Thread: Wondering

Wondering if anyone here knows a person living with ulcerative colitis, or is perhaps dealing with the disease themselves ... I was diagnosed about three weeks ago with a moderate-severe form called pancolitis (meaning the entire colon is affected) after an extended period of being sick and bedridden. I am just wondering how to get through. It is very difficult. I'm 32 and lately it has been hard to ignore the feeling that something very ... vital was taken, almost robbed, from me. In the span of about 4 months I've lost nearly sixty pounds.

I don't know. To make this somehow relevant to writing, I wrote the first draft to my first novella in the days between flare-ups, unknowingly (I've only had two so far). There was about 50 days where I wrote the book, a little bit every day, in the bliss between these sicknesses, and it was during that time when I felt like I could actually do this writing thing. Like I could actually write books and be happy and be an author.

But now the future does not look so well.

How does one keep themself together in times like this?

One keeps oneself together by keepin on keepin on. I haven't had ulcerative colitis, but I nearly died of pneumonia and complications. I lost 80 lbs in 45 days of medically induced coma. Others here have medical situations also.
I found that, once I was able to speak to people, that communicating my feelings had some surcease in and of itself. I hope that you find the same. I am sorry I cannot help you specifically but I can commiserate somewhat. Especially as I'm laboring toward that same goal, writing books. I have three years in which to make that happen.
Good luck to you.

Originally Posted by moderan

I have three years in which to make that happen.

¿Qué?

I was diagnosed with Crohn's disease (sister disease of Ulcerative Colitis) this august after being hospitalised after a colonoscopy.
you could look on it as rather than something being taken, think of it as a new start. You know what is wrong, you can now go about fixing it and get your life back on track.

I am assuming you were put on medications to help treat the inflammation and will then be moved to something else with a view of getting it into remission, but as I am not familiar with the treatment for Colitis I may be wrong (however, as far as I am aware a lot of treatment is similar)

In terms of my own treatment I was put on a high dose of steroids, tapering down weekly until I was off them (steroids should be mostly used for short term treatments if possible, if you are on them long term (majority of the year and so on) talk to your doctor about calcium suppliments as they can cause the loss of bone density in the long run. I was then started on Imuran, which is an immunosuppressant.

I was lucky in that my first flare up pretty much hospitalised me due to it being within a few hours of the colonoscopy so there was some concern that something was damaged during the scope and that I have not had any real reactions to my medication. Other than steroids, they are a pain if you are on them, just remeber side effects are temporary and they are helping (unless of course, you get severe side effects then contact the doctor of course) Also, they can cause weight gain, which may help you start to feel normal again after losing a large amount of weight very quickly.

One of the things that can trigger flare ups is food so maybe keep a food diary so you can track what foods don't agree with you, smoking can also be a trigger as can alcohol but the problem with these illnesses is that there are no real rules as to what can cause flare ups. I could eat apples and be fine, someone else could eat them and need to be hospitalised. If you were unsure how or where to start changing your diet you could always research and find a dietician in your area that has some experience with IBD (make sure they know it's inflammatory bowel disorders, not irratable, two different things)

Good diet will help you regain your weight and you should do some exercise once you are well so that if you have a flare up, your body will bounce back quickly. If you havn't already had some already perhaps ask your doctor or consultant for some blood tests on your nutrient levels (they may also be able to recommend a good dietician) to make sure you are not deficient in any vitamins/minerals/proteins and the like, your body might have problems absorbing nutrients so you may need to increase your intake of certain foods to balance it out.

For example, though I had no real symptoms of Crohn's such as pain or weightloss (I was however passing blood frequently), I was still quite deficient in protein which I would eat a lot of so though you may not show signs of being deficient your levels of things could be low.

There are websites out there that deal specifically with Crohn's and Ulcerative Colitis, so you could seek out a few if you wanted, but again it can become a bit scary reading about people having all these things done to them, just remember that it may never come to that with you.
They can be helpful as you can discuss your symptoms/problems with no real need for embarressement as the people there have been through the same thing or have family who have so they are not averse to talking about it in all it's details.

I had a look around Crohns Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn's Disease when I was first diagnosed there was lots of information I found useful, there is a sub forum for Ulcerative Colitis, though you may be able to find somewhere that has more people if you look around the web.

I hope I helped and if you have any questions or anything feel free to ask/PM.

Being able to talk to others who can truly understand because they are experiencing the same challenges goes a long way towards making one feel better. I ditto what the others have already said.

You might take a look at the Inspire website and see if a support group there suits your needs while bearing in mind:

it can become a bit scary reading about people having all these things done to them, just remember that it may never come to that with you.

Talk about it and educate yourself about the disease, both will help you to feel better.

nerot