How long til it comes back?

[miraclebabysmama]

how long til it comes back?

I was diagnosed in July of 2005 with a severe case of Crohn's. I had been having symptoms for months, but doctors kept telling me it was stress (I was getting married in August). I did 5 months of various medications, but nothing made it better. There was a lot of scar tissue form the inflamation which caused a stricture. I had an iliocolectomy December 9, 2005 and continued meds until October 2006 when my husband and I decided we wanted a baby. I have been off all meds since then and have had NO Crohn's related symptoms. I have had 3 children in that timeframe also and none of my pregnancies caused a return of symptoms. I feel like I am living on borrowed time. I was told that 5 years was the max remission my GI doc had ever seen, and she didn't expect me to make it through my first pregnancy without a flare. I am coming up on 6 years since my surgery. When is it gonna come back? The longer I go, the more i feel like it was some sort of misdiagnosis? Could they have been wrong?

 

[kiny]

No one knows I guess. I have had the same as you, I had an inflammation, got really sick. 5 years without crohn's, it came back beginning this year, now I'm back without any symptoms for about 6 months and off meds completely. All of this points to a bacterial infection that manages to multiply slowly.

 

[miraclebabysmama]

I haven't even seen my GI doc since about 6 weeks after i delivered my first son (born September 2007). She insisted I go back on meds, despite not having any symptoms, and stopping breastfeeding. I told her no, that I planned on breastfeeding til at least 1yr old, so she said, "well come back when you are ready to take this seriously." I got pregnant when he was 8 months old, had a daughter in February 2009, got pregnant when she was 10 months old and had another son in September 2010. So since December 2006 I have been either pregnant, or breastfeeding, or both. It's not that I am not taking it seriously, I just don't see a need for meds when there are no symptoms and I WILL NOT put my babies in danger from unnecessary (for them) meds. My first daughter (born Jan 2003, prior to Crohn's diagnosis) was born with a congenital heart defect, Transposition of the Great Arteries, so because of that I will take no chances when I'm pregnant.

Sorry for the ramble, I guess I'm just waiting for the other shoe to drop. It's not like Crohn's can be gone forever, right?

 

[Del]

Thats great news. Simple answer is everybody is just to different with this disease.
Long may your remission last...
It is an incurable disease because they don't know enough about it...but don't try to fit into any stereotype image of this disease.. you could spend the rest of your life in remission...I hope.
Stay positive and expect the best..

 

[kiny]

It's not like Crohn's can be gone forever, right?

It can in theory, but that's just not what they see in most people. If crohn's is MAP or E Coli, in theory your own body could be able to fight it off, this is what happens in people who don't have crohn's. So in theory, it's possible.

What's more likely is that during remission we manage to fight off a good percentage of the bacteria and during a flare up they come back, but because they multiply incredibly slow, we can stay in remission for years.

 

[miraclebabysmama]

It can in theory, but that's just not what they see in most people. If crohn's is MAP or E Coli, in theory your own body could be able to fight it off, this is what happens in people who don't have crohn's. So in theory, it's possible.

What's more likely is that during remission we manage to fight off a good percentage of the bacteria and during a flare up they come back, but because they multiply incredibly slow, we can stay in remission for years.

I never really researched Crohn's much when I was first diagnosed, so I'm a little confused. Are you saying that bacteria causes the flares?

 

[kiny]

I never really researched Crohn's much when I was first diagnosed, so I'm a little confused. Are you saying that bacteria causes the flares?

Yes, the flares are the side effects. The body gets infected, our innate immune system (not the same as our adaptive immune system), is not able to fight off the bacteria, and the second phase is the overreaction of our body which cause the inflammation which results the the things we call flares.

The medication suppresses the immune system, but never dealt with the bacteria, so it just keeps coming back.

We are likely immune deficient, suppressing the immune system might actually make it worse in the long run, but because it stops inflammation we see the pain subside, but the main issue, the bacteria, would still be running around causing havoc.

 

[Gwen pippy]

Long may your good times roll.
Don't sit worrying about what might be, enjoy everyday and those lovely children. Anything is possible, even a lifetime of remission and as my hubby always says if I get into trouble with a flare we'll just go get it sorted.

Big hugs
Gwen xx

 

[miraclebabysmama]

I was told recently by a friend who is a massage therapist that people with immune disorders shouldn't get deep tissue massages. Is this true? The way she explained it was that knots in your muscles are like a build up of toxins. having massages breaks up those toxins. that requires your immune system to find them all and get rid of them. But, in people with immune disorders, your body may not "shut off" right once the toxins are gone, causing your body to start attacking itself? did that make sense?

 

[kiny]

I was told recently by a friend who is a massage therapist that people with immune disorders shouldn't get deep tissue massages. Is this true? The way she explained it was that knots in your muscles are like a build up of toxins. having massages breaks up those toxins. that requires your immune system to find them all and get rid of them. But, in people with immune disorders, your body may not "shut off" right once the toxins are gone, causing your body to start attacking itself? did that make sense?

Not sure what I feel about massages, I have done them but didn't feel much better. I think there are benefits and negatives but I don't know what the end result would be.

When the healing process starts, scar tissue starts forming, during this period there might be strictures because unlike normal mucosa, scar tissue is not flexible at all, so your get strictures, which I have a tiny bit atm, but they start to go away day by day.

Another thing that happens is the massive buildup of mast cells, and I have no idea what the effects of massages would be on constantly moving your abdomen around, but it likely isn't positive.

(so I basically changed my mind, I thought massages might be good, but if you're in a healing process after a flare, I think they do more harm than good)

 

[miraclebabysmama]

Not sure what I feel about massages, I have done them but didn't feel much better. I think there are benefits and negatives but I don't know what the end result would be.

When the healing process starts, scar tissue starts forming, during this period there might be strictures because unlike normal mucosa, scar tissue is not flexible at all, so your get strictures, which I have a tiny bit atm, but they start to go away day by day.

Another thing that happens is the massive buildup of mast cells, and I have no idea what the effects of massages would be on constantly moving your abdomen around, but it likely isn't positive.

(so I basically changed my mind, I thought massages might be good, but if you're in a healing process after a flare, I think they do more harm than good)

in reference to the bolded part...I am the same way. Actually, I usually feel worse for at least 2 days afterwards, sometimes barely being able to move and having to take pain medication because I hurt so bad.

spin off to that...is it true that people with Crohn's shouldn't take Advil (Ibuprofen) or Aleve (Naproxen Sodium)? Only Tylenol?

 

[kiny]

in reference to the bolded part...I am the same way. Actually, I usually feel worse for at least 2 days afterwards, sometimes barely being able to move and having to take pain medication because I hurt so bad.

Same, it gets worse for a few days and then better again.

spin off to that...is it true that people with Crohn's shouldn't take Advil (Ibuprofen) or Aleve (Naproxen Sodium)? Only Tylenol?

Yeah it's true, you should avoid all NSAID if you have crohn's.

 

[miraclebabysmama]

Yeah it's true, you should avoid all NSAID if you have crohn's.

dang. I'm allergic to Tylenol. So anything that I could use? I usually just take Advil even though I had been told I shouldn't.

 

[kiny]

Paracetamol is fine. I live in Europe, I don't know the US brands btw, but they should have it in some brand.

You should tell your doctor though before you take any.

 

[miraclebabysmama]

Paracetamol is fine. I live in Europe, I don't know the US brands btw, but they should have it in some brand.

You should tell your doctor though before you take any.

http://en.wikipedia.org/wiki/Paracetamol shoot. looks like it's the same thing just a different name.