Question - is this a life sentence?

[nicknack]

...the angle here is not whether it is "life threatening" (although I understand that of course unlucky people can get severe issues)....

My question is, how many stories are there of people who suffer for a year or two then suddenly "get better" or suddenly a medicine "cures them"

any rays of hope out there?

 

[Mark33180]

When i was first diagnosed, i went into the hospital and i was so infected that they said if i had come in any later i could have died. But i never showed 1 sign of infection, no increased temp or anything, it was jsut pain. However once i had my surgery and the doctors cleaned out the infection(before i was offically diagnosed) then i didn't have one bit of trouble for the next 3 years. So i guess what i am saying is that you can go into a remission where you are back to normal. Just watch out for the things that might cause trouble with your body and take good care of yourself.

 

[pb4]

Medicine won't necessarily "cure" you, it may put you into remission and it vaires from person to person as well, some have one or 2 flare ups and never have another, some flare and stay flared their entire life or with short-lived remissions.

This disease can certainly have a mind of it's own that's for sure.

 

[Cookie]

I agree with what Mark said. The best thing you can do is to listen to your body and take good care of yourself. I don't think anyone can predict when and why they will fall into a flare, but I think that if you try to eat right, get lots of rest and exercise, and avoid stress as much as possible, your chances of stying in remission are a lot better.

 

[kello82]

yup, like the others said, everyone is different and one thing that will give one patient a good long remission will be a bust for the next person.
me personally, i cannot remember a day of my life that i wasnt in pain. some have been better than others, remi made the pain less frequent, but it was still always there.
now i just had a temp ileostomy done and guess what? im in pain but its different pain! i dont have the pain in my colon that i have had all my life, now it is pains from the surgery.
so hey maybe this is it for me right now, my remission once i heal from the surgery, but who knows? everyone has their own times.

but to answer your question: NO. this is not a life sentence.

even if there is worst case scenario and you dont get remission, you can still have a good and happy life! its possible! pain free or not, you can be happy and successful

 

[teeny5]

You can get better for sure. There is no cure. I think it is very rare that someone dies from the disease. My mom had a friend whose son had it and died. His was very bad, but he also refused to take care of himself and not eat the things that aggravated it. He would way over eat on things he knew were hard for him to eat and then be sick for a week after. Eventually I think he just wore his body out. Oh by the way, he refused to take any of his meds too.

 

[gratefuljackie]

I'd really love to tell you that it's all going to be ok.. but i don't know what ok is for you. Ok for me use to be I wanted a cure and this disease to be over like a cold. But it won't happen. My greatest fear is that I would die from it. But I am powerless over that too !!! )

For me, I found one thing that is not focused on enough is the emotional/psychological turmoil this disease causes. Lots of fear, anger, sadness frustration.. all those emotions. I am reading a book called Crohn's and Colitis : Understanding and Managing IBD it's by Dr. A Hillary Steinhart of Mount Sinai Hospital.
The section I found most helpful was the section called Psycological Support. It had questions in there that I was too afradi to ask but certainly had in my head. This helped my gears and i was able to read some more of the book. Frank;ly, I jsut wanted to crawl under the covers and not ask or read anything. That wasn't helping except to perpetuate my fears even more.
The book that helped me the **MOST** called Sick and tired of Feeling Sick and Tired: Living with Invisable Chronic Illness by Paul Donoghue and Mary Seigel. It was so on the money. Both the writers have invisilbe chronic illnesses and are professionals. One is a psychologist who helps others like her.
Here's a small review of the book:" Unlike the common cold, invisible chronic illness has no noticeable symptoms; therefore many sufferers have to not only endure physical pain, but also listen to the negative reactions from others. Those who suffer from chronic fatigue, pain and other miseries must learn to rethink and communicate with others about their illnesses;

Take care !!

 

[Serafina]

Don't think of a cure, think of remission. Sometimes you'll be flaring and you'll be an ill person who is sometimes well. Sometimes you'll be in remission, and you'll be a well person who is sometimes ill.

This disease is so individual, nobody can tell you for certain how it's going to be.

 

[danman]

I hate to be a pessimist, I rarely think this way.... but the answer is yes.

We can get remission, but it's still important to take the meds prescribed. The illness is always with us. There is no magic cure, so is it a life sentence...? yes.

Sorry for being class pessimist.

 

[fenway1971]

I'm going to be class optimist.

Is it a life sentence? Maybe. My mom had UC - had surgery to remove her colon because her only options were that or unreal long-term steroid use. Many of the drugs today were unavailable then. Who knows what's on the horizon 10-20 years from now.

If you let the disease consume you, it will. But, I choose to remain positive and focus on lifestyle changes that allow me to live life to its fullest and show this @#^&*% disease who's boss.

Eat healthy, exercise, take vitamins, take your meds and smile every day.

 

[pb4]

hey fenway, in reading your reply above we actually have those 2 things in common, my mom also has UC and I have crohn's colitis (CD affecting the colon).

I agree we don't know what is on the horizon and I like to think that a cure is (and hopefully in my life-time) but as of now it pretty much is a life-sentence until they find a cure or a much better way of controlling the disease for everyone not just for some patients.

I also encourage eating completely healthy (no processed, junky foods/beverages or fast-foods, I exercise regularly and take my natural anti-inflammatories and vitamins B12, C-Calcium Ascorbate and A.

 

[fenway1971]

that's interesting, pb4. my mom had the surgery to remove her colon. she's living fine now. i don't have that option as mine is clearly crohn's and i have mild inflammation at end of small intestine

 

[pb4]

My mom didn't get her Uc until AFTER I got sick with my CD, strange eh? This is why I alsways say I feel there's a genetic factor, it's just a case of it being triggered, had my mom never had her UC triggered then to date I'd be the only one in my family with an IBD...crazy disease that's for sure...glad your mom is doing well now, even wearing a bag for the rest of your life (no matter what age) would truly be quite an adjustment in ones life but most people that end up having their colons removed say it was the best thing they'd ever done.

Hey fenway, I also just noticed now that we both have sensitivity/allergy to ASA drugs, mind you with all those oral RX I'm either non-responsive or allergic to them, thank goodness I found naturals that help.

 

[fenway1971]

pb4, are we the same person? LOL.

what naturals do you use? see my signature for my stuff.

 

[pb4]

LOL fenway, we just might be...

I use bee propolis, chamomile tea, probiotics, fibre supplements, vitamins A, C-Calcium Ascorbate, altered my diet (as I mentioned above no junk or processed anything) and exercise regularly. I take B12 too but it doesn't directly aid with my CD, you know, just one of those things many of us IBDers need to supplement with cuz we tend to have issues with poor absorption of it via diet alone.

 

[teeny5]

The most trying thing I have gone through with the disease (other than side affects of meds and pain) has been the emotional toll. Being sick for months on end was exhausting. You just get sick and tired of being sick! I don't think that people who have never had a long illness or chronic illness understand how hard it is to be sick for that long. Having a cold for 2 weeks is by far a picnic compared to something that lasts for months and even years for some. I would get frustrated when it would seem that people would "forget" about my disease. Not that I wanted attention for it, but I guess it becomes so central to your life, and even changes it, that you kinda get frustrated that someone close to you could seemingly forget about what you are going through. I found myself even resenting people who didn't have to go through what I was going through. It seemed right when my life was all coming together, a career and planning a family, it all came crashing down.

I think many people have an hard time with it emotionally at first. I too had fears that I would be in pain forever and that it would never get better. My best advice is to take it one day at a time. I think your attitude about the whole thing is key. Sure I have bad days, but I will not let the disease ruin my life. You can live with it. You may have to change your eating habits and knowing where the closest bathroom is may become a priority, but I figure it isn't the worst thing anyone has had to live with.

 

[cheeky]

you can go into remission, but not be cured...at least not yet.

when i said to my doctor 'i didn't realize i'd have to be on medication for the rest of my life' she reminded me that there's still a possibility that a cure could be found eventually, as they continue to do research.

so maybe one day there will be a cure.

 

[merrywidow]

I hate to be a pessimist, I rarely think this way.... but the answer is yes.

We can get remission, but it's still important to take the meds prescribed. The illness is always with us. There is no magic cure, so is it a life sentence...? yes.

Sorry for being class pessimist.

same thoughts here, but it could be worse couldnt it. crohns isnt terminal with a time limit is it? you just have to make the most of what we have.
sharon xx

 

[danman]

True Sharon, it must always be in the back of our mind too. Even during any period of remission.

We still have to always look out for ourselves. That's why I took the question of the thread literally.