Crohn's Newbie

Hello,

My name is Heather, 25, teacher. I was just diagnosed with Crohn's 2 weeks ago tomorrow. My mom has had the disease for the last 6 years. This is my journey to diagnosis. Almost 3 years I developed an abscess. It was drained by a general surgeon and I was sent on my way. Every 3 or 4 months the abscess would recur but never as bad (or painful) as the first time.

Cut to this past fall when I started not to feel well. I started getting occasional stomach aches and diarrhea. Still didn't really think that much of it until the aches and diarrhea became more and more frequent. The abscess also started to act up more and more. Finally in January I was referred to a colorectal surgeon to discovered that I had developed a fistula. And exam and surgery were scheduled. The doctor was uncertain it was Crohn's even given the family history and symptoms.

I ended up with emergency surgery after stomach aches and diarrhea landed me in the hospital. They place ceton drains. I spend a little over 24 hours there and was sent home with a scheduled colonoscopy for the following week. My symptoms increased and were becoming worse and worse. Finally I was rushed to the hospital in the middle of the night after I began vomiting.

At first I was diagnosed with C-diff. An infection the doctors thought I developed after the surgery. It wasn't until I had the colonoscopy the next day that I was diagnosed. That was Feb 8th, 2011. I ended up spending a total of 6 days in the hospital.

So here I am. Totally overwhelmed. I am currently on prednisone (ugh!). The plan of treatment is Remicade and 6MP.

I am hoping that there are some people who are on this treatment plan here. Maybe someone with a fistula.

Even though I have a great experienced support system in my mother I would love to hear from others too.

Thank you for reading
Heather

Hi Heather
and welcome

Yes, there are lots of us with the very same issues as you, and many will answer you soon.
Check out our Remicade Club thread, lots of success stories there.
Hope you find comfort here with us, we are a Huge support system, cos we understand!
Lotsa luv
Joan xxx

Hi Heather, i'm glad you found your way here as it's certainly understandable that you're feeling overwhelmed right now. I'm sure there are quite a few who are on the same or like treatment plans. You may want to check in on our Remicade forum and see what's going on in there.

Wishing you well and sending you lots of *hugs*.

Hi Heather! I'm a teacher with CD also. You will like this forum as there are so many supportive people who have lots to share, and are very understanding. Welcome!

Drains aren't those a joy..i went from drains to resection no fistula yet but there's always hope right I was prescribed 6mp first and i being stubborn took myself off that because the side effects seemed worse then my crohns. I have heard that 6mp is kinda old school hard core treatment so maybe you can get them to change it after a short time and get on something less intense...i will give it credit though it did (for me) shut down the flares..but once you have control it just seemed to beat me down..hense why i stopped for other treatment...I just started Humira..to be honest i think all the meds are hit and miss. But on the bright side at least you got the diagnoses done and now you can focus on finding your treatment. Best of luck and keep your head up! I know its hard..I cried once because all i wanted was to be able to eat a milk shake...and at 28 yrs old...well that was just kinda sad LOL We all have a low point you just have to be able to hit it and get back on your feet. I personally think we people with crohns are stronger then the rest of the world...we deal with trials daily that most only hit once in a life time...so be proud..your already part of the A-team! LOL

Hi Heather!

Welcome to the forum

I was diagnosed last year with Crohn's disease at 25 as well. They discovered it after I was hospitalized for an abscess that they drained. I had fistulas too.

I've been on Humira (similar to Remicade) and azathioprine (similar to 6MP) for almost a full year now and my fistula is gone and no signs of abscesses either. They just downgraded me from moderate-severe to mild Crohn's!

Hope you find this forum helpful and supportive. It really helped me deal with this when I was first diagnosed.

Hi Heather - My circumstances are very similar to yours, as many others are too. Abscess and fistuals when I was diagnoes and was immediately put on Remicade and it really helped! Cleared up the fistulas almost immediately and I was in remission with hardly any symptoms for over a year. Eventually it did stop working for me, but it really is a miracle drug. Sounds like you are the perfect candidate. Hope you get well soon. Lots of support for you here!

BEth

Hi Heather! Welcome to the forum.

I haven't been on Remicade and 6PM simultaneously, but I did the former followed by the latter and had success with both. Only side effects were from the 6MP; fatigue and some mild nausea. The fatigue went away after a few weeks once my body adjusted to the drug. The nausea always went away if I ate something, and I don't get it anymore now (again it only lasted a few weeks, during the adjustment period). I also take mine in the morning, but I've since heard taking it at night just before bed can help you to avoid the nausea all together. Wishing you lots of luck with the course of treatment if it goes ahead

Hi welcome

I was on the combo of Remicade and 6mp at one point. I did not have fistulas but there are many people who are treated with this combo who have great success with it. Good luck with everything and I hope you feel well soon.

Welcome Heather!

My sister is also a 25 year old teacher, but she doesn’t have Crohns. She always says that it would be really hard to be a teacher with Crohns because you don’t get many bathroom breaks!

As for the Remicade, I love it! It is the best thing, medication wise, that I have ever tried.

Hope it works for you!

Jer, you are right. I've been teaching for 13 years. The only that has saved me, is having a restroom in my classroom. When I have to go, I tell the students that they have a ten minute talking break. I quickly go and the room is usually flooded with talking that they never hear me.

Hi Heather and welcome!

The diagnosis can be startling for the first few weeks... or months! It took me forever to come to grips with it! I hope the medicinal cocktail works to help you feel better and relieve the abcesses and fistula. There's lots of info on here about all that so have a poke around and you'll learn a lot!

- Amy