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Ulcerative Colitis
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Posted 4/20/2010 3:40 PM (GMT 0)
Hey guys, first post! I've lurked here a bit and almost posted a few times, but mostly out of desperate, depressed need to connect to people. Luckily I've resisted and now I can actually post with an actual question.

When I first found out I had UC my symptoms were pretty basic - having to run to the bathroom from time to time, particularly after eating, with mucus and bloody stools, often diarrhea. I could suppress it much of the time by taking a belladonna pill before eating, I was also taking Colazal. It sucked, but it really wasn't the end of the world. By the time I managed to go through my various doctors, finally have a colonoscopy, and all of that stuff, I was already in remission somehow, and soon felt worlds better and cut all of my meds. I was 99% fine for a year, when all of the sudden my UC came back with a vengeance, possibly triggered by some intense stress I was going through at the time.

For the past two and a half years I've had non stop (with the exception of when being on Prednisone) symptoms that are a lot different than before. The main thing that is ruining my life is having to go to the bathroom ALL THE TIME. It waxes and wanes in severity, but it can be as much as 20 or more times a day, and it's like clockwork after (sometimes during) a meal. Sometimes it's pretty urgent, and it's often nothing but a little flatulence and mucus. Usually blood is minimal if present at all and the belladonna no longer has any effect. Like I said, the symptoms feel very different and this going alot issue has been by far the worst, life changing part of having UC so far, and is what I'm most concerned with for the time being.

My question/concern is that is this going all of the time thing part of my UC or could it be something else? Do many of you guys have the same symptoms? When I told my GI about that being a concern recently he sort of shrugged it off, saying that I might have some IBS in addition to my UC. That wasn't very reassuring or helpful. I have haven't had a colonoscopy or anything else but blood work (mostly to check on my anemia, I guess?) since my original visit 4 years ago which makes me feel like maybe he hasn't done enough to really investigate. I know I shouldn't second guess him so much but I'm starting to lose faith in my GI after having these same symptoms for so long, and his often kind of laid back attitude about the whole thing. I think he just considers my UC to be too mild to flip out about, and although I might not be having my colon removed anytime soon it is still affecting my life in major, major ways.

Thanks!
Posted 4/20/2010 5:14 PM (GMT 0)
Hi - Sorry for your problems!
Yes, running to the bathroom all the time is definitely a standard part of UC, and the passing of just gas and mucus (and for many of us, blood) is a normal part of it. O, goodness, the meals during which I've had to run to the bathroom...!
One trick I read about when I was first diagnosed is to stay absolutely still for a few minutes when that feeling first starts to come on - don't even talk... and also to stay still a few minutes after a meal to try to let things settle....
The gas is a sign of inflammation. And just as with babies, when we feed them and they quickly poop, our whole inflamed GI system gets activated when we eat - it's called the "gastro-colic reflex." So, something goes into the mouth and swallowed, the whole system does its thing, and there's pressure at the bottom of the chute.

Are you still taking the Colazal? How much?
The thing that might really do the trick for you is rectal meds. The pills help higher in the system but not all the way to the very bottom, so if you add meds from the bottom up, you've got the whole system covered, and very efficiently. I would say some mesalamine enemas would help you a lot - they're a 5-ASA, like the Colazal - and really, they're topical - like putting first-aid cream on a cut - so it's not like putting a lot more stuff into your system. (If you've been lurking, surely you've read about the enemas!)

If your doc doesn't take your distress seriously, it sounds as if you should go doc shopping. It helps enormously to have a doc with whom you can work, as a team. If you basically like the one you have, you could explain to him how you feel and see if you can get him to engage more..?
'
But, in any case, welcome, and I hope you find good support here! I certainly have, and I've learned so much from the wonderful folks here!
Posted 4/20/2010 5:46 PM (GMT 0)
Thanks for the welcome!

I guess, rereading my post, it sounds more like I didn't know that going a lot was even a symptom of UC. Really, what I was getting at I suppose is that my two sets of symptoms were so different I was wondering if it could be something else entirely.

I'm actually on Lialda at the moment - I was on Colazal originally, and Asacol when I first started this 2+ year flare, but I had a pretty bad reaction to it and switched to Lialda. I don't recall my exact dosage unfortunately but it is 4 daily. The only rectal med I've tried the entire time was corticosteroid enema which had a similar, but more subtle effect as taking Prednisone. That was actually the last thing my GI had me try.

I agree about going doc shopping. I've been considering it, if not at least for a second opinion.
Posted 4/20/2010 5:52 PM (GMT 0)
Your symptoms are definitely UC running amok! There are many variations of the disease and as it progresses the symptoms change and intensify, which is what you are experiencing. If your GI is allowing your health to be this poor without offering more in the way of medical management then yes, do find a new GI. It's best to get this flare reduced in severity so you can not only have a better quality of life but not have to resort to more potent medications.

Sue
Posted 4/20/2010 6:31 PM (GMT 0)
Pej - Ah, yes, I get a clearer picture now.
If you set up a signature and list your meds, it'll keep people from asking you what you're on all the time.
What I've found, and what a GI said to me (during my doc shopping) is that UC changes. The course of the disease can change, the particular symptoms of a particular flare can change. It's the nature of the beast and one thing that makes it so hard to deal with.

Have you tried probiotics or fiber? Both those things help me, but... we're all different; that's not the case with everyone. But those are two things you can do on your own and they might help....
Posted 4/20/2010 6:48 PM (GMT 0)
Yes, I should do that soon.

I had tried probiotic yogurt originally - it was one of the things I was doing when I went into remission the first time. This time around I seemed to have more of a negative reaction, probably the yogurt itself as I don't eat a ton of dairy. Coincidentally one of the companies I work for now sells their own probiotic pills and the product seems comparatively good (though a much lower dose than something like VSL. I think it was 4.5 billion) and since I can get them at a steep, steep discount I'm considering purchasing a couple of bottles very soon.

I had actually taken fiber supplements originally too, but again, it seemed to do little for me this time around.

It's funny you mention both of those, as when I hit this flare I optimistically thought "well, I'll just do everything I was doing when I went into remission last time and I'll be ok in no time!" and started taking exactly what I was taking then, which included fiber supplements, the probiotic yogurt, extra vitamins, belladonna pills for meals, and Colazal (though replaced with Asacol for convenience) and those each pretty much turned out to be a bust this time around, disappointingly.

Thanks for the reply!
Posted 4/20/2010 6:51 PM (GMT 0)
Yes symptoms change with UC, in my case starting out as an inconvenience and progressing to life-altering.
You were lucky to have that remission but now you know it must be dealt with.

Do as songlady rec'd and ask for enema (Rowasa) to help stop bleeding which says ulcers are there. That is very important. Not fun to do at bedtime but necessary. I am sooo happy I don't have to do them anymore since I got the bleeding stopped (I went gluten-free) but they worked when pills didn't for bleeding.

Yes doctors can be very blase. I know most of us wish they could live one day of our UC lives maybe they'd get a clue about what "urgency" means. Learn as much as you can so that you can partner with your doctor or at least know why they are prescribing a certain drug and what to expect. The truth is they don't know what works so they just go up the list of available drugs hoping you respond to something.

Meds (except Rowasa and steroids) never did anything to improve my UC but they seem to work for other people. You'll have to find out for yourself.

And as always I strongly suggest you keep a food journal, consider eliminating gluten and anything else that could be hurting your colon. Worked for me, I am 80% better than 4 months ago.

Best wishes.
Posted 4/20/2010 7:39 PM (GMT 0)
I'd look for another doctor.

I used to have IBS. The main symptoms were gas, bloating, and diarrhea. I would run to the bathroom to go diarrhea after eating something that I couldn't digest. However, I did not need to run to the bathroom so many times. The fact that you are going so often is a sign that your colon is inflamed. If it were my GI, he would perform a sigmoidoscopy/colonoscopy to see what is going on inside. There is no way of knowing for sure without taking a look.
Posted 4/20/2010 7:59 PM (GMT 0)

imagardener2 said...
And as always I strongly suggest you keep a food journal, consider eliminating gluten and anything else that could be hurting your colon. Worked for me, I am 80% better than 4 months ago.

Best wishes.

Thanks!

I've actually experimented with my diet quite a lot in the last few years, and while I've never completely cut out gluten (until now) one of my diets included a lot of gluten free foods. Of all of my experiments none of them came anywhere close to seeming like they'd send me into remission though several did seem to make me feel a tiny bit better. I may put gluten free on my to-do list. Right now I'm on an... almost everything free diet. I'm eating nothing but fresh fruit and some select fresh and steamed veggies, and drinking nothing but water. Again, though I generally feel better (in this case much better) my main symptoms aren't being relieved and that is what I'm after.

The tricky part is knowing how much of a trial I should give these things. I can swing a couple of weeks, but I don't have the patience to try an extreme diet for months on end without results. Does anyone have a clue how long is a reasonable amount of time to give these things?

Another thing I'm considering is the introduction of anti-inflammatory supplements as that appears to be another thing I can get for dirt cheap (both Omega 3 and another with turmeric and some other stuff) thanks to my job. I've noticed some people, including yourself, seem to take fish oil supplements. One of the diets I tried was a modified anti-inflammatory diet and it was one of the ones that helped a little, so that is encouraging. Plus, I have some back pains/issues so both of those might at least help there even if they don't do anything for my gut.
Posted 4/20/2010 11:33 PM (GMT 0)
How long to give a diet? That is up to you. I was pretty desperate because nothing else was helping and the SCD diet is a healthy one so I had nothing to lose except some extra time preparing food (and ordering some new stuff like almond flour because I love snacks).

The first time I tried the Specific Carbohydrate Diet I had no improvement (5 years ago). Guess I was more desperate this time having been through the med cycle for years. This time I really paid close attention and the minute I felt a food was wrong OUT it went. And this time the diet worked (modified by me). Not saying it works for everyone but I've read the SCD forum and it's working for a heckuva lotta people worldwide.

It isn't easy because the world is filled with bad carbo and gluten foods. They are cheap and tasty. And they murder my colon.
Now after 4 months I don't miss bread or ice cream or corn or anything on my OUT list because I feel soooo much better. Somebody (who??) said it here: Nothing tastes as good as feeling good feels. And I have tons of energy and better spirits.

Be a little careful with too many supplements at one time. You need to introduce them one at a time so you can tell which one might be causing problems. And make sure the supplements themselves don't have binders with carrageenan (bad stuff) or FOS or wheat, etc.

Good luck.
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