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recently diagnosed with ulcerative colitis

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Ulcerative Colitis
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Posted 4/30/2014 7:45 AM (GMT 0)
Just got diagnosed with ulcerative colitis a month ago and have so many questions.I'm 20 years old and found this pretty scary to deal with. I have been flaring up for the past 2 months and am nervously waiting for the medicine to start working once. Any advise on how to deal with the anxiety and uncertainty?
Posted 4/30/2014 8:13 AM (GMT 0)
Hi, I have just been diagnosed too after 2 months of flaring. I have found the best thing to do is to speak to family and friends about it, get your worries out and, read up on as much as possible.

I was worried and scared when i was diagnosed but, talking and swotting up on the subject has made me feel a bit calmer.

Hope you feel better soon :)
Posted 4/30/2014 8:17 AM (GMT 0)
I've kind of found it hard to explain to family and friends. Colitis isn't the easiest disease to talk about. I find it embarrassing at times wen I do try to talk to people about it.
Thanks for the encouragement!
Posted 4/30/2014 8:54 AM (GMT 0)
Yer it isn't too much fun discussing it lol but, once you have said it then its out there and much less embarrassing! Maybe just try with one person at a time? Maybe your mum or dad, then move on to maybe ya best friend who won't judge and you feel comfortable with.
Posted 4/30/2014 12:07 PM (GMT 0)
What meds are you on? Definitely read up on it as much as possible. There is no known cause and no known cure so the doctors just try this and try that until they find something that works. They only go by the book, that book that doesn't know the cause or cure so they are not open to thinking outside the box - the box with no known cause and no known cure. You need to learn as much as you can and be a part of the decision making process and be your own advocate.
Posted 4/30/2014 2:08 PM (GMT 0)
I was diagnosed in November, there are a lot of stories on this board and others about the real horror stories of UC, but I don't have those horror stories, and many people don't get them either. If it helps, here's what has happened to me so far:

July '13 - what felt like a dose of delhi belly, just a bad case of the trots
August '13 - it didnt really seem to calm down, I had good weeks and bad weeks, but it wasn't right
Sept '13 - mostly being woken up several times a night to go to the loo, and going to the loo about a dozen times during the day. Some urgency, unpleasant. Started bleeding.
Oct '13 - GP referral. Bleeding was worse.
Nov '13 - colonoscopy (luckily I had private healthcare so I saw a consultant and had a scope within a couple of weeks) and diagnosis.
Nov '13 - started Asacol 6 x 800mg pills per day, effects dramatic and I had no urgency, the trots mostly stopped and no getting up at night, all within a few days or a week or so.
Dec '13 - dose of asacol reduced to 3 per day, doing OK
Jan '14 first week - had a cold. unknowingly took a load of lemsip which flared me up bigtime. felt dreadful, got the trots back. Saw consultant, upped my asacol plus went on a course of budesonide (steroid) for 8 weeks. Cleared me up really well.
Mar '14 to date, 3 asacol a day and I'm fine. I have the odd day where I feel tired and wiped out, but nothing I can't handle. I am back to a couple of trips to the loo per day, but no urgency and no bleeding.

I appreciate that I'm not far in and things can change, but I am really optimistic about my situation,, I don't feel like things are going to worsen and turn into the litany of issues that some others report. I have to know my limits and remember to take my pills, but I lead a very normal life and am not "ill".

Ask lots of questions to your consultant, find out what he wants you to do when you have a rough day, when you have a few rough days one after another, and what to do if you feel like you're not getting better after a couple of weeks.

A great many people get through this without long term life changing illness, don't worry about something that might not happen until you get there.

Richard
Posted 4/30/2014 4:14 PM (GMT 0)

ChristiM said...
I have been flaring up for the past 2 months and am nervously waiting for the medicine to start working once.

What meds are you on? Hopefully you are in regular contact with your GI about your symptoms and progress. Two months is quite a while, has your doctor tried different medications or dosages? If your current treatment isn't working then it is time to shake things up a bit and try something new. Unfortunately, a lot of the treatment plan for uc involves trial and error, and the early stages of this disease are full of a lot of both of those things. The key thing is finding the treatment combination that works the best for you; everyone is different.

ChristiM said...
Any advise on how to deal with the anxiety and uncertainty?

That's a question everyone with UC struggles with. As the UC disease has two sides to it one that is treated with medications that clear up symptoms. However the second side of uc, the emotional or psychological side is the hardest part to treat. There is a lot of uncertainty with UC and the nature of the disease can create a lot of anxiety (where's the nearest bathroom, can I make it on a long car ride, etc.). Some of the impact of uc you become accustomed to, you learn to adapt over time, and it does get better once you are over the initial shock of it all. Try to get your mind off of UC whenever you can. And of those who need extra help, some of us seek therapy or are on anti-anxiety medications.

Being prepared helps, I recommend preparing an emergency kit consisting of a ziplock bag, change of underwear, extra toilet paper and wet wipes, and taking it with you when you leave the house. Conceal it in a purse, backpack, or in the trunk of your car. It helps tremendously for peace of mind when you're out and about with anxiety "what happens in the worst case scenario" (you have it covered and have supplies just in case).

ChristiM said...
I've kind of found it hard to explain to family and friends. Colitis isn't the easiest disease to talk about. I find it embarrassing at times wen I do try to talk to people about it.

Yes, it is an embarrassing disease. You probably owe it to your family and a close friend to at least tell them the basics: you have UC an autoimmune disorder, etc leave the diarrhea and poop out at first if you wish haha. You will feel better having some people you can confide in when it gets rough.
Posted 5/1/2014 8:55 AM (GMT 0)
I'm currently taking lialda three times a day and rowasa once a day. I had a week of trying lialda and suppositories which seemed to help.my GI decided to keep me on the lialda and try the rowasa for a month.

I'd also like to thank everyone for their comments and advice it means a lot.
Posted 5/1/2014 1:08 PM (GMT 0)
Just hang in there Christi. Know that you're not alone and this forum can really help you with many questions that you may have. I know it's really tough the first few months because before you were diagnosed you probably didn't even know what UC was. All the best!
Posted 5/1/2014 1:26 PM (GMT 0)
After two years of this I have found this site to help me the most other than my doctor. I can vent here, and let my family have a break from it. Some people want the details, some don't. I let them ask questions then I try to answer simply without over informing ...not easy for me!
Research everything. I get info here, then research it for myself. Stuff here is usually reliable, the more I research the more I learn about myself.
I think the anxiety can ease with time, except just when you think you have figured something out, it may change! It can drive you crazy! Just come here and scream in all caps, "THIS IS GOING TO DRIVE ME CRAZY!". :)
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