Florida Crohn's - Possibly in denial

[mldmark1]

Hello all....I've been checking this site for months and appreciate the huge amount of information and stories I've read.

Here is my story.....

I'm 34, married with a 3 year old daughter.

In the summer of 2009, I drove from Florida to South Carolina and when I got out of the car I noticed a disturbing wet spot on the back of my pants and quickly made a stop at a local store. I thought I was just sweaty but not so much. That problem continued for weeks and then I started having severe pain after BM's, so bad that I would bite on a towel and lay on the floor for about 20 minutes after until pain went away. That was it....those were my symptoms.

I thought I had a fissure or hemmroids and made appt with a GI who said he couldn't diagnose without colonoscopy. I was in denial and put it off for 6 months until I was sick of the pain. Sure enough, Crohn's was diagnosed and he gave me Flagyl and Asacol. Pain went away and everything was normal. My GI treated me like an idiot when I asked questions so I fired him and got a second opinion. New doc took one look and said I had fistulas and scheduled appt with surgeon to get draining seton inserted. He also wanted me to get on Remicade ASAP.

Had surgery about 3 weeks ago and the Dr said it wasn't as bad as he thought and no seton was inserted....but he told me to remain on Flagyl which is the worst part for me.

Had first Remicade infusion 2 days ago without any issues at all. It only took 2.5 hours and I felt and still feel completely normal.....

My only issue is still occasional leaking but no pain at all. The Flagyl stinks but I have been on it so long I am almost used to the metal taste. Dr told me I can stop Flagyl after 2nd infusion of Remicade in 2 weeks.

I'm grateful that my case seems like a walk in the park compared to everyone else's stories I read. Honestly, I am still so confused as to why I don't have any of the normal symtoms and will I get them at some point? Or is this the worst of it......

THanks for reading......

 

[Jennjenn]

I just wanted to say Welcome

 

[archie]

Hello and glad you've joined the forum. I was just diagnosed with crohns in may of this year after having pain in my tummy, that was my only my only symptom then and I had a CT scan as it wouldn't go away which confirmed IBD. I too was in denial as at 36 years old couldn't believe that I had something wrong with me as otherwise I was very healthy. It unfortunately dveloped into an abscess which perforated and I became very ill very quickly, but after antibiotics in hospital was soon on the mend. I have been on prednisolone and pentasa for 5 months and have just had a iliocecal resection last week to remove 1 foot of diseased bowel, I am now off all medication and feel great. I too feel very lucky to not suffer all the symptoms that some people have and am glad i was diagnosed in later life. I'm hoping that the surgery has sorted me out and that you too get some relief of your symptoms soon without them developing any further. This forum has been of great value throughout as I have gained really great experience which has really helped me deal with things so hope it helps you to.

 

[ErikaHouston]

Welcome

Hi just wanted to say welcome. I've learned that while most people have simlar symptoms there are quite a few other presentations of the disease. For me, I have ZERO pain, I just have severe bleeding episodes requiring hospitalization and sometimes transfusions. This has now happened 3 times, but now that I am on meds hopefully they will heal the ulceration in small intestine causing the hemorrhages.

I do know that Crohn's can also sneak back up after years of remission, so it's something we'll have to be mindful of forever. It sucks, but could be much worse .

 

[Jessica]

Welcome to the forum! I'm sure as you read, CD affects everyone differently. However, we're here for you whenever you need!
<3

 

[CDDad]

ah yes, Denial - not just a river in Egypt. I lived way too many years in da nile. Sure, I had constant urgency and diarrhea, but no pain. Frustrated with docs, I just dealt with it for many years without meds - it was not "that bad". Now I wonder how much that contributed to my current state of affairs, with my 3 surgeries.

 

[crazycanuck]

Hi there sorry for your troubles but welcome to the forum. As for your question as others have said everyone is different and those may be your only symptoms forever. I know at the begining I never 'leaked' but now occasionly (before remicade) I had been getting that . Also if you have any questions at all you are now a member of thr remicade club over in the treatment section so feel free to stop by there.