Forgetting about the disease

[steph]

forgetting about the disease

Good Morning all, I hope everyone is doing well. I have only been diagnosed w/ crohn's for about 1.5 yrs now. 2006 was a write off, but since having remicade it seems that the crohn's has disappeared. everything that was taken from me - was returned. I can run, keep up w/ my gym visits, and I can work 5 days a week. I'm doing insurance now - ditched the dental assisting (the dentist was a prick). anyways - it even shows in my blood - my hemogoblin levels are normal, and they havn't been for 10 years. My concern is that I sometimes forget that I have a serious IBD disease. which is really great - except that I wonder if I am doing things that will affect me in the long term; like my eating habits and forgetting to take meds. but then i say, just enjoy the pleasure of living without pain and fatigue while i am and can.
for those of you with more experience - do you think it is good to just enjoy the simple pleasures while you can and worry about the pain when it is there. i am only 27 and many years and experiences to go. any thoughts are much appreciated.
take good care fellow crohnies.

 

[ruthymg]

Hi Steph, I had a 3 year period of remission and I too almost forgot I had crohns. I could eat what I wanted and do all the things I couldn't have done before I was in remission. I truly believe that we should take advantage of the remission periods as we have so much time which is filled with watching what we eat and do.

Ruth

 

[robert.k]

I like reading about stories of people going into remission... it often seems like there aren't enough of these stories going on around here! But I guess people are more inclined to share bad news rather than good news when it comes to support forums for diseases/ailments.

I'm still very new to this disease, I've been told by one doctor that I have Crohn's disease, but my current doctor says it's colitis... either way, I've been suffering for about a year, with a remission period of about 4 months where I was doing very well, it was almost as if I had never had problems! Everything was perfect. I'm suffering through a really bad flare-up right now, though.

We'll see if my gastroenterologist recommends that I use Remicade in the future. He told me that once you begin Remicade treatments, that you never ever come off. Is that true? He also told me it's $3000 (CAN) per administration. So, you start off with one shot, then a second shot 4 weeks after, then a third shot 6 weeks after, than subsequent shots every 8 weeks for the rest of your life. Is that what you've also been told?

To answer the actual question you asked and to not completely derail your thread, I'd say you should enjoy things during this time that you might not be able to enjoy later if you experience a recurrence of your symptoms. That's not to say you should be negligent with your health, but have some food that's 'semi-junkie', if you know what I mean. I don't believe food causes this disease, anyways...

 

[Nancy Lee]

Hi Steph!
It's so good to hear you are doing so well...
and by all means live life to the fullest during such times!
I hope your remission goes on for a long long time.
Sending heart hugs your way.

Robert~Sorry I can't answer your question on the remicade
but I'm sure someone here in the Forum can...and will.

 

[Kev]

I'll toss in my 2 cents worth.. Bear in mind the jury is still out on whether I've got CD
or UC at this stage.. But, given my life history, my doctors (GI) currrent theory is that
I've had this for 20 odd years, with spans of remission or symptom free living that = 10 years, then 5 years +. In those periods, without being diagnosed, I lived and ate like a normal person. I drank alcohol, only occasionally to excess. I ate junk food at periodic occasions.. I wasn't a health nut, but in raising my kids I prepared healthy foods on a day by day basis, but with frequent junkets to junk food havens, or is that heaven? Like, Mcdonalds with the boys almost each weekend, plus the traditional pizza and a movie on Fridays.. Weekend mornings consisted of big breakfasts of ham & eggs, homefries, greasy bacon, lots of toast with butter..
My workweek consisted of carafes of coffee, the occasional donut or similar junkie
snacks. Where am I going with all of this? Why was I able to attain or maintain a 10 year or so remission while eating/drinking like this when, after eating & living like a monk in a monastery for the past 2 years I haven't been able to re-attain a remission of any note? Why, Lord, why? Still, doctor knows best. She thinks the best course of action is to live with a strict dietary regimen to reduce or minimize any long term stress on my already stressed digestion system. Do I (or you) need junk food that bad that you're ready to roll the dice and gamble? Perhaps lose??

Food for thought... or thought for food. Anyway, that's just my two cents worth..

 

[Jeff D.]

Good words Kev. I have been in remission for the most part of a year now. The past two weeks though and I have been having what I am calling a mini flare. It is probably a bug that normally lasts people two to four days but for me it is taking much longer since the Crohn's can do this some days. But I have normally eaten anything served to me. Although I limit myself on popcorn and nuts to just a few but I only have problems peanuts.

Just my life but I think I am going to try to eat healthier and of course a splurge for a day is healthy because it allows you to forget your diet or whatever.

Good luck

 

[tinglebell]

Congrats on your remission steph. By all means forget about the crohn's and go on with your life. I would avoid nsaid's and any foods that you have had problems with. For many years I took no meds and no special diet, and close friends at work were shocked when I told them I had crohn's (after knowing them for 2 or 3 years) Of course I always had freq bathroom trips but that is something I just got used to. I also had 3 children in a 4 yr span and never felt better, even had close to a normal BM. I am so happy to hear of your great experience with remicade, since my GI wants me to take it now. And I'm waiting with a lot of anxiety to hear about the length you have to be on it. My GI just said "You will have the 3 doses 2, 4 and 6 weeks, and then you may have to take it every 8 weeks for maintainance" Then I went into shock when he said it costs about $5,000 per dose. All I know is, after gaining almost 20 lbs. on prednisone and entocort, I am willing to try another treatment, and go to the poorhouse even just paying co-pays etc. And if it wern't for the darned neck and finger pain, (arthritis), I would probably try to go off everything. Are you off prednisone? Does remicade make you hungry all the time like steroids do? Have you had any side effects?

 

[laura2002]

I've had Crohn's for 6 years now, and have gone through a few remissions myself. It's so wonderful! Definitley enjoy every moment of it and savor all the blessings that come with it! Living with Crohn's can be so difficult, hang on to the great days when you have them, and make the most of them.

I haven't been doing too well myself lately, but today for some reason I felt pretty good. So on the spur of the moment, I told the hubby that we we're taking the kids our to dinner - all together - for a change! It was really great to watch our girls have fun and be able to BE with them while doing it.

As for the remicade questions, your doctor is right about the quantity of the treatments, and going off the Remicade. I started Remicade in 2002, felt completely better (like a normal human being!), and took the chance of going off of it to get pregnant (we suspected the Remicade was preventing this for us). 2 kids later, I tried going back on Remicade last year, and was a complete disaster. I've become 'allergic' to it now, and can't go back on it, which is a HUGE bummer because it worked soooo well for me. Now we're trying to find which pill medication will work for me, which we haven't found yet. If you can take Remicade, it worked wonders for me. Plus, it's a nice break to be able to go and sit for a few hours and catch up on some reading while you get your infusion!

 

[steph]

thanks for all your replies guys, brought happy tears to my eyes;-) remicade is $3000 CDN per infusion and for me - I did 3 initial infusions and then from there you and your dr will decided if you need to be on maintence. so far i have on needed it - it has been 2 months since my last infusion, which is about when i would have gotten a maintence shot. i have fisulizing CD - my fistulas seem to have stopped draining and my joints don't get inflamed anymore. Pharma-care paid for my remicade treatments - which is really nice. if you have access to those benefits you should look into it. prednisone made me gain 20 lbs too - which i am trying too loose now that i can go to the gym. remicade doesn't have side effects like that - infact i havn't had any. you should do some research on it though - it does have some serious side effects. i figured the risk was worth the results. and remicade has only been used for CD in canada for about 5 years.
thanks again, I hope that i helped a little w/ your questions about remicade.
take care and stay strong.

 

[Susans]

I was diagnosed with UC in 2000 and went into remission until March of 2006. When the symptoms starting reappearing I ignored them hoping that they would go away. Of course we all know that does not happen. I became really sick and a colonoscopy discovered that I have Crohn's. After having a a flare for over a year, 2 hospital visits, a variety of different meds that I can't tolerate and taking Pred 5 times in a year I am ready to feel good again. I am starting my first Remicade infusion on Friday and I am a little nervous. I am worried about side effects but my doc says that the pred is doing more damage than the remicade.

 

[Evagation]

Steph--I hope that receiving advice from someone a year younger than you doesn't seem too odd!

I was diagnosed with Crohn's in 1989--so it's been the predominate theme in my life. I'm now practicing what I like to call the Responsible Remission. I've been in remission over a year, now (FULL remission, which is a first for me--I've only ever had one part of my system doing fine but another part completely afflicted by CD).

I love french fries but I only let myself have them once a month. Since my CD hates french fries. Lactaid and soy products in place of regular milk. Lactaid tablets for on the go. Vitamins, lots of exercise. Basically what everyone should do to stay healthy--except with more fiber supplements. NO COFFEE. Luckily, I hate the taste of the stuff but, when I worked at Starbucks and was forced to taste coffee, it always did something bad with my CD. No carbonated beverages, unless it's ginger ale, or something soothing.

Sadly, little-to-no alcohol. No nuts, ever. And I'll just stop because this will turn into a huge diet diatribe, and that's not what you asked for.

But I enjoy the heck out of my life when I'm feeling good. I'm lucky to live in California, and the beach is only a few hours drive away. Along with L.A. and San Francisco (I'm almost directly in the middle of CA--so everything worth going to is only a few hours away in any direction). My husband and I are talking about carpooling to the beach tomorrow, spending the night with a friend, and coming back Sunday. I try to travel as much as possible when I'm healthy because it's so hard to travel during a flare.

Have fun. Last year I took a few months of a belly dancing class and it was great. I'm signing up for some more this year. I savor every single meal that I eat--I think it's something healthy people take for granted far too much. Since, if I'm sick, I'm on the Ensure and bland foods only, diet. But when I'm healthy, I have no problem with holding up an entire table of fast eaters, who are ready to leave, while I sit and savor my salmon dinner. If they gripe, I just tell them that I don't get to eat like this all of the time, so I'm going to enjoy it.

It's the little things, I suppose, that make my remissions great. Having enough energy to do some house keeping and cook dinner with my husband. To feel good enough to plug into my ipod and sing and dance my way around the house. To go clothes shopping! My Mom still loves to take me shopping (and I still love to have her to because she'll buy me a few things) but most of them time I dread going to a mall, or clothing store. I never have the energy to dig through racks of clothes, try on all of the clothes, and then start over again in another store.

I guess you can say that I savor the normalcy of my life when I'm in remission. All of those little things.

Katie.