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Crohn's Disease Forum » Your Story » Returning Crohnie

06-27-2013, 05:01 PM   #1
cara-lou's Avatar
Join Date: Jul 2010
Returning Crohnie

Hi guys,

I haven't been on here in a LONG time but I felt like I really needed to get back in to it. My name is Cara and I've been diagnosed with Crohn's Disease for 6 years (I reckon I've been having symptoms for 10 though). Now that's quite scary when you say it out loud.

My story has changed quite dramatically in the last few months. If you had asked 3 months ago how I thought my Crohn's was doing I would've said "oh you know I have the odd flare up but I can generally pin point what has caused it and avoid that for a while" I was also on no medication. I genuinely felt well, the best I had felt in the years of having this thing.

Then I went to the doctors with what I thought was a severe case of heartburn. I had a really bad pain just where my diaphragm is and it hurt when I breathed in deeply. It turned out my time of "feeling well" had done some serious damage which ended up in a twisted and perforated small intestine, emergency surgery and me minus 36cm (around 14 inches) of my small intestine.

3 months on and I'm fully recovered and sporting a very impressive scar. My new consultant is completely baffled as to how I managed to get in such a state and not notice. I would love to say that I have a high pain threshold but I literally cry if I fall over and scrape my knee.

So here I am, and I feel like I'm starting all over again. Which I am in a sense as they removed all of the diseased tissue so I've got a clean slate (almost). I'm a bit scared, very confused but generally try to look on the bright side and laugh as much as often as possible.

This thing continues to baffle me.

Over and out.
06-27-2013, 09:04 PM   #2
Ginger is her name
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Ginger is her name's Avatar
Join Date: Jun 2013
Location: Reading, Pennsylvania

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Good luck! I'm very new... Just diagnosed in Feb. I know what you mean though... I had a blockage and needed surgery. My doctors were amazed that I didn't have pain, but I too would cry if I scraped my knee! I feel fabulous! I didn't realize how sick I was for as long as I was! I ended up with a stoma, Ginger, but she will be reversed!

I love your positive attitude! I hope you continue to feel well!
06-27-2013, 09:24 PM   #3
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Join Date: Jul 2012
Location: Barrington, New Jersey

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Hi Cara,
Sorry that you had quite a scare and needed surgery. Now the important thing is for you to follow up with a gastro doctor and go on a maintenance medication. The big problem with Crohn's is that without medicine, it tends to come back.
Vitamin D and B 12
06-28-2013, 12:50 AM   #4
cara-lou's Avatar
Join Date: Jul 2010
Hi Ginger is her name, thanks for replying.

I'm sorry to hear about your diagnosis in February and that you had to have surgery so suddenly but it seems like you have a pretty positive attitude as well! I hope you and ginger are doing well and that ginger gets reversed soon : )

I suppose we've got to look on the bright side, at least we don't get half the crappy (no pun intended) symptoms that some people with Crohn's disease have to go through and for that I feel very lucky, and I'm going to keep it going for as long as possible.

KH216 thanks for your advice too. I think that was my biggest problem, not having a good gastro. I was passed from pillar to post with consultants in my home town then I went off to university and had the same kind of experience.

I do have myself to blame as well though. Since leaving university and relocating for work I honestly pushed my Crohn's disease to the back of my mind, I genuinely felt well and didn't think I needed to make contact with a gastro here. Well I had a big wake up call and I've now got a 4 inch scar to remind me of that.

My new gastro doctor is lovely (plus he's pretty hot too!) and has discussed maintenance therapies with me. He also gave me a bit of time to go away and think about it rather than just tell me I was having them and force them down my throat, which was refreshing! I'm currently finishing a 3 month course of post surgery antibiotics and then I'm due to go on azathioprine. I was a bit scared at first of the side effects, and just wanted him to monitor me for now and see if I needed to take the drugs later. I'm still pretty confused about what I'm going to do but I know that there's a treatments board on here for this kind of thing so I'm going to check it out.

I've got an appointment in a couple of weeks where I'll make the decision. I'll let you know how I get on : )
06-28-2013, 06:06 AM   #5
Forum Monitor
Join Date: Jul 2012
Location: Barrington, New Jersey

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I was an Aza before and had no problems. Some people complain of nausea when taking it. The best thing is to either take it with food or split the dosage and take half in the morning and half in the evening. It is VERY important that you follow your doctor's advice and get regular blood work. Your doctor will need to monitor your liver enzymes and your blood count. If there are problems with them, he will either lessen the dosage or change the medication altogether.

Also, and this is very important, it generally takes about 3 to 6 months for azathioprine to work. If you have symptoms during that time, your GI will temporarily put you on an additional medicine until the
Aza works.

Please check out the
Azathioprine subforum when you get a chance.

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