Advice from veteran Uc'ers to the newly diagnosed

After reading some posts from people that have had Uc for a while I thought I would create a post to see if you are willing to share your history and/or secrets of coping and living with Uc.  A post like this might be beneficial and encouraging for our newly diagnosed members.

By veteran Uc'ers I mean having been diagnosed with it for at least 10 years but I think people that have had it for less of time...lets say maybe 5 years...could be able to impart their wisdom as well.

Do you have any advice for the newbies? 

Indeed knowledge is power!

What about the emotional impact of having Uc? How have you learned to cope? <--this is a question for everyone as well.

I'm no veteran either, I've had UC for about 5 years. My advice is to do your research and work as a team with your GI and don't let them run the show. It is ultimately up to you how you are treated and sometimes you have to be your own advocate. For instance, we (meaning my family and I) were at our wits end on treatment and we had exhausted all options. My mom remembered that my GI mentioned a bowel rest in passing in previous appts and she brought it up again. I had the bowel rest and I went into remission. I'm not saying you should go tell your GI you want a bowel rest, but if that hadn't been mentioned to my GI, it probably never would have happened.
I was diagnosed young (15/16). For a while I was really bitter about it and slowly I began to realize that this is something that is a part of me and I can't change it so why put all this effort in being mad about it when I can put that effort in to not letting it defeat me.
I think after having UC for a while you eventually learn your way around and how to cope. It just takes time.

I agree with Judy2 & Callalilly. It helps to find out as much as you can about UC's nature & treatment, but try to keep up your major interests so that you have pleasant distractions regularly for the sake of body and soul. When 1st diagnosed I was pretty much housebound in the evenings & could not attend cultural events because I felt weak & needed frequent access to the Throne. The music of J.S. Bach being a big passion of mine, I got involved taping his cantatas as they were broadcast on local FM radio; this gave me a different focus & I felt my time "shut-in" was turning for the better. I ended up thinking no matter what havoc my intestines were wreaking on me, my mind still worked, I could see, hear, walk, & talk-- which meant I could overcome UC & its problems. I was also much encouraged/inspired by a friend who had had to deal with sudden-onset epilepsy in still-young adulthood. In short, try to stay positive & proactive. / Old Hat (30 yrs with left-sided UC ... [etc.])

Great advice! Thanks to the veterans for offering us newbies some terrific info!

I am a 29 year old and was diagnosed with UC back in 1989 (I know, pretty rare for a child to be diagnosed). I have to say, it is very different in everyone. Fortunately, I was one of the lucky ones with it (for the most part). The things that really helped me out was staying on top of my meds and watching the heavy cream and grease filled foods. Avoid letting it run your life. It can be a pain at times, but you have to run your life, not let the disease run it. The best piece of advise I can give you is to be very knowledgeable about your disease. As a child, I was unaware of what the disease was about. Becoming an adult, I sort of knew what would happen in a flare, but never knew to a full extent what it was about. I never knew what the worse case scenarios were. It is really good to be prepared for these things. A worse case scenario happened to me with quite a surprise when I was hospitalized at age 24 out of the blue and it resulted in a total colectomy. I am fine now, but still am very aware of the things I eat. I think that if I had not taken the disease for granted, I may have prevented (or postponed) this very bad flare. Really be aware of your body. Don't ignore it if it is trying to tell you something! I am not writing this to scare anyone, but to be honest. Really be educated about what the disease is about. I neglected this and found out when it was too late.
I wish each of you luck and good health.
Maureen
____________________________________________
diagnosed with UC in 1989
remission until 2004 when had total colectomy
2005 allowed for a ostomy take down

Accept your body's needs and you'll learn to manage.

Don't eat before or while you are away from a restroom, because eating stimulates the bowels.
Always make pre-emptive restroom stops before you'll have to be away from a restroom, like before getting in the car or walking somewhere.

     I was diagnosed with ulcerative proctitis eleven years ago at the ripe old age of 52 which is older than most folks when diagnosed.  I heard this is a young persons illness.  There isn't much more to add to the posts.  I learned from my mistakes.  After being diagnosed and going into remission two months later, I stopped taking the Asacol.  I enjoyed a two years remission and boom....flared.  This time the doctor put me on Colazal and 6MP along with the prednisone.  Since then my flares have been getting closer together and lasting longer.  Sorry to say I have been dependent on prednisone much too often.  I was on it six months (May thru Oct of 08), had a six month remission then flared in May of 09 and had to go back on the prednisone in June.  I finally was able to wean myself off of it by Sept but sorry to say I am now flaring once again.  I cannot retain the cort enemas but the canasa seems to give a little relief.

     Just stay on your maintenance meds, watch your diet...no spicy, greasy high fiber foods.  Make sure you have a good relationship with your GI doctor.  If he/she makes you feel uncomfortable or he doesn't answer your questions to your satisfaction, move on to another GI doctor.  Good luck!

  Here are some of my tips:   How do I tell my family about my Chronic Illness?   This is a very delicate subject. Some families are very accepting and try to understand; even educate themselves with the illness. Many times it’s hard for families to comprehend just what our illness entails, and it’s been heard many times over, “If you’d just change your diet” or, “You are under too much stress!” For some, diet and stress isn’t the cause of UC, but it may exacerbate the symptoms especially when in a flare. But it’s very difficult when you hear family members say these things. Hey, all we want is a little compassion!   It took me some time to tell my family as I didn’t want to upset them. It was a relief once I did, and my mother asked why I waited so long. I suppose it was because I didn’t want to be constantly reminded of what I had; and sometimes I just didn’t feel like talking about it. It’s enough to just deal with some of the symptoms.   The good part of telling family members is that some of them, or their children might have the same issues – and you’ll be able to help point them in the right direction to get help and relieve them of symptoms.   How do I tell my friends about my Chronic Illness?   Some UC patients would rather not bring the subject up to just anybody and will only tell close friends. I was worried that others would think they could “catch” the illness, when in fact we know that is not true. Little by little I let my friends and coworkers know. I was amazed at how supportive my friends and coworkers were, and they even helped me through some of my worst days (and still do!) On the days I’m not feeling well they can tell right away and ask if my illness is bothering me; some are even comfortable coming to me and asking advice about what to do when they have gut issues. I’ve become more open with people along the way which I think has opened the door for others to feel comfortable talking to me about sensitive issues they may be encountering.   How do you handle work issues?   When I was first diagnosed with UC, I was up for a promotion and really worried about how my illness would affect the outcome. I worried about losing my job and health insurance. To make things worse, my boss asked me after I was diagnosed, “How will this affect the department?” As if it wasn’t hard enough to deal with the illness, we have to deal with comments like these. I believe by keeping a positive attitude and finding the right combination of medications has let me take back control of the situation.   As for the restroom situation, try and locate several restrooms that are not used very often; especially for those days which are a bit rough.   Remember, if you are in the United States , there is the Family Leave Act that allows you to take time off when you need to without jeopardizing your job. Of course, you will not get paid for that time either. I know people that have done this and just taken off several hours per week when they weren’t feeling well.   Dating and Relationships   Many ask, “When is the best time to tell the person you are dating about your UC?”   I waited to tell about my illness until I had gone out with this person for a couple of dates, and knew that I enjoyed his company. I didn’t want to wait to long, but I also found the subject a bit embarrassing. I was straightforward and explained about the illness I had. He hadn’t ever heard of UC before, but he appreciated my honesty. I told him that I couldn’t guarantee how long I’d be in remission. His response was, “Well, everyone has something.” And how right he was! It’s amazing how we perceive that we are the only one with an illness; he himself still battles two different illnesses.   One good point to remember; if a person you are dating has an adverse reaction to you having an illness…maybe that isn’t the person you need to be dating.   I never hesitate to tell him when I’m not feeling good, and he is always very compassionate and understanding. There are some days where “I feel like I hit the wall.” He’s never minded that I come home and crawl into bed. You should never feel “guilty” for not feeling well; your health always comes first, and I claim that should go both ways in a relationship.   On the subject of sex; you can have a very active sex life but having sex first thing in the morning is sometimes a bit rough on UC’ers.   Be very open about this with your partner…if they know your gut hurts, it’s not a good time. Afternoons or evenings are better for me (and I’m thinking probably for most UC’ers!) Remember, most partners want their partner to enjoy the experience, not be in pain. So communicate! I guarantee that open communication, not a guilty conscience makes for a far better relationship.   Tips for Everyday Life:   Eat several small meals during the day instead of larger meals. This way, you will maintain constant energy and it’s easier on your digestive system. If you are experiencing constant diarrhea, remember to hydrate! You also need to add electrolytes back into your system, so things like Vitamin Water or Gatorade can help with that. Keep wet wipes on hand – these are soothing and not as rough as toilet paper. If you are in fear of having an accident, try using a long panti-liner or adult protective wear.   This might help to decrease the anxiety. Keep a set of extra clothes in the car or your desk “just in case” an accident should occur. Take a probiotic to help get the good flora back into your gut. Recently many products have come out on the market with probiotics in them. Remember that you are in charge of your body. Find a good GI that will team together with you to strive for remission. Wash your hands frequently and don’t touch around the mouth, nose, or ears to help prevent colds and flu. Some folks find it helpful to keep a portable toilet in their car for “emergencies.” Ask your doctor for a “restroom” pass. Many doctors have these on hand for their GI patients, and it helps to use it when there is a line for the restroom, or when a restaurant or store won’t let you use the restroom. Find a good support group; the CCFA hold meetings in several locations throughout the world, or join an online support group such as HealingWell. The best feeling is to know there are others out there who will support you and share your symptoms, frustrations, and even good days!

Use good quality soft toilet roll, I use one with aloe vera and it's great! Don't be afraid to bring your bum wipes with you wherever you go. Know where every toilet is on your most common routes. If you need to drive a lot buy a portable chemical toilet. Carry spares clothers in your car, as well as toilet roll and wipes. Get a card to show that you have UC and need to use the toilet urgently, I've used toilets in all kinds of shops that normally wouldn't allow you, it's like a magic wand! Tell your specialist what you want him to do, be pushy, don't let him be complacent. If a medicine isn't really working insist on trying something else.

lonie already covered some of these items, but I think it's worth repeating them

People have said it already: learn all you can about UC, read what the ccfa has to offer, visit this site, etc.
Secondly, develop a relationship of give-and-take with your GI. The two of you need to work as partners. He/she needs to respect your ideas and vice versa.
And focus on what you are able to do. At first it is difficult to get your head around having a life-long disease, but process that as best you can and move on. Self pity won't help you and won't win you friends.
Last, keep your sense of humor!

Hey Colona, welcome to HealingWell. It sounds like you have been recently diagnosed. It's a rough dx, but I can assure you that most of us have been in your shoes, so please feel free to ask any questions you have and we will try to help...no question is too disgusting or embarrasing for us! It might be helpful for you to list your meds in your signature line so we can see what you are currently taking. Take care, and again...welcome aboard!

Sherry, we should ask to have this thread made sticky.