Update

After a week of taking the liquid mesalamine enema (I know a weeks not long) I just didn’t feel right. Stomach pains, really gassy, leaking mucus again, urgency, white layer on stool. Something was just telling me I was going backwards.
I emailed my consultant to explain my symptoms, asked whether I should go back on the steroid foam or if there was an alternative to the mesalamine as I have tried these in different forms before and never seem to get on with them.
He hasn’t contacted me back. So I’d exuded to go back on my steroid foam just to see if it made a difference and within a day I felt so much better. No more leaking, no pains and far less gassy.
Back to being constipated but not as bad as before. Seems to be less blood in my stool.

I’m thinking I’ll stick with the steroid foam just until I get back from my holidays then see if I can seek an alternative. My problem is I can never seem to get advice from anyone. Consultant ignores all emails I send and the doctors won’t do anything to alter UC meds. Don’t know if I done the right thing changing back to steroid foam just felt I was going backwards

I didn’t really get on with the suppositries. I found that the daytime one I would just leak out black stuff constantly and not make it to the toilet in time. Found them quite distressing as I’d be worried to wear light clothing or even go out.
I think the main reason I’m liking the steroid foam is I have no leaking and doesn’t really change the appearance (although I know with the mesalamine it is normal for them to turn the blood black and white stuff in the stool)

I haven’t to be honest purely because I don’t know the best ones to take. Have you got any recommendations?

Old Hat said...
Jess, if your foam is 10% steroid, it's not urgent that you wean off it ASAP, the way it is with liquid retention enemas or oral steroid meds-- to avoid harmful side effects. I can well understand your preference for using the foam over supps or liquids-- because leaking is a major nuisance with those bloomin' supps; much better to have med that stays where you need it! Sorry that your consultant is such a drip about timely replies to your Qs. *** RE overcoming C, you may not want to steam veggies during a summer heat wave, but eating them can be very helpful, especially extra-moist yams. In my experience they seem to have just the right amount of soft fiber to get things moving w/o irritating the colon. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Yes unfortunately I still haven’t heard anything back from consultant. I think I’m coming to the end of 7 or 8 weeks on the steroid foam. I’m feeling quite conscious that I shouldn’t use them for longer than this however, without any advice or help I’m just carrying on.

The last 2 weeks I haven’t had any noticeable blood, I am still constipated but with that I can sometimes go twice a day (just very hard, small stools)

Feeling a lot more positive about symptoms. I have been introducing things back in slowly and haven’t noticed a negative effect. Stomach does feel gurgly and put me on edge when I over indulge but don’t know whether it is just my body getting used to eating other foods again.


I had my colonoscopy almost 1 month ago yet have still not recieved a date for a follow up appointment with results for my biopsies. Anyone in the uk - how long should I expect to wait?

Not in the UK, but:
Can you tolerate alternating steroid foam and mesalamine enemas?
I think a month is more than long enough to wait for scope results. I wouldn’t feel bad about calling to get them.

Also, just a question for you guys. I have been put on a weeks worth of anti biotics for an infection I have. I’ve heard the anti biotics can flare symptoms.

3 days in I wouldn’t say I’ve had any changes apart from I’ve started to get the feeling of feeling like I need a bowel movement all the time, like pressure in the rectum. Could this be the start of something?

Absolutely add a probiotic. I take mine at bedtime...
I've never flared from antibiotics, but I stick to ones Ive used in the past.

I second using the steroid enemas for now.

q

Check if you can get the Florastor probiotic over-the-counter at a pharmacy. It is highly recommended in the U.S. to protect the gut function while undergoing Rx antibiotic treatment. (Its main ingredient is Saccharomyces Boulardii = S. Boulardii, for short.) *** RE vitamin D level: requires blood test. In U.S. the desirable blood level for D is 30 and higher. *** Hope you can enjoy your family's holiday break in spite of UC. Take some TENA disposables along to ease your fears about leaking, and stay well-hydrated wherever you go. Be sure to pack your steroid foam first of all!!!! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Re: probiotics. I don’t really notice a difference when taking them so I suspect it’s a gradual thing. My thinking is they don’t hurt, so throw as many different strains as possible in there. I take florastor when taking antibiotics but I also take a daily probiotic. I switch brands often — I just look for one that has several different strains and the highest CFU.