1st post. almost 30 years with the disease...

[SkinnyNinny]

...though really, the disease was always there, just hadn't shown up yet.

At least that's what I believe. Maybe it's easier to deal with and helps explain things from my childhood.

I found the link to this site on the cannabis culture website. I didn't know it existed. When the internet started up I really did a lot of research and got involved with newsgroups. People were very supportive and I contributed for a couple of years. But then I found most people were complaining a lot. Frankly I got tired of reading about everyone's problems. But then, I suppose at the time I was in remission and trying to live life. Trying to forget I had a disease.

Well, time flew by and here I am. I'm not in remission any more, and I am older and maybe a bit wiser. Been through a lot of ups and downs. I've suffered a lot of pain, both physical, mental, spiritual and whatever they call that pain when people you love give up on you and leave you.

But I'm not here to celebrate a pity party. Actually come to think of it I'm not sure exactly why I decided to register. Maybe I need an outlet to write down my thoughts, perhaps do some research and see what I can learn.

I'm alone, on my own, again. I probably want to commiserate with people who understand. I want to offer some comfort to those who might be losing hope. I know many have it worse than I do. I feel sad about the children especially and young people who have this disease.

I have another surgery coming up but it hasn't been scheduled yet. I'm on the waiting list, expecting my name to come up this fall. Typical Canadian health care, it's free but you have to wait for it unless it's an emergency.

In december I had emergency surgery two days before my girlfriend and I were to leave for a month vacation in Thailand. Lucky it happend at home of course, but still not good. To be honest I could feel it coming. Our relationship was on the rocks anyway. A lawyer, she is a high stress individual and with that and my terrible commute to work each day was taking its toll. She was trying to get me onto a raw food diet, it was her kick. Raw food always was difficult for me to digest but I was trying to make her happy and give it a try.

Previous surgery in 1992, removed my terminal ileum and a large bowel resection. Prior to that, drained an abscess on my rectum in 1985.

It would take forever to write everything I could say. Medical history, thoughts about the disease, what's helped and what didn't. Maybe over time and when I've read more posts from others in this forum.

 

[Angrybird]

Hello and welcome to the forum, you have definetly come to the right place for helpful info and more importantly support from a great bunch of people. Personally I think it is a great place to share the ups and down we experience in crohns and also in life as everyone here can totally understand how one can affect the other.

I am sorry to hear you have to have another surgery, will this be another resection? Has your doc mentioned anything med wise for after the op is done or will be a wait and see how things are afterwards?

Wishing you all the best and please keep us updated on how you are getting on.

AB
xx

 

[Gra]

Hi SkinnyNinny, I am new here too, like you I think this was coming for years. But symptoms came to a head about Christmas and my dr. started me on a series of blood tests, CT scans etc - now seeing a Gastroenterologist, he is treating me for crohns. Currently on Pednisalone. No ops on my gut to date, hoping I dont end up going down that path.

Gra

 

[David]

Wow, thank you so much for sharing your story. I could feel the emotion and sincerity and reflection really emanating from what you wrote.

I'm sorry you're not in remission anymore

It's great to have you here. I hope you do indeed share your wisdom with us.

See you around.

 

[SkinnyNinny]

Thanks for your words of support.

Gra, if I could do it over I'd try to avoid surgery if possible. Sometimes it's not always possible to avoid though - mine I think started in my appendix and since it wasn't treated it began to fester into the rest of my small intestine. But I felt great when I wasn't eating. If I had to do it again (and I can't, of course) but if it's possible, try to learn more about what kinds of foods your body likes. Does any particular food set you off? Do some foods sooth your gut? One thing I learned over time was that some things I ate my whole life weren't really that good for me. And I've read about other people who have had good fortune to learn about new kinds of foods that helped put them into remission. Like miso soup, and seaweed, and macrobiotic foods.

My next surgery will be to reverse my ileostomy. I am so thankful it is being reversed, though it is taking much longer than I expected. The doctor said three months after my operation in December, then six months, now it should be this fall.

The gastroenterologist has recommended either remicade or humira, he said if it were him it would be a no brainer. I'll be seeing him in June, I think he wants me to make a decision. But from what I've read so far the side effects look worse and worse. And fro what I understand, all my problems were from scar tissue that developed after my surgery in 1992, that slowly built up and created a blockage in December. My pain has been related to that stricture, and would act up about once or twice a month. I couldn't make a connection between the food I was eating, or stress, or other causes that made the stricture flare up and cause the pain. I'm still convinced that after the next surgery I should be able to figure it out. I'd rather deal with a bit of pain once and a while than worry about the side effects of those drugs (cancer, tumors...). Besides, I've seen comments from people who are taking those drugs and they are complaining about flare ups anyway - so I know they are not cures.

More reading to do. Good luck with your battles, relax, try not to stress out, and thanks for listening!

SN