bad days

At my last appointment my doctor said she thinks I have some IBS mixed in and told me to start taking lomotil every day to slow things down. I'm taking two before bed, which the pharmacist recommended, because after a few hours it wants to knock me out anyway. Who knows if that's doing me any good since I don't have problems when I'm sleeping to begin with.

Almost feels like it's doing its job for a while and then my body has to go into catchup mode. One evening last weekend I lost count of how many times I went to the bathroom (normal, solid pellet style) but I was at home and it was no big deal.

Yesterday I had an official "bad day" which is my polite code for a day at work where I spend more time in the bathroom than at my desk. Full blown with stomach cramps, wanting to curl up on the floor and pass out... (although still solid, almost hard to pass, still don't have a word for that if it can't be called diarrhea.) After I slept in my car at lunch the office manager said they noticed I wasn't feeling well and asked if I wanted to go home. Ended up declining because I had too much to do, plus the horrible irony has always been to go home I need to be feeling well enough to not need to go home! (In other words able to make a 20 minute drive.)

Mostly ranting because I'm so frustrated... days like that make the good days seems pointless if I can't count on them. I try to figure out why as if I if I figure out the reason I can keep it from happening again... didn't eat anything offensive for dinner, didn't eat anything offensive for breakfast, drank too much tea but I do that every day, had a stressful day the day before covering for a coworker but the idea that I could make my job stress-free is laughable.

My doctor's switching me to Apriso from Lialda. I haven't started yet because I want to use up my Lialda - I hate wasting all these pills unused (plus the money spent on them). Now I feel like it's my last chance at a "magic pill" that's going to cure me. Next I assume is the Remicade, which will cost thousands, even with insurance.

I want the surgery. I want it done. I'm emotionally ready, I just need to be physically/financially/and otherwise life-wise ready. And to convince others of that too.

I had another one of those days on Monday, so there goes my theory of it being caused by work stress the day before. Then the unwritten rule says that a bad day is never followed by another (either because of the Immodium working overtime or I'm just plain cleaned out.) So yesterday, while it didn't qualify for the title, it had its own kind of special situation.

I went out to pick up lunch, and then to kill time and exercise I went for a walk. (I so miss taking walks.) Then maybe five blocks away, I got the 'better not push it and head bad' feeling from my stomach, which turned out to be a three second warning before it turned into full blown stomach cramp urgency and a panicked rush back to my car. I didn't even push it to see if I could manage to mind-over-body two goals (getting to my car, and then driving back to work) and just went for my emergency kit that's never been used before - one of those reusable/disposable containers (for storing food normally) with a spare pare of underwear.

So I pooped in my car... well in a sealable container in my car... but still... it sounds so absurd and so normal at the same time. But a definite example of not wanting to live my life like this. My fear isn't so much it happening again, but that next time not being within five minutes of my car, or while wandering the streets of a foreign country where I don't know the language or their public bathroom access policy. (My husband is hoping we can go to a wedding in Switzerland next year.)

Yeah if I could get into a real remission, one that didn't have me thinking about the disease every day, I'd be less adamant about future surgery. My husband asked me last night, "aren't these meds supposed to be making you better?" Well yeah, that's the idea... but it's not... and it looks like this forum is full of people going through the same experience - meds after meds to find the ones that work, if any.

Started Apriso this weekend so there's one more chance. I tapered the enemas to a few times a week - as many days as I'm up for during the week so I can have weekends "off". It almost seems like I feel worse the days after the enemas - is that possible?

I'm not on any anti-anxiety meds except that the anti-spasmoidic is supposed to be half anti-anxiety. I just don't think any pill is going to help what I consider a legitimate fear. It's not like I'm afraid of getting hit by lightning on a sunny day.

Have you ever tried pred or steroid enemas? If you haven't, I think it would be worth trying one of those. Sometimes you just need that kick of steroid to gain remission.

Editing to add:

Ok, I see that you are on entocort.  Maybe you need pred instead of entocort? 

Well I've been on the lamotrigne and pantoprazole forever, in comparison to the disease. I'd like to get off the pantoprazole but I was taking it for acid reflux that caused constant nausea instead of of heartburn, and I don't want to go messing around with stomach issues until I'm stable. Maybe it's worth a try - if the nausea comes back at least I know why.

Won't touch the lamotrigne. It makes me not-crazy and I'm not messing with that.

The thing is I'm not having actual diarrhea. I *have* improved since I was diagnosed but not all the way. It's more like firm ping-pong ball sized lumps, kind of slimy (since I was so up close and personal yesterday), but when you throw in the stomach cramps and urgency it doesn't matter what's coming out in the end.

No blood. I rarely bleed and when I do I'm pretty sure it's hemorrhoids. That almost makes me fear I've been misdiagnosed since bleeding seems to be such a prominent symptom for UC.


Food... breakfast is a chocolate peppermint Luna Bar (the only thing my stomach will tolerate first thing in the morning) and probably a banana. Lunch is usually some kind of soup and salad combination. (My coworker keeps getting on me for eating salad but I haven't found any food connections.) Dinner is a variety, because I like to cook, especially fish. Occasionally pasta... rice....


I feel off my fiber schedule recently so I'm trying to get back on it - now one (generic Metamucil type) capsule with breakfast, three with lunch, and a chewable Fiber Choice before bed.

Meh, so many variables.... diet, meds, enemas, other meds, stress, did I mention other meds?

Also forgot in response to an earlier post - I was on Imuran, until I ended up in the ER with what I thought was bad prednisone withdrawal (extreme dizziness and fatigue for over a week) but they told me it was likely a buildup of the Imuran in my system. Doctor didn't think that was the issue so I took it again after a weekend off and had the same reaction. (Spending too much time in the bathroom, when my coworkers know about my disease, is more acceptable than passing out at my desk) and haven't taken it since.

Wow, I'm starting to feel guilty at all the sympathy I'm getting. I don't feel like I'm in a real flare, but neither am I in remission. (UC limbo. Colon limbo? I need a catchy name.) I mean, I only went twice yesterday, perfectly acceptable number-wise but one of those times happened to be very sudden and inconvenient!

Remicade has been mentioned but I think my doctor isn't done with the mega-pill approach. (Those Apriso are *huge*!) I asked my insurance and they cover 20%, which at the costs I've seen would still leave me with thousands to pay. $700 deductible and $3000 out-of-pocket maximum so if/when i go that route I just have to accept that I'm paying $3700 a year for treatment.

Since my doctor okay'd Immodium I think I'm going to try that daily instead of the lomotil, which I know is having its own side effects. Immodium just makes my stomach happy and normal. ^^/

Actually I've said I'm going to do a lot of things in this thread - one change at time! I've learned my lesson.

That's too bad Hoshi. It sounds like you have tried a lot of options and none are geting you where you want to be. If you're only going 2x a day but the problem is mostly urgency and inconsistency, perhaps you could try some more rectal medications. As fruitgirl said, steroid enemas or cortifoam enemas may be worth a try. I can understnad your frustration and the desire to have surgery. For me, the worst symptoms are always urgency and frequency. When I am dealing with either of those 2 symptoms, I understand why people opt for surgery.

Why are you only using the Rowasa a few times a week? When I feel a flare coming, I hit it hard, Rowasa before bed, Canasa in the morning. If that doesn't help, it's time for the steroid enemas.

I am with you on prednisone, after the weight I gained and the way I felt on pred, I don't want to ever take it again if I can avoid it...