Blood and mucus - comes and goes

For the last 9 months, I have issues that come and go. I don't have much diarreah, mainly mucus and blood. I am pretty exhausted for a few days and then everything seems to go back to normal for a while. It doesn't seem to matter if I increase the asacol (I'm currently taking 9/day) or add enemas. It goes away regardless of what I do. But it also always comes back - sometimes a couple of weeks later, sometimes a month later.

Does this sound familiar to anyone? Any advice?

Early on, I called my GI and talked with the nurse to get enemas. She had me increase the asacol as well and to call back if it didn't get better. It did get better, so I've just been trying to manage it on my own. I haven't called again because I don't want to go on Pred. But I am now considering calling again to see if I can get an appointment to discuss with him face to face.

I appreciate any input you may have. Thanks.

Meds:

9 asacol/day
Rowasa once a week

Thanks. I'm thinking the same.

No, I have not tried Canasa suppositories. In fact, my GI doesn't think rectal meds are of much use for me since my UL is throughout the entire colon. I pushed to get the Rowasa because I wanted to try it. I can certainly discuss it with him.

Asacol had been working very well for me so far, but I guess that could change?

tjf43,

Hope you get into remission again soon :)

Let us know what your GI says.

I'm hoping that you're on nightly enemas...for at least 3 weeks or more if warranted. I was once on nightly enemas for 4 months...

How many bms do you have daily? You say not diarrhea..is that meaning explosive? or are you having small amounts of "stuff"?

It still sounds as though your symptoms are more rectally limited at this point. Regardless of you having your UC throughout, there is a progression of inflammation, which starts at the rectum and continued upward.

Since you are on Asacol, you would be covered above the sigmoid, but you might have to increase them to 10 (5 twice daily) or maybe even 12 (6 twice daily or 4 thrice daily).

How long were you on the enemas nightly?

I would give them a much longer time in all fairness. If you aren't getting any worse on the enemas,continue with them.

Don't go on pred if you don't want to...

A direct discussion with the doc seems warranted, but be prepared with a plan or alternate plan and touch base with him in a few weeks to tweak it if needed.

It's not an all or nothing...

And regarding rectal meds not helping pancolitis as per some docs, that's a load of crap since we all will have our rectums involved.

I don't get why that's such a freaking hard concept to understand.

q

You need to go back to them nightly at this point.

Definitely continue them...you tapered too suddenly to once a week.

I don't see a biggie regarding your setback...simple solution to resume the enemas.

q

Been there done that many times regarding tapering too quickly (tried different tapers and discoverd my butt rules on that one, can't hurry it up at all)..especially in the first two years. It took a while to be able to use the meds effectively..

Keep ys posted how you're doing.
q

You're welcome! Happy to hear you're feeling so much better.

Just remember it's not an all or nothing...it should only take this long and not that long...etc.

Your butt rules, and my hope for you is that you're able to use them forever rather than resort to any other meds next in line.

It takes commitment, juggling regarding scheduling and options regarding different rectals, orals, etc....

Thanks for the update...please tell your doc to share your success with others and encourage patients to try that route initially instead of discouraging them otherwise. It puts power in their hands and minds for a way to do for themselves. It also helps accepting living with UC and realising it doesn't have to be debilatating.

If it helps...do it.

If not, at least it was tried and another avenue needs to be found.

I want to also encourage you to use fibre supplements and probiotics.

q

Is it true what's mentioned by someone in this thread, that UC tends to begin in the rectum and then progress further into the colon?

Sorry for all the typos - was only phone

For 10 weeks I've been doing nightly enemas along with 9 asacol per day and have had no further problems. I had my colonoscopy this morning and everything looks great! The doctor suggested tapering off the enemas - 3x per week, then 2x per week, then nothing. I suggested staying on them at least once per week and he said that wouldn't do much. Any thoughts? I have a followup visit in 3 months, so I plan to do some research before then. It does not seem like a good idea to stop altogether.

Any thoughts or resources on the topic that may help? Thanks.

tjf43,

I agree with hateuc, you would be better off staying on some form of rectal meds at least 2 x per week.

But I don't understand, your colonoscopy came out fine? No UC?

Also, have you had any urineanalysis and blood work to make sure your kidneys and liver are working properly from all the mesalamines?

tjf43,

Ok, I understand now about the all clear.

It's good you get blood work, but it may be wise to do a urineanalysis as well - which your GP can probably do.

With the high dosage of mesalamines, there was another poster here, who had problems with his kidneys.

InSoFla, thanks for the advice on the urineanalysis. I will talk with my GP about getting that done.

Quincy, he basically said one more month for the enemas. He said enemas 3x a week for 2 weeks, then 2x for 2 weeks and then off. He told me to stay on 9 asacol until I see him again in 3 months.

I have been looking for some studies that I can take with me when I see him in 3 months because I plan discuss this with him further (when I'm more alert than I was after the colonoscopy). If he believes that it is important to use asacol for maintenance and that asacol does not reach the entire colon, why would it not be important to use the enemas for maintenance as well? It just doesn't make sense to me. Luckily, I have just enough Rowasa to keep me at 2x a week until my appointment.

Thanks!