uc-Doomed?

You have to realize that many who are here are worst case scenarios. Many of those who are in remission don't post becuase they are too busy living their lives. I've had this disease 10 yrs and have spent that majority of that in remission. There are ups and downs but even with those I am a generally happy person. I love my life, my husband, my home...and I just happen to have UC. It took a long time (and a bit of therapy) to get back my perspective. It seems now that this is your life but UC is not your life, it may be a part of it but it's not everything.

Your GI is wrong it is a big deal. It is a chronic illness. That doesn't mean that you will always be sick.

Try to remember that this forum is not a representative of life with UC. There are many people out there with this disease who are in remission and don't have the problems of many of us here. The internet can be dangerous in that way. I would suggest finding someone to talk to about living with a chronic illness. Check ut CCFA.org they have support groups all over the country, or look into therapy, or just find a very understanding friend...it helps.

Good luck!

Maddi, I totally agree with Kelly. What you see on here is many people that are actively suffering from a flare. What you don't see is the untold hundreds/thousands that are out there enjoying life and not letting this disease get the best of them. It took me a long time too to come to terms of my disease. I view myself as a mother, wife, and gma caretaker who has a disease. I don't let this disease define who I am. I still get out there and do things such and hanging out with friends, go shopping, movies, dinners, parties etc. Even if I'm feeling like crap, I try to get out of the house. It makes me feel a ton better emotionally just to get out. It's a challenge when you're flaring that's for sure!

I have a suggestion for you about meeting others in your area that may have an IBD. Go to your local grocery store, hardware store or newspaper and post an ad. Something to the effect that if you have an IBD and wish to create a local support group to have them call you. You might be surprised to learn that there are more in your area then you thought. Last September, I went to the local CCFA chapter Guts and Glory walk. They handed out t-shirts to the participants. I was driving my daughter to school one day after the walk and I seen someone wearing one of those t-shirts right in my neighborhood. My community is not a large one so I was surprised to see someone that may of had an IBD.

Maddi1
I have had UC since I was fifteen years old. I am now 62.

I have had some bad spells, and times when I was frustrated and down. But I still was able to live a full life. Went to college, got my degree and taught school for nearly forty years. And I had a good attendance record. I would actually get stubborn and say NO, to my UC. I had these little talks with myself and I determined I was not going to let the disease win.

Hang in there. My worse times were from 15 to about 30 (worst flares but I also did have some remission time). After 30 my flares were less and less frequent and lasted shorter. It can get better.

Maddi -
I was devastated when I was diagnosed with Proctitis almost 8 years ago. Unfortunately for me, it has spread and I now have pancolitis. I thought my life was over. I couldn't have been more wrong, as my life was just beginning. I've had more good days than bad days so if I look at it that way, my life was far from over.

I have a 3 year old and also wondered, "How in the he!! will I be able to look after her when I'm flaring." You just do. You will begin to know your body and what each feeling means. You'll begin to realize that when this feeling comes over you, you have 10 minutes to find a bathroom or 1 minute. You'll scope out bathrooms along your routes and in every store just in case the "I gotta go now" feelingg strikes. Yes, it is annoying, but not impossible. And I agree that what you are reading her are people who are actively flaring and have a more advanced disease. Mine is actually very mild so my life hasn't changed too too much. I'm still very active and try to life as normal of a life as I can. You can do.

Ask your DH to help do certain things when you are flaring to help take away some of the stress. Adding to your stress doesn't help so trying to push things off on your DH or anyone who will help will help. I hope everyone has a DH like mine and is so supportive with me and this disease. Its funny. My 3 year old even helps me out when I'm flaring. I have always explained to her that I have a sick bum. All I have to say is, "Mommy's bum is hurting" and she turns into the mom and wants to take care of me. She knows that when it is bad that I can't play with her like she wants and she goes and bugs Daddy. It is really too cute.

Good luck and if you ever need to talk, this is the best place to come. I always do.

Maddi - where are you located? There might be ple on the forum that are near you!

Wow all! What great words of wisdom! We all need a reminder at times that life is not all about UC. That we are other things beside UCers!

I don't have children, but I have dogs. When I was at my sickest, they are what got me out of bed. They NEEDED me to move and not mope around in my misery. Plus, that unconditional love never hurts!

Hang in there! And vent away :) We're great a listening!

I am doing very aggressive study on proctitis now. I am trying Chinese Medicine now. I will keep you updated. Please keep us updated too. Together, we will win. Peter

Maddi, you are not alone. When I first got ill with UC 4 and a half years ago I was a single parent with 2 children aged 2 and 6 months. Since then I have been up and down with several flare ups. Luckily I have been in constant remission now for 18 months, but it took me a long time and alot of experimenting with medication to finally get here. The worst thing for me was how much of a failure I felt as a mum. Sometimes I couldn't even get out of bed, let alone look after them. Toilet times in my house became a public affair - the amount of time spent in the loo meant that I could never shut the door. Myself and the children would spend hours together in the bathroom, them playing with their toys either on the floor or in the bath with me sitting on the loo! They are 7 and 5 now, and have grown up so far with the knowledge that mummy has tummy problems, and sometimes I am ill. But I do not feel guilty about this anymore. Both me, my partner (of 3 years) and my children have learnt to live with my condition, and we all work together as a team. I too live too far away from any support groups. At first I couldn't talk to my partner about how I was feeling, but learnt to open up to him and realised that I didn't have to be strong all of the time. Sometimes, Maddi, you may feel so bad that you just want to curl up in the corner and die. But your son and partner will keep you going. It doesn't matter if somedays you are not supermum or superwife. Just do whatever you can, and enjoy life and the times that you have with your family because little else matters. And I promise you, things will get better. I am hoping to train to be a high school teacher next year. This would never have even crossed my mind two years ago. Good luck x

hi
wanted to say that i was diagnosed w/ proctitis when i was 19-- that initail flare was under control within 8 months and i didn't get another one until about 9 years later. certainly, as some have posted, there are 'bad times' -- and i've had them recently myself--but with a supportive family and a good sense of humour (my husband likely never thought he would be talking about poop so much with his wife), its manageable. i now have a 10 mos old son and having a great time! just take the opportunity to start (if you're not already) eating well and taking note of what foods really don't agree w/ you and stay away from them. i have a bad habit of going back to the 'bad' stuff (coffee, wine, spicy stuff) when i'm in remission and usually pay the price....

good luck!

maddi1,

I believe ulcerative colitis can be controlled or it's symptoms reduced through diet. This is how I am able to get on with my life and do things, which I couldn't do before the diet. It's not a solution and it may not work for everyone, but it works for me...I'm not on any meds and my bm's are about 4 or 5 a day.

NBT