Getting on with life

[Augustus]

Hello all, I just recently joined the forum and I have been avidly browsing through the site and it has helped me cope in a lot of ways, so thank you.

Now I am currently 18 years old about to be 19 in 1 month and I have been a UC sufferer since I was 15 though I do remember myself having symptoms a while before that.

Although my doctor says my case is only mild, it doesn't feel that way to me. I have battled with diarrhea, blood and other symptoms for a majority of my life since being diagnosed.

I use to live a very active and lively lifestyle but everything changed.
When I was first diagnosed I had a few accidents when hanging around with friends because of the lack of facilities and that made me embarrassed and scarred me for life... Needless to say I do not have any further contact with them. I dropped out of school because of the disease and I have always resented myself for being too weak and letting this thing beat me.

I continued on with life later finishing my year 10 schooling here in Australia to an equivalent at an institution called TAFE, which I was very proud of, though the only reason I was able to achieve that is because my classes were very flexible and they allowed me to do my studies care free and with minimal deadlines.

My parents want me to do something with my life and I have been trying to put into as much effort as I can to make them proud but ever since this has happened to me I have found no motivation and a whole lot of anxiety when it comes to going out and working/studying. I have dropped out of multiple courses because I couldn't complete their attendance and I haven't really tried to be a productive citizen in society at all.

I am wasting my life because I cannot find the strength in me to be able to get back out there and give it my all, I feel lonely, useless and trapped and I don't want to feel like that any longer.

Sorry for the sob story and I am also out of practice of writing, I haven't really talked to anyone about how I am feeling and it was good to get some of it off my chest..

Now for the last part... Does anyone have any advice on how they got on with their lives after being affected by IBD and other diseases because quite frankly I am feeling overwhelmed by it all.

Thank you for reading my story.

 

[DJW]

Hi and welcome. You've been in a very difficult place. Are you currently on meds? Is the disease under or out of control. In my situation it was about getting it under control as a starting point. Have you considered councilng?
Sending you my support.

 

[Jennifer Scotland]

Hi av just joined today. read ur post and sounded a lot like how a felt at 18, I am 28 now and had surgery this week which has failed so not good place either just now. I lost contact with friends at ur age cause of the disease it changed me as a person took ma confidence away. My running to the toilet stopped me getting out about for month at time. The only treatment that worked for me was inflexmab and metacarpuire tables it was life changing for me. I was far from normal but help the running to toilet and the blood took a while but persevered with injections and I am now remission how ever have a fistulas due to the damage caused with years of diarrhoea so know left trying to deal with that. I wanted to go art school but collage was nightmare had more days off than a was there and like u had accidents so gave up totally in the end after two years gave up cause the stress made the disease worse. It took 6 year on off these treatment to get full remission but finally for a couple years could get out about go on holidays abroad drink with friends b bit normal again. Now i can can days weeks with normal days and not constantly on the toilet Most important thing ur health and happiness so don't push ur self to hard and don't b hard on ur self everybody will feel the same at points in there life trying to live with this disease it hard and a constant battle. If u need any info on treatment ect just ask hope this helps

 

[Augustus]

Hi and welcome. You've been in a very difficult place. Are you currently on meds? Is the disease under or out of control. In my situation it was about getting it under control as a starting point. Have you considered councilng?
Sending you my support.

Yes I am currently on Imuran, Mezovant and salofalk suppositories.

 

[David]

Hi Augustus and welcome to the community. I'm so sorry you're having such a rough time with your UC My heart goes out to you.

Like DJW, I was curious how well your current treatment regimen controls your disease? What are your current symptoms?

All my best to you.

 

[Augustus]

My current treatment regimen use to control my symptoms very well, had very few bad days and when I did have a bad flare it would only last a day or two.

Now though my treatment seems to be becoming more less effective, I have been having periods in succession where in a week I will be fine for 3 or so days then I will flare which will last the same amount of time. It is hard to plan a week out because I never know when my flare will kick up again.

Current symptoms during a flare are
-Bloody Diarrhea
-Stomach cramps
-Pain during a bowel movement
-All round general fatigue

 

[RCJ]

I feel your pain man. Hope it gets better for you soon!

 

[mdd]

Hi Welcome we are for you! One day at a time I say it always to people. Because when people ask how are you. They really do not want to hear your,(our) story. So im taking it one day at a time. And it helps me! to think that way. I got thought it today. its not a quick fix. like getting a gall blatter out! I hope this helps! :smile::heart:

 

[highlandsrock]

Hi Augustus, I'm sorry to hear what you've been going through. I'd take issue with your doctor saying you have a "mild" case. They should be looking beyond just the physical symptoms and seeing how it affects your whole lifestyle. From what you describe "mild" does you a big dis-service and I can understand how this must make you feel. Have they tried the "it's all in the mind" routine yet?

Personally my life got back on track once I found the right meds and that lasted pretty well for at least twenty years. I still get very tired at times and have regular B12 injections which seem to help (for Crohns).

You'll get plenty of support on this fantastic forum and there's a an active IBD community on Twitter if you need to let off steam.

Wishing you well