them. I am flaring right now and have tried all combinations of rectal meds.

So I have switched BACK to asacol (12 pills a day) and have started using cortifoam 2x a day. I have done the cortifoam since Tuesday and just started the asacol Thursday. STILL no improvement! I am not sure if I am waiting long enough. I am scared too of stepping up to the big boy meds, especially since I am trying to get pregnant.

I wanted to bump this thread to hear of more success stories!
Good Luck and I am RIGHT here with you!!!
Posted 9/6/2008 5:19 PM (GMT 0)
WishfulMA,

We'll figure this out, right? It feels good to know you're here with me. (ALL of you!) I am doing a little better since stopping Canasa and switching to Proctofoam -- still seeing blood and mucous, but only 2-3 BMs a day, and at least I'm not nauseous all the time.

I'm trying acupuncture, too, and have great hopes for it. My practitioner is fabulous. She said to me straight out, "We're going to get you in remission." I love her for that. Unfortunately, my insurance doesn't cover it, but what price health?

I hope you're starting to see some improvement with the Cortifoam and Asacol. Hang in there, give it a little time.

Good luck to you, too, and all my best --
emory
Posted 9/25/2008 8:40 PM (GMT 0)
emory...how are you feeling?
Posted 9/25/2008 11:24 PM (GMT 0)
Hi Emory,
I saw this when you first posted it and was going to reply and didn't. Then I was admitted to the hospital and had to stay for a while. Before I went to the hospital I was under the impression I had proctitis, because that was my diagnosis last January after a colonoscopy. During my hospital stay, I had another colonoscopy that revealed I have pancolitis (entire colon inflammed). So my question to you is - have you had a recent colonoscopy to see if you really have only 3-5 cm of inflammation? I was using rectal meds, but obviously that wasn't enough since the inflammation had spread since my last colonoscopy. I don't want to scare you by suggesting that your inflammation has spread, but its something to think about if your current rectal meds aren't getting the job done.

Good luck and I hope you find some relief soon!
Posted 9/26/2008 12:00 AM (GMT 0)
Hi WishfulMA and Katie --

Katie, I have only my June sigmoidoscopy to go on, but at that time, the doctor said everything looked great above that 3-5 cm, and the biopsies that he took higher up were also normal. I've never had a full colonoscopy. (They tried four years ago, but everything lower down looked fine, and I had some strange bend around the hepatic flexure that the scope got stuck on and even under sedation I was screaming, so they stopped there.) My symptoms seem mostly proctitis-like right now -- blood, mucous, some urgency, but no diarrhea and only very minor cramping. But I am definitely keeping that possibility in mind. I'm sorry to hear that yours is now pancolitis, and that you had to spend time in the hospital. I hope your flare will soon be under control.

WishfulMA, I think I'm feeling better, but I'm very tired this week (as compared to last week, when I was only using Proctofoam yet had a lot more energy). Number of BMs is way down, and they almost look normal in size/consistency -- except of course for the blood streaks and mucus. But I'm still bleeding quite a bit, turning the bowl red every morning for the past 3-4 mornings. I'm trying not to let that worry me too much (I'm way too prone to worrying!). How are you feeling?

emory
Posted 9/26/2008 12:05 AM (GMT 0)
emory, I'm wondering the same thing. I canceled my surgery for last Tuesday b/c my c-scope showed only 4 cm of inflammation. I've been on rectal meds for the past few weeks and it has not made a difference! Now my GI wants to see me and figure out what to do next (again). It seems ridiculous to me to pull out my colon for just 4 cm!

Posted 9/26/2008 12:17 AM (GMT 0)

I read all the posts in this thread!  Yikes we are really giving our doctors a workout.  Emory went from Canasa to Protofoam and now my doctor wants me on Canasa again.  I will try tonight and if I get sick I will stop until my appointment next week.

I do know (but remember I am 68) I would not consider surgery unless my condition was life threatening and nothing else could be done. And I would get a second and third opinion to do that. Just me! Every day I have to remind myself how thankful I am I did not have this disease when I was young!

Hugs to everyone,

ElaineNY

Posted 9/26/2008 12:56 AM (GMT 0)
Elaine, I hope Canasa will be okay for you. I seem to have only minor side effects from it. Wish it was working faster, though.

ComedyDork, I had no idea you were so close to surgery! Have you previously had pancolitis? What symptoms have you been having? This proctitis is crazy stuff...

emory
Posted 9/26/2008 2:58 AM (GMT 0)
I was fine for 2 days and then this morning had blood. So today I did the canasa 2x a day and about to do my hydrocortisone enema. I am seeing my GI tomorrow and I am going to ask for a colonoscopy. The last one I had was in Feb. I did have a flexsig in March and then in July. And they said everything above that inch was okay...but I am too nervous and want to make sure.

I am just sooo lost about this whole disease. I did swtich to Gargen of Life Primal Defense Emory. YOu only take 1 capsule. i thought it said to take 1-3.? How did you decide to do the hydrocoritsone suppos vs. an enemas?
Posted 9/26/2008 3:10 AM (GMT 0)
The suppositories were what my doctor prescribed. I can't believe I'm saying this, but I kind of wish he'd prescribed the hydrocortisone enemas -- maybe something stronger would get this under control faster.

I only take one capsule of Garden of Life Primal Defense Ultra because when I started it, I was feeling really sick and wanted to work my way up gradually. I probably should be taking at least 2 by now. I haven't noticed any improvement from it, but all of my treatments have been changing so frequently, it would be hard to pinpoint what's helping, if anything.
Posted 9/26/2008 1:34 PM (GMT 0)

I know what you mean, Emory.  I don't quite understand when those on this forum talk about their choices of medicaton, etc.  As for the prescribed medication I have been following my doctor - not deciding on my own which to take, etc.  I am waiting now for an appointment to map out the next step with my doctor.  I don't feel educated enough to dictate to my doctor what medication or form of meds I should be trying. 

As for the Primal Defense - tried to take it twice and gave me way too much gas (just one a day).  I am now on Align - different type of probiotic but helps stool formation I am sure!

ElaineNY

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