Finding it difficult to achieve remission ( proctitis sufferer)

Hi everyone,

I've been reading so many posts on this forum these past few months and thought it would be a good idea to join the club after getting a lot of helpful tips.

I was diagnosed with mild proctitis (4 cm inflammation) in 11/2013 and was prescribed Canasa suppositories. I was on them daily and they worked very well to get me into remission. Then last April, I had a very bad flare...canasa wasn't working, had another colonoscopy and the inflammation went from 4cm to 14cm. I was then prescribed 4 Lialda pills and a budesonide / mesalamine combination suppository..things got back to normal again but then I started flaring again in November. Again, the full rectum was inflamed and I was given a choice between prednisone and hydrocortisone enemas. I opted for the hydrocortisone enemas and they helped for sure... I've been trying to taper off the hydrocortisone enemas by alternating with the mesalamine enemas but am having difficulty getting off the steroid enemas. I feel like the mesalamine enemas aren't as effective...for some reason, since last week I've been having flare up symptoms again..not sure if it has to do with the tapering or something I ate. Is it possible that mesalamine just doesn't work for me anymore? I'm also finding it very difficult to figure out what is causing my flares. I keep thinking it has to do with something I ate but my doctor says diet has nothing to do with it...not so sure that is true. I know long term use of a steroid isn't a good thing at all.. wanted to see if anyone has any tips to help me finally get back to the non-steroid meds long term. Any advice? I'm taking one packet of VSL#3 DS everyday too and have been taking turmeric ( root & capsules) on and off these past few months. Also, the flare up last April was so bad that it actually led to IBS as well. So now I'm dealing with both IBS and IBD..sigh.

The initial 5 years after diagnosis is usually when ulcerative colitis (and your proctitis) are the most aggressive and it can spread in extent and severity (which it sounds like it's doing). It's important that your medications keep pace with your disease progression and severity. Based on what you describe, canasa isn't a powerful enough anti-inflammatory medication to tame it anymore. You keep going back to steroids, they're dangerous, and aren't meant for long-term, maintenance medication use for uc. Time to mix up your prescriptions and try some new things. I would ask your gastroenterologist about the next class of medications, immunosuppressive medications (Imuran, 6mp, or aza).

What? Your doctor removed your oral Lialda meds after your last scope and you were only on enemas?
Well there's your problem. If your inflammation has moved higher you need oral RX plus enemas.

Am not understanding your comment about tapering with mes. enemas and Lialda pills. You mean staying with them and tapering off steroid enemas right?

Constipation: try adding a fiber pill while reducing your fiber intake with foods, esp. insoluble fiber. Also resistant starch (potato starch, potato salad) does wonders to make my colon happier.

Yes, that's correct... when I was flaring last November, the doc did a sigmoidoscopy and saw most of the rectum inflamed ( except a little patch ) and I specifically asked if I should still take the Lialda pills along with the steroid enemas but he just shook his head.. I guess he determined that the pills were not helping at all and it was time to put me on pred or the steroid enemas only. But I agree, even if I have inflammation only in the rectum.. I don't know if it was a wise idea to get me off those lialda pills.

And yes again.. I'm wondering if it's time to try alternating the steroid enemas with ( lialda pills + mesalamine enemas) once things are much better to see if that actually helps. And if it does, to eventually wean off the steroids...I'm very unhappy with how things are progressing at the moment and am worried about being on these steroids for so long.. I can already feel the side effects of the steroid enemas since I've been on them for about 5 months now and really want to get off of them asap.

Actually, the only time I was asked to cut back on meds ( lialda) was last November... in fact, when I had the bad flare up last April, my doc told me to up the canasa from once a day to twice a day to see if helped. But at that point, even taking it twice a day just didn't work.

Thanks for the tip regarding the fiber pill.. is there any brand in particular you recommend? I've been taking miralax for the most part... but recently asked my doc for something that would help bulk the stool..was told to try part miralax / part metamucil but not really sure if it helped or made things worse since my recent flare up was right around the time I tried out metamucil.

This is not good treatment and if you current doc isn't willing to give RX for oral meds get another GI. You are being under-treated. Prednisone (and other steroids) are used to with a UC RX med to help get you into remission. Just taking a steroid is not right. The goal is to calm your colon down so that the UC meds can take hold and get you into maintenance which means continuing RX.

Steroid enemas are not quite as bad as oral steroids because they are topical (on the area) not systemic (just a little systemic). But you need oral mesalamine in some form if your symptoms are still there. Yes some people can be treated with just enemas and Canasa suppositories but if that's not working you need oral meds.

Fiber pill: some people like psyllium-based fiber pills (there are psyllium seed and psyllium husk types to choose from) but my gut has always disliked that type. Citrucel (the unflavored pill) is what I take, which is available generic. You have to try each one and see what works best for your gut. Start with one daily and see how things "go".

Good luck.

Thanks for all the responses... I agree with all of you. It definitely seems to make sense.

I was thinking back to just about 2 months ago when I started to taper off the steroid enemas by alternating with the mesalamine enemas....things would be ok for about a week or so but then I would start having symptoms again ( this has happened twice). I kept relating it to something I ate but it probably had to do with the fact that just taking the mesalamine enemas wasn't good enough to keep things perfect. I will talk to my GI again about adding the oral pills back into the mix. Now I really have to wonder why he wanted me to stop taking them when it seems like it is the norm to treat this disease from both ends. I felt better after taking the steroid enemas for a few months but again wonder if remission would have been achieved quicker if I was on the Lialda pills the whole time too.

Also, I scheduled an appt with another GI today and the appt will be in a few weeks.. I'm sure another scope check is coming up too.. I think I need this for peace of mind.

Hi everyone, just a quick update.. a few weeks ago, I told my doc that I was having difficulty getting off the steroid enemas and asked if I could add the 4 Lialda pills back to my daily regimen. She said yes, let's see if it assists you in getting off the steroid..and also mentioned that if I'm unable to, then we will need to talk about the next medication to help me stay in remission. My first attempt at tapering with the mesalamine enemas was last week.. but I noticed that the very next morning there was gurgling / rumbling in the rectal area and I was pretty constipated.. had about 2-3 movements in the morning, little bleeding and then for the rest of the day had mild rectal pain. Then back to the steroid enemas I went.. things were calm again.. so I decided to give the mesalamine enema another attempt last night. Today morning I noticed the same thing...gurgling / rumbling and was very constipated ( barely any stool) again during the first movement... then had 2 more movements in the morning with formed stool ( about half hour apart)... bleeding this time again.. no pain, etc for the rest of the day.

Is it possible that mesalamine enemas cause constipation.. I would think that they would do the opposite but wanted to find out if anyone has experienced this before? Or do you think this is a sign that the mesalamine enemas are just not effective in my case? I usually take miralax daily but the last few days I've been taking metamucil... do you have any advice of what else I could try? Diet wise..I completely avoid white flour since it seems to cause trouble ... and generally follow a high fiber diet. I know imagardener2 mentioned Citrucel which I haven't tried yet..I think I might get that tonight and see if it helps..

Post Edited (LookingForAnswers7) : 6/1/2015 6:34:06 PM (GMT-6)

I personally would give the enemas more time and only quit them if they are making things go downhill badly. A little constipation would not be a reason in my book. Add a daily fiber pill (I used to take 6 Citrucell/day when things were bad but now down to 1).

When many things are changed at the same time it's hard to put a finger on the problem or the solution.
If you weren't allergic to mesalamine enemas in the past they should not cause problems.
You also need time to see if Lialda plus enemas will get you back to a good place.

If things do head in a bad direction at least your GI is prepared with higher level meds. But I've always tried to do whatever possible to keep from moving up the med ladder even though many people do fine with 6mp/Imuran/Aza.