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Diagnosed a few months ago, need advice

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Ulcerative Colitis
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Posted 4/18/2012 6:59 PM (GMT 0)

Hello, I was finally diagnosed wiht UC a few months ago after much testing and over a year of nothing but liquid diarrhea.  I started official treatment with 1 month of prednisone, then nothing for 2 weeks, then started Lialda (4 a day).  I have now been on the Lialda for over 2 months. I would say I'm slightly improved. I now usually have mushy stools instead of liquid and my frequency is down to 5-7 times a day (from 20+ at the worst point).  However I still have the cursed urgency, and along with that, accidents. The accidents are what is so intolerable and making my life miserable. I need help.

I'm not scheduled to see my GI for another 3 months.  I asked if I could have rectal meds, he said I didn't need them although I have inflammation throughout my rectum, sigmoid, and patchy in other areas. From everything I've been reading, it sounds to me like I need a rectal med as well as the Lialda.

My questions:

1.  Will I continue to get better, and be able to achieve remission on Lialda alone?

2. I have 12 Canasa samples from a different dr. long time ago - should I take them without my current GI's permission?

3. Am I supposed to get regular blood work when taking Lialda? Or with UC in general?

Thank you in advance for your advice!

Posted 4/18/2012 7:03 PM (GMT 0)
I think you need some rectal meds for sure. Still having that many bm's a day isn't good. The Canasa sure isn't going to hurt you and I would take them. Yes you should be getting blood work done. My GI requests it every 6-12 months to keep an eye on my liver especially not to mention to see how other things are looking like Iron. If your not comfortable with the care you are receiving it may be time to look for another GI.
Posted 4/18/2012 7:09 PM (GMT 0)
For me, rectal meds stopped most of the urgency and all of the accidents. It is the inflammation in the rectum that is most strongly related to urgency.

Some do get remission with only Lialda (5-asa). Sadly, I did not, but have been improving slowly over past 3 years on Lialda and 1 year also on rectal meds. I also got some solid stool after starting VLS#3 DS probiotics.

Mushy stool (instead of liquid) may help Lialda work on sigmoid and rectum. IMO with lots of liquid diarrhea, the drug is moving too fast to help much in the left and sigmoid colon. It does act topically, and does need to be "in contact" with the mucosa for some time to help most.

Good luck.
Posted 4/18/2012 7:32 PM (GMT 0)
1 month of Prednisone is not very much. I am surprised that you were taken off of it when you are still having symptoms. No one wants to be on Pred for a long period of time but a few weeks will not cool down the colon when you have 20+ BMs a day. What dose were you on? Cortifoam helps me with urgency during the day and mesalamine retention enemas help heal at night. For me rectal meds are my first line of defense when flaring.
Posted 4/18/2012 7:33 PM (GMT 0)
It's entirely possible to gain remission only on oral meds. However, studies show that people who use both oral and rectal get into remisison more quickly than those only on oral. To me, based on your symptoms, it sounds like your inflammation in the upper part of your colon has gotten much better, but you still have inflammation in the lower parts of your colon and rectum.

I'd call your GI back NOW and firmly request rectal meds, and if he won't give them to you, start looking for another GI. Or you can always see your GP and see if he will prescribe them. It's total BS that you don't need rectal meds b/c your inflammation isn't limited to the distal parts - I have pancolitis and the enemas helped me tremendously.

I'd go ahead and use the Canasa, but 12 isn't really enough to get you fully into remission.
Posted 4/19/2012 4:09 AM (GMT 0)
I agree with the posts above; if your present doctor won't Rx rectal meds, you should look for a gastroenterologist who has experience treating IBD. There are steroid retention enemas, mesalamine retention enemas, plus steroid or mesalamine suppositories, plus steroid retention foam (Cortifoam) that is especially soothing to an inflamed rectum. In the UK, Europe, & Australia/NZ patients also have access to mesalamine retention foam, which we still cannot get in N. America, for reasons unknown. Additionally, there are other oral mesalamines besides Lialda, which might be more helpful to you-- so it's important to connect with a doctor who knows what's available/how best to use it. In the meantime, look into disposable undergarments (such as Depends) if you're plagued by urgency & need to be out/about for a length of time. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/19/2012 4:16 AM (GMT 0)
I agree: rectal meds + new GI.
Posted 4/19/2012 12:21 PM (GMT 0)
I know with my mesalamine enemas, if you read the directions, you are supposed to discard if they turn dark brown. There is an expiration date on the bottles.
Only 3 months.

Forgive me for interrupting this thread with a personal question, but is it normal to decrease your oral mesalamine when adding masalamine enemas?

TY,Bob
Posted 4/19/2012 12:56 PM (GMT 0)
I agree with all of the above. I always feel angry when I hear about a doc who just lets a client languish while still as obviously flared as you are. Your doc should be working with you actively to address your ongoing symptoms. My doc, while not perfect, will speak to me over the phone regularly while I am flaring if I need him to. I call him and he calls me back within one day.....awesome considering I live 3 hours drive from him.

I too am a bit confused about the pred. Usually you would not go off it while still flaring as you are unless the final conclusion was it was just not working.

Yeah, get anew doc. This disease has made me a great advocate for myself!
Posted 4/19/2012 1:07 PM (GMT 0)
One more thought. I fairness to this doc and because it is a struggle to start all over anew.....I cannot tell if you have called him and asked for an appointment to discuss your continued flare. I guess sometimes the squeaky wheel gets the grease. He may not be aware of your situation.
Posted 4/19/2012 1:50 PM (GMT 0)
Coffeeman-I have never decreased my Lialda when using the enemas. I've never had a problem at all.
Posted 4/19/2012 1:54 PM (GMT 0)
Coffeeman -- my enemas' expiration date is out 2 years. They don't expire in 3 months unless for some reason you're getting really old ones from the pharmacy.
Posted 4/19/2012 1:54 PM (GMT 0)
I had only been on Asacol, the maximum dose, for 7-10 days (can't remember exactly) when I started the mesalamine enemas, and I didn't decrease my dose. I was still flaring badly at the time. I think that absorption of meslamine in enema form is so poor that there's no real need to.
Posted 4/20/2012 2:18 PM (GMT 0)
You all have given me such wonderful advice, and I sincerely thank you.

I've had my suspicion confirmed, that I'm not getting the best care. Joma - I agree with the anger. How can any caring human being let someone go on for 18 months with continuous diarrhea and accidents? I would be livid if it were a friend or family member suffering like this. I guess when it's me and it's my daily life, sadly I've gotten used to it. If I have one day without an accident, I think it's a great day, rather than feeling upset about the other 6 days a week when I do have an accident.

As for the pred - I didn't have a confirmed diagnosis yet. We were pretty sure I had IBD, so we started trying meds. First prednisone 40/30/20/10 over one month. The pred helped quite a bit. I was then on nothing for 2 weeks, and I called dr. saying I was doing worse again - and they started me on Lialda. At first I thought it wasn't working. I had another colonoscopy while on Lialda, which confirmed my diagnosis, and the dr. kept me on the med.

After a couple months on Lialda, I just saw my dr, explained him all of my continued (although slightly better) symptoms, and asked for rectal meds when I was told I didn't need them. I was shocked, buy he was on his way out the door. I could tell he was not willing to discuss this issue. I am going to call back today - tell him I am still having almost daily accidents. I don't leave home and I can't go on like this. I thnk I should be taken off work - but at minimum, I need rectal meds. And thanks to all of your advice, if he won't give them to me I'll find another doc, even my primary doc, and get them.

Stubbornly - I've refused to wear depends. At this point I'm not having full accidents, just partial. I wear pads and carry extra undies and pants with me all the time. I should probably give in, but I'm still a young woman (36) and have a subborn vanity. I would rather do laundry than wear a 'diaper' if I can avoid it.

I really feel so greatful to you all - I can't say how much it means to have people who understand and care.
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