Hi everybody

[dizzyd]

Hi, I am new here...even though I have been lurking for quite some time. I was diagnosed 4 years ago and had surgery not long after. I consider myself lucky as I have not had any symptoms since and am able to eat a very healthy diet. My specialist says it's probably just a matter of time and that it could be back now and I just don't have the signs yet?? Cheerful guy isn't he lol. He also said working out is also probably contributing to my staying in remission. Anyway, even though I am currently healthy I like to keep up on the news about Crohns and hope to be able to contribute to this site...even if it's just a compassionate ear.

 

[Kev]

Hey DizzyD... Are you a jazz fan, per chance? Anyway, welcome to the forum. It's great to hear from someone who is symptom free.. A healthy diet and an exercise regime are both possible candidates to explain your current symptom free status. I do hope it stays that way; and that your story inspires others to eat healty and exercise. As for lurking around, no problem. we don't bite one another on here; AND it can be difficult for someone to 'come out (as it were) in public on here. (I dunno if that applies to you or not.. it used to apply to me)..

 

[dizzyd]

Thanks Kev. I'm not really into jazz music...even though I have a saxaphone, which one day I am going to learn to play.:lol:

 

[michels1]

Welcome dizzyd and congrats for doing so well. Thanks for your post, it shows us we have something to hold on to!

 

[Guest]

hi and welcome, dizzy really good to hear how well you're doing, its inspiring for us all!

i had a similar record, surgery then around 20 years crohns-free. it has recurred now, but only in one location, and a small but extremely active patch which is taking some calming down with predsol.

 

[dizzyd]

Thanks for the welcome. At first I found it hard to accept that crohns is a chronic disease. I have accepted the fact that my health is good now but could change very quickly. I think that's why I try so hard to eat healthy and stay in shape. I know not eating and wasting away could happen again.
Dingbat 20 years remission that's great. I remember reading that some people get it back right after surgery. (I was very afraid of that) Were you on maintenance drugs during that period?

 

[Guest]

no - i know i was very lucky, dizzy. the only drugs i have taken over the years are rehydration powders as i lose electrolytes easily after the surgery, and at one time i had an abdominal hernia, again due to surgery, for which i took antispasmodics, then had it repaired surgically.

i had regular barium swallows and a couple of ct scans along the years, plus blood tests - and all was ok, until last year.

i think i took my good health for granted once a couple of years had passed

 

[elp888]

After surgery I was in remission for 12 years - so yes, there's always hope

 

[Keara07]

Hi dizzyd - welcome! Glad you are feeling ok. I just had my first resection (and of course, hopeful last - nice to see these other posts of long remissions).

Do you take any drugs at all or just work out? I can't wait to work out again. But my doc put me on a maintenance drug after the surgery - pentasa (5-ASA). Were any recommended to you at all? I just had the surgery three wks ago.

 

[dizzyd]

Hi dizzyd - welcome! Glad you are feeling ok. I just had my first resection (and of course, hopeful last - nice to see these other posts of long remissions).

Do you take any drugs at all or just work out? I can't wait to work out again. But my doc put me on a maintenance drug after the surgery - pentasa (5-ASA). Were any recommended to you at all? I just had the surgery three wks ago.

No I am not on any drugs. The doctor highly recommended that I go on Immuran after surgery but I was not comfortable with that so I declined. He was ok with that. I still go once a year to see him. Yes I work out with weights 3x/week. I really enjoy it. I joined the gym as soon as I got the ok from the doc. I was so disgusted with the weight and muscle I lost I kinda went to the other extreme. I am trying to pack on some muscle and feel really good having extra strength. (especially after being sooooo weak. Hope you continue to do well after surgery and hope you get the ok to start working out soon.

 

[dizzyd]

After surgery I was in remission for 12 years - so yes, there's always hope

How did you know when it was back? Doc says I will know but sometimes I just get paranoid and a little extra gas or constipation I'm thinking oh oh.

 

[elp888]

How did i know...

Even though i've had some minor stomach pains and diarrhea in those 12 years (and the accompanying paranoid thoughts), they always went away again. This time however, they seemed to get worse. I then caught some kind of stomach bug and i was really really ill for 4 days (water coming out both ends, pardon me).
Went to the emergency and they didn't seem too bothered (it was going around at the time). After that it just went down hill, losing weight fast, pain, lots of BM... after 2 weeks i finally saw my doctor and they made a sonar scan (not sure what this is called in English, they use them to look at unborn babies too) and they saw that the intestine was inflamed pretty badly....
From that point i knew for sure.... and the whole thing started all over again. The bad thing is that after 12 years, you forget what it's like and you get all angry, sad and frustrated again.

In hindsight i should have gone to the doctor sooner, but I guess i was in denial... so, continue to have regular check ups might be a good idea (i hadn't seen mine in over 5 years). I'm up for surgery this May, after that i hope to be in remission again for a very long time - I hope the same for you!

good luck,
e.

ps.
I did continue taking Pentasa all those years

 

[Kev]

Hey, don't feel bad... about the denial thing. I thought I had the flu, just so bad I ended up in the hospital (ER) too. Docs there initially thought it was a bad flu also UNTIL the x-rays came back. Those showed extended (or is it distended) bowel. I then got an 'ultra sound' (also called a sonogram by some). That's when all of the fun really started.... So, if I can mistake it for flu, and docs can too, don't be too hard on your diagnosis. Think it's pretty common.

 

[elp888]

thanx!