Why did I listen to the Doctor?

I explained my entire situation to him.
I can’t express strongly enough that I held nothing back. That’s when he asked about Celiac Disease.

In my mind there was no other option but to schedule a colonoscopy based on what I told him.

After my explanation he was reading my history on his computer. I was just waiting for his reply. That’s when he turned, walked out and as leaving said “See you in 6 months”.

In hindsight I guess I was stunned and went blank. So I’ll have to assume some of the blame.

However, I wasn’t impressed with this Dr the last time I saw him and feel it’s best I find another.

beatUC said...
OMG what is this obsession with rectal meds?

Not an obsession ... just that for some people they really work and definitely worth trying. Sorry they didn't work for you.

Rectals are good for mild inflammation. They are not strong enough to treat more advanced inflammation.

beatUC said...
Rectal meds will only work for the very small minority of UC sufferers who have involvement in the last 12" of their colon.
Yes they are worth trying for that VERY SMALL percentage, the rest of us, it's just a waste of time. It almost seems like a weird fetish here how often rectal meds are pushed and mentioned.

Since UC starts in that last 12" and works up they can often help with the most life interfering symptoms even for people who have pancoloitis. Poopydoop is right in what she said above about the "yuk" factor, but they really aren't any big deal once you get used to the tricks of using them. When I was new to UC I asked my doc about them because I read about them here otherwise I would never have known about them. They helped me a lot but not enough for remission because my UC was further advanced. I was down to only about 3 BMs a day no urgency, but still seeing some blood. Doc did another scope and thought I had Crohn's because the rectum was clear and the inflammation didn't start until upper sigmoid (where the rectal med couldn't reach). That was because of the rectal meds healing the rectum. (I have since had more extensive testing and docs are now firm on UC rather than Crohn's).

Not a fetish at all. Just kinda yukky and some people can't get past the thought of sticking something up their butts. Rectal meds are a legitimate medical treatment for UC and while they won't get you in remission if you have more advanced disease, they can be very helpful if dealing with the most life altering symptoms of flares -- frequency and urgency.

Are you sure you don't have Crohn's? Look up the definition of ulcerative colitis -- everything I have read starts with the rectum and then works up. This was also confirmed by my doc when my rectum was clear from the rectal meds and he thought it was because I might have Crohn's instead of UC. If you never had rectal inflammation you may not have UC and I can see why rectal meds didn't work for you.

A weird fetish? 🙄 uhhh, yeah, almost all people with UC have involvement in the last 12 inches... Beave speaks with such authority about something they are uninformed about.

Rectal meds kept me off biologics for a decade. And I had severe disease and symptoms. My rectum was also completely healed and I had inflammation in the sigmoid...my GI also told me this was due to rectal meds.

None of us enjoy sticking enemas up our butts. What a rude and disrespectful comment. There is enough embarrassment and shame around this disease, don't try to shame us for using medication that we have to use because it is our only option for some of us and it works.

I think something like 95% of UC cases involve the rectum (I forget the exact number). It's actually quite rare for UC not to involve the rectum but it does exist. Just goes to show there are different types of UC. Rectal inflammation in many ways gives the worst symptoms because if there is significant inflammation there then you can't retain your poop leading to accidents (speaking from bitter experience with both pancolitis and proctitis - it was the rectal inflammation that made life impossible). When I had severe proctitis then rectal meds did nothing. Now my disease is mostly controlled by xeljanz 5mg except the last few cm and rectal meds help me to stay in remission (a higher dose of xeljanz would also work).

I will be honest I also find it irritating when patients are instructed to use rectal meds and it's clear their disease is way beyond that. No harm in trying but they really, really don't work for everyone.

Only BeatUC would come on here and do what she does best.

My opinion is get real smart about what you have and stop harassing people about how rectal meds (mesalamine or steroid) don't work because of your own aversion. It can be an adjunct to other systemic meds or as treatment in conjunction with other oral topicals. And it IS a viable and excellent treatment.

Re mild...i would consider up to 20x a day not mild..so me starting with them to at least be retained for 30 mins, eventually got me up to full nightly. It's a commitment, yes, but a worthy one.

So...in truth, I really don't care if one chooses to suffer and avoids using them, but if they are tried and don't help, there can be reasons for that. The primary reasons are usually a GI rxing them alone without oral topical support, not high enough of a dosage, not using the enemas, too short of a course, or sensitivity reaction and need to be ceased.

There are many here who have used them while on biologics...ipoop is one who used them for an extended amount of time (a year nightly I think).
They're an option...a suggestion...and ways to use a combo of them that could help.
If GIs dont rx them, then it will be suggested that one to be proactive and request them.

What really is the harm in that?

And BeatUC...you barely make suggestions here...btw.

q

BeatUC: "omg what is this obsession with rectal meds???""

You started with the personal attack.

On the Rectal meds.... They are sorta a "Yuck" factor item. At the beginning you really don't want to use them... But as your flare goes on, and on, and .. on .. you start thinking .... Just back the darn truckload right up to my front door! When I first started my journey shoving anything up my hinney totally freaked me out... Heck I didn't want anyone to even look at me back there!!

My 1st flare started from my rectum up. My GI, CRS diagnised me with UC. They both brought up rectal meds to be used in conjunction with my other meds but with my fistulas... No retention. I was so disappointed.

Then later on they diagnosed me with Crohn's too. That one started high and went downwards. Now they both come and go at random areas. They are similar but there are differences in the way they present themselves...surgery options.... outcomes. I was so very disappointed when I got the dual diagnosis. I digress.... Mayo Clinic concurred with my other doctors AND they all brought up using rectal meds.... Before I even asked about them.

We finally approached my pharmacist who developed a very thick cream that I use and it seems to help me. But there's still that "yuck" factor. LOL. And it's not really the same as the rectal enema meds but gosh it sure does help.

So I dunno. Every journey is different.

Clo