HealingWell
Search Close Search
☰

Recently diagnosed and having a difficult time

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/30/2017 3:20 AM (GMT 0)
I was diagnosed with ulcerative colitis last September. The first 6 months or so I was in denial thinking I was misdiagnosed and the doctor was going to call and tell me they made a mistake. Obviously that call never came. I've never been in remission and I have anywhere from 5-20 bathroom trips a day. Meds don't seem to help. Staying away from certain foods doesn't work. It seems like this is just my new life and I need to adjust. My quality of life has decreased drastically. I don't go out anymore because I'm afraid I won't be able to make it to the bathroom. If I do want to go out for a big occasion I won't eat that day for fear of needing to use the bathroom while I'm out. I say no to friends all the time. Also, nobody knows about my diagnosis other than my wife. I'm looking for some sort of in person support group or friends with UC who know the struggle im going through. I'm an ER nurse so I see people come in all the time with complications of UC and I can't help but thinking "that will be me in 5 years, 10 years etc". I have never smoked pot before but I'm curious if medicinal marijuana does anything for UC. Florida recently legalized it. Thank you all in advance for your help.

Post Edited (Corvette) : 6/29/2017 9:28:24 PM (GMT-6)

Posted 6/30/2017 3:29 AM (GMT 0)
Wish I could offer some help.

My symptoms started about the 1st of the year. I have been on several meds, nothing has worked. Its been nearly 7 months of declining quality of life. Its a crappy situation that keeps getting worse.

My doc is finally talking about starting remicade. I read about everyone getting into remission and am hopeful that is something I can look forward to.

It is difficult to work, let alone see friends and/or family.
Posted 6/30/2017 3:53 AM (GMT 0)
What's remicade? I'm not familiar with that. I was started in lialda.
Posted 6/30/2017 6:30 AM (GMT 0)
if lialda does nothing an additional med should be added. unmanaged, the cancer risk is high
Posted 6/30/2017 7:09 AM (GMT 0)
Lialda works for some people - mostly people with fairly mild disease - but lots of people with UC need other stronger medication.

There are lots of options. You shouldn't have to suffer with bad symptoms all the time. Work with a good gastroenterologist and get on stronger medications as needed.
Posted 6/30/2017 9:42 AM (GMT 0)
There are three classes of UC medications, and unless you've tried them all then I wouldn't say UC medications haven't worked for you.

First class uses lialda and rowasa enema simultaneously.

Second class adds 6MP or imuran to the 1st class.

Third class is biologics like remicade or humira, which are added to the above two classes.
Posted 6/30/2017 5:35 PM (GMT 0)
i suggest rectal retention enemas to the mix in conjunction with Lialda.

Do you have a copy of your biopsies path results?

q
Posted 6/30/2017 6:54 PM (GMT 0)
Sorry for your diagnosis and suffering. Everyone goes through the denial phase so don't worry. Get educated on condition, complication and medical options. More you know, you will feel mentally and emotionally better.

Like ipoop said there are different treatment options.

1. 5ASA class of medication. oral and rectal which includes Delzicol, Lialda.. and Rowasa, Canasa...rectally. Oral and rectal works well together.
2 If 5 ASA does not work, you can go on 6mp/Imuran. Its immunomodulators.
3. If that does not work, you can add biologics like Remicade,Humira etc..

Sometimes you have to take prednisone to get in remission and then maintain with one of the above medication.

Some people stay in remission for years and you don't realized that you have UC. I personally don't mind to talk to people. More I talk to people, I realized everyone knows someone who has IBD and sometimes get annoying but sometimes good suggestions too.

Talk to your doctor and find the right treatment and take care of your health. Hopefully you will get in long remission.
Posted 6/30/2017 7:04 PM (GMT 0)
It took me a long time to get to remission after I was diagnosed. But I got there after many months of working with my doctors and sticking with the meds. It's almost equally as difficult as the symptoms to have your image of yourself and your life suddenly change. One thing I think UC has helped me do is develop my sense of bathroom humor smile Sometimes you just have to laugh and remember that everyone is human and deals with gross horrible stuff!
Posted 7/1/2017 12:50 AM (GMT 0)
Corvette

I live in Florida and have tried pot (not legal MM) but other than being relaxing/reducing anxiety it has not been my cause for remission.

Like you I did not get much/any benefit from RX oral meds but did get benefits (less urgency) from using rectal mesalamine enemas. These are "retention" enemas, meaning try and keep them in so the medicine travels upward and heals that area. Big improvements once you get the hang of using them nightly. Yes they are much less easy than taking a pill but pills don't work for me.

What you need to know about medical pot and Florida is that UC is not on the list of allowable diseases. Sucks that Crohn's is and UC isn't but maybe your friends have some to spare for you to try it out. Maybe it will have some benefit for you.

Sorry I don't have more advice (except use enemas!) but it took me years to figure out ways to reduce my symptoms. Your GI's job is keeping you alive by preventing cancer and lowering inflammation, seems like the symptoms are left to us.
✚ New Topic ✚ Reply