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Crohn's Disease Forum » Your Story » Newbie from South Nebraska


05-06-2011, 09:08 AM   #1
itsMeFred
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Newbie from South Nebraska

I'm Erin, a 37 year old, stay at home mom of 2 and a cowboy's wife. We live on a little place in the extreme NW corner of Kansas. Though my husband works in Nebraska, my kids go to school in Nebraska, and we do all our shopping in Nebraska. And who wants to admit they're from Kansas??

I'm recently diagnosed with Crohn's of the terminal illium (and possibly colon, but he wants to scope before claiming that one, too).

In looking back, I've had symptoms off and on since my daughter was born, 9 years ago. Of course, I also had gall bladder disease at the same time, so I attributed a lot of it to that. And, I was never severe or constant.
I'd have this occasional twingy-ness in my side (which I attributed to the return of kidney stones) and various bathrooming issues, but it never lasted long enough, or happened often enough, that I was concerned. In hind sight, though, the pieces all fall together...

I've been trying, with varying degrees of effort, to follow a low-carb diet for about a year and a half. But this March, I cheated about every weekend. Candy. Breads. Pizza. Yum! However, after every cheat I'd have the stomach flu! D, nausea, and stabbing nails in my stomach...
My cheat days only lasted a day or two, though, and then I'd get myself back into low-carb and my stomach would settle back down.

The first time it was easy to ignore. People get the flu. The second time was a bit odd. Twice? In two weeks?
But by the third, I decided something is wrong. I'd better go to the doc and find out what's wrong with me.
No temp. No high white count. Hmmm... She sent home a stool kit.

By the time I was admitted to the ER (having been following the doc's recommended "gentle starch" diet for several days) with what I was sure was appendicitis, my stool culture was back.
I had a serious gut infection from two types of clostridium, and the CT showed, in addition to a less-than-ideal appendix, a highly inflamed ilium and colon. Still no temp or high white count.

My internist already diagnosed me from the CT and my history, but wants a scope to investigate damage.

On the bright side:
I've apparently had a pretty mild case for nearly ten years. And, once I did a little research and found references to the "Special Carb Diet" ("Paleo" in the low-carb/fitness world), I went back on my slightly adjusted low-carb diet as soon as I got off starchy hospital food.
I have soft stools, but not d, I'm nearly done with my antibiotic course, I'm down to 10mg of pred. a day and will be tapered to none by next week. I feel normal, except for this very mild ache in my side.

I was a parent-sponsor for my 11 year old's field trip to the Denver Zoo yesterday. A 14 hour day that included a 4 hour bus ride both coming and going.
And it was no big deal. The kids used the bathroom more than I.

So I guess my diagnosis is a blessing in disguise.
I now know that I can not "cheat" on my diet. (I am firmly convinced my diet is a big part of what has been keeping this thing relatively under control.) It's no longer something as minor as stalling my weight loss. This is now something that I hope will keep drug therapy away for as long as possible!

Last edited by itsMeFred; 05-06-2011 at 09:40 AM.
05-06-2011, 11:02 AM   #2
dreamintwilight
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Hi Erin!

Thanks for sharing your story with us.

It's funny when you look back, after being diagnosed, and you start to realize all the funny little things we ignored about our health before all somehow related to this underlying issue that we've had for a long time!

It sounds like you've got a good team of doctors supporting you and you've already found a diet that seems to work for you. That seems to be the toughest part for some people, so you're two steps ahead.

It's wonderful that you've been able to still go on with a normal sense of life. I hope it continues that way as you get your health under control. Have your doctors talked about possible long-term medications for you once you weak off the Pred completely?

It was nice meeting you! Hope to see you around the forum more often.
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Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
05-06-2011, 11:16 AM   #3
xJillx
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Hi Erin! It does sound like you have a very mild case of Crohn's, which is terrific news. And now that you have your diagnosis, you can begin a mild treatment plan (most likely an anti-inflammatory) and probably do fabulously! Also, it sounds like carbs trigger your symptoms, so if you can avoid these, it will help you to feel good, as well.

Good luck with your upcoming scope (definitely a good idea to have this done to see where your disease is located and any possible damage), and let us know how it goes!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
05-06-2011, 05:14 PM   #4
itsMeFred
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Thanks for the welcome girls.

So far as long-term drugs, no my doc hasn't said anything about it yet. I've obviously missed something...
Does everyone with Crohn's have to be on drugs? If I'm maintaining an anti-inflammatory diet, can't they just monitor inflammation levels (via C-rp's I suppose...?) instead of automatically throwing drugs at it whether needed or not?

Last edited by itsMeFred; 05-06-2011 at 05:40 PM.
05-06-2011, 05:54 PM   #5
dreamintwilight
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CRPs aren't really very reliable as you may come to find out the more stories you read of people here.

I think it is a personal choice whether you decide to be on a maintenance drug, but I believe it is a dangerous road if you choose to go without. It's not impossible (I do have a friend who is med free and in remission), but more often than not people tend to be in worse flares when they aren't on anything at all.
05-06-2011, 08:01 PM   #6
Jer's Girl
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I agree with Marisa, but everyones paths are different. If you are doing well, maybe it is best not to mess with it. Welcome to the forum!
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05-06-2011, 09:30 PM   #7
itsMeFred
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I'm doing well, but I'm still on prednisone, and I know I can't do THAT forever!
05-07-2011, 08:31 AM   #8
Astra
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Hi Erin
and welcome

No you can't stay on Pred forever, shame, but there you go!
My maintenance med is Pentasa.
18 months ago, I stopped taking it and thought, rather stupidly, that I was doing ok without, but I ended up in hospital and infected with obstruction.
Everyone is unique, so it is a matter of choice, but, if there is inflammation brewing, then diet alone will not halt it.
I only take 2x500mg of it now just to maintain.
Just see how you get on once the Pred is finished, it might be masking something.
Good luck tapering, and enjoy the forum
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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05-07-2011, 09:53 AM   #9
ameslouise
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Hi Erin and welcome! Glad you are doing well and have things under control. Good luck coming off the pred! (Though going from 10mg to nothing next week sounds like a big jump - how long have you been on and what is your taper?)

Have you been tested for food allergies or celiac?

Hope you continue to feel well! - Amy
05-07-2011, 04:28 PM   #10
itsMeFred
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I've only been on it since my hospitalization/diagnosis 3 weeks ago. And they started tapering me within a few days... I'd been steady at 20 mg for about a week and a half. Saw the GI on Tuesday and he started my current taper then down to 10 (where I've been til today). Tomorrow I'm down to 5 for a few days and then off.
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