Question for Quincy (from the Mesalamine Queen)

Alternate title: Quincy, be my gastroenterologist!

I'm writing you about my dilemma for two reasons: 1) We have some significant overlaps in our histories/ideas about UC (I have also only ever taken 5-ASA-based drugs, and am a big fan of Rowasa enemas; I think it's great you encourage people to use them, and appalling that more GIs don't; and I am hell-bent on avoiding any other kind of drug if at all possible); 2) I've been interested in some comments you've made in other posts around the diet issue, to the effect that experiencing flare-type symptoms overnight means there is already some low-grade inflammation going on.

I've posted about my rather nutty situation once before, awhile back, and I find it almost embarrassing to write about b/c I am sure it speaks to my own, um, risk-averseness? Paranoia? You may decide.

The bottom line is, I take 16 Asacol + 2 Rowasa enemas a day and have now for about 6 yrs. The story was: a fairly mild first diagnosis (the dr.'s report says the proctitis was severe, but my experience of it was really not as ever so bad; I never had cramping or many stools a day, etc.), followed by 7 years of complete remission (on enemas + Asacol, then just 6 Asacol); then what I experienced as a much more "real" flare after an idiotic move (sanctioned by a GI!) of going off all my meds to breastfeed after childbirth (even though even that flare was still not so bad compared to a lot of what I read about on this site-- maybe 8 poops a day, tops?), MANY threats of imminent pred from my dr. during the 2 months it took for the Asacol to kick back in, then remission again. The 16 Asacol is the result of my total panic during that time, trying to ward off the pred prescription; and the 2nd, daytime Rowasa was added in when I saw some blood pop up again about 6 mos. later.

I never intended to keep this crazy regimen so long. But first there were about 3 yrs of major life traumas of different sorts (deaths, etc.), during which it was enough just to keep my head above water, and then in the past 3 yrs, I've just had increasing symptoms of this nebulous kind, sometimes worse, sometimes better, but never gone: the burning pain in sides and lower back, rectal ache, bad gas, typically loose stool, on-and-off urgency issues etc.—albeit never with any blood or more than 2 poops a day. Sometimes I can't help thinking of it this way: it's as if my body at times WANTS to flare but (b/c of all the mesalamine) it can't!

Although I, like you, have been wary of diet-related fixes, I did realize dairy became over the years a pretty reliable trigger of these kinds of symptoms and have tried over the past 9 mos. or so to cut it mostly out; also most caffeine. VSL3DS has been helpful also. I have a dr. who (like any sane person, no doubt) thinks that, because what I am experiencing does not sound like a "flare" to her, I should be gradually decreasing my regime, starting with doing a Canasa instead of a Rowasa during the day. Believe me, it's a lovely idea! I was really very ready to start it in the new year, but then—of course—I've been going through an especially bad patch again since Jan. 1. The fact is: I would feel most comfortable cutting down if I felt I was "really in true remission" the way I remember being from 1998-2005. And that meant not having any of these symptoms at all, or hardly ever, and eating anything I wanted. But perhaps as we get older, those kinds of absolute remissions simply become harder to achieve?

Reading this forum often spooks me about all this because SO many people on it have had to take the non-5-ASA drugs. I would so much rather take gallons of mesalamine than any of them. (Please spare me the posts about kidneys, et al.—I'm on top of that.) And sometimes I think that the overall downward course of things for me is a sign that if I did cut back, more serious flares and more serious drugs would be the inevitable result.

The main thing I'm wondering from you, though—aside from what you think you might do were you in my crazy shoes—is whether you think these symptoms sound like inflammation at all? I had a scope for the first time in 3 yrs last year—and while it was clear, one odd thing was my GI said there was some, what's the word, granularity? scarring of some kind that hadn't been there when he'd done a flex sig the year before, as if something HAD occurred in the interim, but there was no active inflammation now. Or is it just IBS? I guess that I can see gas and cramping as IBS, but that particular burning kind of feeling that's esp. bad in the lower back or rectum always feels more genuinely colitis-y to me.

Thanks for listening. I feel silly in some ways taking up so much space when so many people on this site have had such a harder time of it, but you can see why I feel like I need some advice! Or, who knows—am I a sign that more serious UC could be warded off, if people wanted to do it, just by becoming the Mesalamine Queen? (Let me say to any of you who've bothered to read through this post: seriously, I have NO problems with this regimen in itself-- I guess, obviously.)

Ilovefood my question is how to manage to insert 2 enemas a day? lol I find them easy to manage before bedtime but do you do one in the morning and one nightly?

It's not about how "easy it is to digest," really. Gluten is complicated to digest, and in a normal digestive tract it takes both enzymatic action produced by the bowel and bacterial action from gut flora. In an IBD tract, gut flora is often disordered (and perimenopausal women, too, according to the latest stuff I've read) and so the digestive process is not complete, leaving protein undigested and ready to irritate the bowel, create gas, etc. The results of going gluten free are not observable until some time has passed - typically 10 days to 3 weeks.

My friends had noticed that during the Passover holiday, when I ate little grain, I tended to feel better. I thought for a long time that had to do with the increased protein that I ate during that time, but after being really and truly gluten free for 10 days I was seriously gobsmacked by the changes in my bowel function and ability to concentrate.

Prior to this diet change I was not eating many processed foods (in fact I ate gluten "lite") and I certainly don't think additives were causing me to have loose stool and brain fog. The biggest change for me diet-wise was at breakfast - I love Raisin Bran and still miss it. Other than that, my main sources of gluten were pasta, pizza and really good bread. I've found adequate replacements for the pasta, I can live with an occasional gluten-free pizza, and so far I am not too sad about leaving out good bread. Since I adopted this change I have occasionally had a bite of bread or cookie and it's fine. Once or twice I've gone too far and paid a price for it.

Oh my gosh, ilovefood, your story sounds exactly like mine! (other than the baby part anyway).  I’ve had UC for about 17 years now and started out with a fairly mild diagnosis as well as ulcerative proctitis.  Started out with just Rowasa suppositories but as the years went on they said the disease has spread and I know had left-sided UC.  I had great deal of bleeding with my first flare and needed prednisone to get over that.  I then used Asacol (6 pills/day) and got in remission for several years. Whenever I noticed any blood used the enemas to get it under control.   Switched to Colazal (9 pills/day) about 6 years ago mostly due to concerns of hair loss from long-term use of the Asacol.  I’ve also been in remission for a very long time with no bleeding – over 10 years actually.  But during that time I too have had all the symptoms you describe, sort of like IBS symptoms but they do make me tired and give me joint pains – thinks usually associated with a  UC flare but I never have any bleeding.  I also started using the Mesalamine enemas nightly about 4 years ago when I was having those symptoms and like you said I’d rather take that everyday if it makes me feel well.  I also would take 2 enemas a day if I felt a ‘flare’ coming on – assuming it was a flare as I would never see any blood. 

 

All my scopes show like yours – no inflammation and just a few ‘patchy’ areas of pseudopolyps.  My new GI had me stop all my meds as he didn’t even believe I had UC and low and behold, like you, I got sick bleeding and all.

 

I’ve also had a lot of stressful life events over the past 3 years, in which each time I’d up those enemas to twice a day just to make sure I didn’t get that bleeding.  Sometimes I wonder if the enemas are causing some of the gas and bloating, or if you have IBS maybe the enemas can exasperate it?  I do have IBS as well, when ‘normal’ only about 1 or two BMs a day.   But I feel like the enemas do cause a lot of gas and that is one of their listed side effects. Its amazing how much pain gas can cause in your entire digestive track.  Gas-X is my best friend and I’ve been told you don’t have to limit its use to only 3 pills a day as its pretty harmless.  Also maybe the pain in the rectum is local inflammation or swelling, even hemorrhoids that are internal – I tend to get a lot of those myself and they always see them during a scope.

 

And I totally agree with you – I often feel guilty on here even posting as I am so lucky to not have had as many issues with my UC over the years as so many people suffer with on here. It doesn’t seem fair that so many people have to go through so much pain.  Just wanted you to know you aren’t alone and there is actually somebody with the same scenario as you! 

 

Nikki

ilovefood, do you find that your period causes you to get more symptoms?  I'm actually supposed to have mine in two weeks and I'm a little worried it will irritate my flare-up or maybe even set me back again while I'm trying to get better.  I have my period every 9 weeks (by taking back-to-back BCP pill packs) and that really seemed to help keep down on the IBS symptoms and worries of a flare.

I used to actually up my enemas to twice/day during the week of my period just cause I felt like it helped to 'ward off' a flare!

ilovefood, you really got me thinking about the other symptoms you are describing.  Just wanted to tell you that I do get those too - especially the pain on the sides and lower back and the rectal pain.  I do feel like the rectal pain is internal hemorroids or small fissues so follow quincy's advice on that. I may have to try those Prep-H suppositories myself, ddn't even know they were out there!

I get that feeling of needing to go also and then I don't have to - also think that could be related to the internal sores/hemorroids. Also, and this is just my opinion since I've dealt with this for so many years also, I think that some people's bodies are more sensitive to little movements in the digestive track.  Especially if you have any scaring in there from past flares, my old doctor would tell me that whenever anything moves past those it could cause pain. That would include the side pains or for me I get little stabbing pains in the abdomen now and then that sometimes radiate up to the stomach even.

I do take Levsin which seems to help spasm sometimes, I wouldn't say it always works, its like 50/50.  Maybe try that and see if it helps? 

Also with some of the other aches my GI said to try a rhumatologist so I am going to one in a few weeks.  We'll see how that goes. Apparently its common for people with UC or even IBS to have other auto-immune issues.

Quincy and MNBeachgal, thanks so much for your comments.

I may not have been clear. I have 1-2 bms a day, tops; only had as many as 8 way back during the 2-month flare (early 2006) that got me into this whole medication situation. Really, I currently have NONE of the symptoms drs. always ask about: blood, cramping, multiple stools. And my scopes have been clear (aside from the odd thing about the possible granularity to which I alluded in my original post, which my dr. was nonchalant about).

BUT I do have other symptoms—only off and on, and exacerbated by some foods, but not only by that—that I associate only with UC (i.e., I had them while flaring, did not have them when in "true remission" on a maintenance dose).

The reason I asked you about this, Quincy, was you seemed to think foods causing UC-type symptoms (vs. just IBS-type ones like gas or bloating) meant there actually was some low-grade inflammation somewhere. But I guess, if the scope showed none, I should just assume that indeed one can have these symptoms without inflammation, and start to taper?

The takeaway for me seems to me maybe that the kind of total remission I had from 1998-2005 is just less likely to happen when one is older. Though it is interesting to me you had a hysterectomy, Q. My symptoms are so affected by periods and ovulation that I often find myself longing for menopause. That, and the day I'll be able to get enough sleep again when my son grows up (though I don't really want that to happen too fast!).

I do take a lot of probiotics, VSL3DS, but the one thing I have not tried is psyllium. I think I will give the Metamucil a try.

Hey Q, Thanks again for bothering to take the time...

The granularity was only in the rectum, and the dr.'s line was it was just old scarring. The only thing that was odd was that he said he had not seen it when he did a flex sig looking at that same area the year before (when I was having a lot of rectal discomfort).

As I say, though, he seemed blase about it. The thing is, this paticular dr. never gives me much info. He tends to say "it's inflamed" or "it's not." My original dr. long ago (in another state) would give me long detailed writeups of every tiny aspect of each scope. But I am not sure I know what microscopic colitis is? Obviously the current dr. does do biopsies.

My original diagnosis was severe proctitis that then became mild/moderate left-sided UC. That was years ago, and all I remember really is the blood. I never had cramping or that many bms a day. Enemas were very key to my achieving remission then-- I used them for a few years even after symptoms stopped.

As I say, on an idiotic new dr.'s advice, having had a 7-year total remission, I went off my Asacol after giving birth b/c of breastfeeding concerns. He first put me on just Rowasa, which instantly helped, but then (again idiotically) I tried to start tapering it shortly after. All it took was one enema-less day and SHAZAM the flare was up and running, MUCH bigger deal than the first one—8-10 bms a day, tons of blood, cramping, the whole deal. After about 2 mos. and constant upping of the Asacol it finally began to subside and eventually disappear. about 6 mos. later some blood appeared again and I added the second enema, and have had no blood since (that was in fall 2006).

So you can see why I am attached to my Rowasa!

The question for me really becomes: Is it really such a big deal to take lots of mesalamine long term, if the payoff is never having been inflamed for very long and never having to take pred or any of the other drugs? I never thought it was, and some others have seemed to agree (i.e., Songlady's dr.-- I know she also takes 16 Asacol). But now there has been this whole new discussion about the Mayo clinic wanting people to get off it-- not really sure what to think. Doesn't my case suggest that the disease, as we know, tends to progress? Why would I risk an even worse third flare?

ilovefood.....ok, just to be clear.

you're on 16 asacol daily and 2 Rowasa enemas for 6 years.

No tapering process in those years at all?

I wouldn't stay on that amount of 5ASA because my thought is you have no where to go to up if you do flare.

I think you should consider a slow taper of the morning enema and replace the days you're not using it with a suppository.

The granularity...yes, it could be scarring, which makes sense considering that's the area that's the most reactive.

You've come a very long way from where you were initially...

q