New To UC... advice/tips??

So after having gallbladder issues for over a year I decided to finally go get a Hida scan which showed my gallbladder was not functioning. I am an RN at this hospital so I went to see one of my favorite surgeons who wanted me to get an egd/colonoscopy just to double check everything before my lap chole. Once the testing was done he said that I had some proctitis so he recommended that I take 2 weeks worth of hydrocortizone enemas. These in my opinion were horrible. It made me feel plain awful and it probably was not as effective as it could be because at the beginning I could barely hold them in for 30 min. The last week of the treatments I found that if I divided the doses and did half and half I was able to hold one half for about 30 min then expel it and then apply the other half and hold it all night... after this my surgeon called me back with my biopsy results... on Valentines Day... Ulcerative Colitis. I finished my 2 week course of enemas and had no symptoms for 2 weeks. He did not put me on a maintainance drug bc he wanted to see how long it would take my body to show symptoms again. A few days ago I began to see mucus in my stools again which was my number one problem during this whole thing... so today I began Asacol 800mg TID.

Prior to all this my symptoms were generally normal stools with mucus mixed in and then I would have periods of urgency where I would literally have to sprint to the bathroom and have horrible gas with almost explosive at times mucus with no stool at all. After this went on for about 2 months straight I knew something had to be wrong so I went to the dr to find my gallbladder sucks as well.
I have never had diarrhea with this and only have had blood tinged mucus a handful of times...I also have the typical crampy type pain in my left lower quadrant. My kind of UC is Ulcerative Proctitis which I hear is the best UC diagnosis but I am still scared to death and even though Yes I am a nurse my family has no "health care sense" and seem not to get that this is FOREVER! I just turned 24 and the idea of a forever chronic diagnosis is overwhelming!

SO the plan now is to get my gallbladder out in May since that can also be causing some of the mucus/bloating/gas problems that I am having. I would like to be able to just be able to tune into my UC symptoms.

SInce this is all new to me I havent been able to really hone in on any triggers to what makes me flare up... Just really need people to talk to that understand all this... :)

Kahlee

Hi Kahlee, welcome to the forum. I'm sorry your diagnosis. Yes, to have a chronic disease dxed is overwhelming at first..... it took me some time to "get my head around it."

I might suggest you ask for Rowasa retention enemas - they will bring more mesalamine to the area, from from the other end than the Asacol......
A lot of people here have really good luck with them.

I was diagnosed with u. proctitis in 1983, almost 28 years ago. I remember crying and thinking my future was limited.... since then, I've had two kids, taken up singing and performing, horseback riding.....and my empathy level toward those with illness has taken on a new depth.

So... I'm glad you found us, and I hope we can support you as you get this current flare under control...... I have learned so many things from folks here, and I am much more proactive now to start on rectal meds, increase my probiotics, etc when I sense the slightest symptom, - HW has helped me so much!

Ask questions here, you'll get many helpful and varied viewpoints!

When I did the enemas before... like I said, I didnt tolerate them very well... do u think a suppository would do the trick? I have read that combination with the asacol and mesalamine enemas work well?? So far I just had the one day of mucus mixed in the stool and then the next day had two small bms of just like a dime size of mucus... no mucus for three days... I do notice however that my knees ache like crazy when I am having these flare ups... does anyone else have this?

Yes, joint pain is common with UC.

You used steroid enemas in the past, maybe the mesalamine would be better.

The supps would be better than nothing, maybe to start using them twice daily for a week and then use the enemas nightly to see if you can retain them better once some of the inflammation has lessened.

Retention of the enema can be difficult, but eventually, they may work for you.

The other option could be to use the steroid foam (cortifoam) which would/should be easier to retain...but if you can do the mesalamine, it would be a better start (my biased opinion).

The symptoms you're having are classic with proctitis. You have a way to go yet.

Please get on probiotics, and the suggestion of fibre supplements will help as well. start slow, however. I find capsules better than the kind that is mixed.

As well...try to avoid any artificial sweeteners.

q

KahleeRN said...
When I did the enemas before... like I said, I didnt tolerate them very well... do u think a suppository would do the trick? I have read that combination with the asacol and mesalamine enemas work well?? So far I just had the one day of mucus mixed in the stool and then the next day had two small bms of just like a dime size of mucus... no mucus for three days... I do notice however that my knees ache like crazy when I am having these flare ups... does anyone else have this?

In my case no. Suppositories did very little for me where as the enemas cleared my symptoms in days.

When I first started using them, the doc said...even if you can hold them for 30 minutes..it's better than not using them.

get the 4g mesalmine to start. And some, have used half the dosage each night until they could retain them longer. You already have that process experience.

I cannot express the rectal meds enough....learn now rather than later.

q

I was at a crossroads with a doc wanting me to get on 6mp and me wanting to give mesalamines another try after I flared for a second time. Docs are very expedient. I found another doc who supported me in a topical approach.

journey, im in ireland we dont have much choice with are GI, as are NHS is free,but it was really up to me whether to start imuran or not so as i say im going gave it a year i think.