My Story-2nd Flair with 17 year remission

[Pharmacist]

Hello everyone. I've been reading these boards and it seems like everyone's IBD acts a little differently. I wanted to share my story in hopes that I may meet others who have had similar experiences.

I was diagnosed with CD when I was 17. I spent several weeks very sick with a fever, fatigue, stomach pain, smelly gas, canker sores, and arthritis. I eventually had a colonoscpy and was diagnosed with CD. I was started on pentasa 1g TID and prednisone 40mg daily. The prednisone was amazing and I went into remission fairly quickly. I tapered off prednisone after about 6 months and stayed on Pentasa for another 2 years.

I did not have a flair for the next 17 years! I was starting to think I no longer had CD or that it was a misdiagnosis. That is until recently. Back up to my last pregnancy, I had bright red blood with my bowel movements. I was told, it was just hemorrhoids, which are common in pregnancy. I was prescribed docusate and miralax, despite the fact that I was NOT constipated. I tried them along with fiber and the bleeding continued.

The bleeding never stopped even after after I had the baby. She is now 8 months old. A few months ago, in addition to the bleeding, I developed diarrhea-up to 10x/day with urgency where I sometimes couldn't make it to the bathroom. But, there were essentially no other symptoms except fatigue. I had labs done (high CRP and sed rate, low iron) and a sigmoidoscopy a couple weeks ago, which confirmed this is a flair. I was prescribed Rafassal (mesalamine) 2g BID, which seems to be helping, but I think I will soon be starting an enema or suppository as well.

So, anyway, that's pretty much my story. A 17 year remission and then when my IBD reoccurred, there were COMPLETELY different symptoms. Just wondering if anyone else has experienced anything similar. I've been so fortunate up to this point, and hope for another long remission, but I really have no idea what to expect.

 

[duh panda]

Hey

What makes Crohn's so difficult is that the symptoms have a wider range of possibility then Colitis so it has a less classic/ standard appearance. I've also noticed a change in how the disease acts/ difference in flares in the last decade since I was diagnosed.

When I was first diagnosed at 15/16 it was as UC because the symptoms adhered to the standard: diarrhea, blood, left abdominal pain, malnutrition, dehydration. There were extra intestinal symptoms of childhood IBD as early as 12 year old, but went undiagnosed until the classic signs of IBD showed and I was acutely ill.

I have never been in remission but have had high and low periods of disease activity. Each high period seems to manifest itself a bit... differently, although I do notice some similarities.

As years have gone on and complications have developed I've learned not to rely on what I considered my symptoms for IBD as I've had active disease without any bleeding or diarrhea due to location being further up the GI tract and ulcers presenting in the upper rather then lower GI.

What has stayed constant are my low energy levels when disease is present. Exhaustion. Fatigue. Poor appetite/ no appetite. And extra-intestinal inflammation in my joints/ skin acts as precursor for spike in GI activity. If I wait until I see the "classic" symptoms I'm often far worse off then I believed myself to be. Crohn's is so much more then the ever popular static image of it.

 

[ronroush7]

I am sorry you have Crohn's. It seems like each time has been a little different for me. There is no standard way that the disease acts. I was in remission from 1997-2005. I thought I was in remission last year but that ended up being false.

 

[David]

Welcome to the forum. In my opinion, you need, at minimum, a colonoscopy to see just where the inflammation goes to and to properly evaluate the severity as, in my opinion, the mesalamine formulation may not be sufficient based upon your symptoms.

I wish you well.

 

[lenny]

My daughter has been in remission for 10 years without drugs and I fear what pregnancy could do to her.

 

[Pharmacist]

David, I agree a colonoscopy would provide much better information over a sigmoidoscopy, but they didn't want to do it because I am pregnant. Lenny, they say sometimes pregnancy makes it better. I had 2 previous pregnancies without any symptoms.

I'm actually doing A LOT better on the oral mesalamine. No bleeding or diarrhea over the last week!

 

[David]

Oh, I thought you already had the baby. I misunderstood, sorry. AFTER you have the baby it'd be a good idea then

 

[Lady Organic]

Hi Pharmacist, it is indeed possible for the disease to relocate into different parts of the GI track over the years, this can come with different symptoms. This already happened to me. good luck!

 

[ronroush7]

Hi Pharmacist, it is indeed possible for the disease to relocate into different parts of the GI track over the years, this can come with different symptoms. This already happened to me. good luck!

Mine started in the small bowel. It is also now in the colon.