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Crohn's Disease Forum » Your Story » Never Thought I Would Do This: But here's a snapshot of my mild story...any similar stories??


04-10-2014, 12:20 AM   #1
Sea_Star
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Never Thought I Would Do This: But here's a snapshot of my mild story...any similar stories??

Although I am still "in denial" or think "certain;y" this has go to be something else, something has led me to joining this forum. Maybe it's time I see if anyone has a similar experience. Hello, I'm Alex (my username was supposed to be Seastar but it got separated to "Seas tar" when I created the account on my phone lol) so I apologize if it sounds like i work on an oil rig It's comforting talking to other people online (oh God what a recluse i am!! haha) Ok no seriously:


Recap: transfered colleges in Fall 2009. The dining hall food at college caused practically the whole school to have frequent diarrhea, which we called it Laxwell (seriously). I was having rectal bleeding with that(only that food gave me diarrhea, just like everyone else), from Sept. 2009 to about April 2010, when I had a stomach ache for which I went to the ER. CT Scan showed thickening, sed rate was like 95(or 125 i think? cant remember) among a couple other high ones, even though the IGb(?) was negative ; colonoscopy showed a lot of inflammation in the terminal ileum, biopsy showed inflammation.They didn't do a small bowel series or fecal occult/stool sample though! :/ Discharged about 4 days later with ileitis and the primary attending (not the GI) said she doesn't think it's Crohn's. But the ER physician suspected it (off of a CT scan...?? and hemorrhoids??sorry tmi!) (Ok, but couldn't it have been a virus? bacteria? Since I don't have the typical symptoms...) Come to my hometown where I see a different GI in June 2010 who automatically said ileitis is Crohn's and started me on entocort, without any additional tests. Back at college, I had another GI. I stopped eating at the dining hall, MRI in 2011 showed inflammation and they wanted to start me on Humira. Ok, definitely I said NO. So I went to Mayo Clinic Rochester for a second/third opinion in 2011. Colonoscopy there was clear; MRI not much inflammation and no reason for Humira he said; found/treated C Diff. He asked for the biopsy slides from to which he reviewed them and said it could be characteristic of Crohn's, but pt could re-evaluate diagnosis. Come to Mayo Clinic in Jax in 2012, same-ish story in terms of "well, if you don't take meds it could get worse"...got a new GI in Miami who's worked with Mayo, and wasn't really taking meds since I felt ok, despite her telling me to... :/ The risk of Lymphoma terrified me, and the meds made me feel worse when I was relatively ok to start with.
March 2013: MRI ent showed thickening, and stricturing(she said probably due to old inflammation). I've been off meds since and have felt like that was all a fluke over the last 3 years, feeling 100% fine...it's like I had amnesia of it all! Eating whatever i wanted with the occasional stomach upset. Graduated college and moved back home last May 2013. But this January I figured I'd make an appointment with the GI in Jax "just to make sure" all is ok, since I stopped meds last year or so. To be honest, I had been having very mild soreness when exercising, in the right lower abdomen, but I attribute that to old inflammation/scarring.
I wanted to jumpstart healthy eating and my metabolism, clearing it out, so April 1-tried Herbal D-tox once (returned it due to feeling dizzy); April 3rd-tried cayenne pepper with lemon water(felt ok!); April 4: after eating broccoli and chicken, i decided to have a bowl of warmed up canned red kidney beans and cayenne pepper: 10 minutes later....pure liquid in the bathroom like 3 times! Since then, I have had somewhat constipation (tiny bm) and some upper cramping. Taken Miralax for the last few days which feels like it stops paristalsis. Basically? I feel like I gave my system an earthquake April 4th. Seeing Dr. on May 1st. This is the first time in over a year I see one...it's difficult for me, not seeing how this affects me. I literally feel ok other than the cramping i guess...

But basically, that's it in a nutshell. Aside from entering a science laboratory myself with taking my own biopsy and assessing it, it's a minefield for me in trying to figure which doctor to choose back home...even though Jax is like 3 hours away, i saw him 2 years ago and it's tied to Rochester so....i just feel like he's going to yell at me!! :/ WHAT IF. I'm a big what iffer lol. And possibly ADD with medical doctors lol

Thank you to whoever reads this. Maybe there's a similar, mild case out there?

Like, usually aren't people diagnosed based off of symptoms of diarrhea? A bunch of things could cause stomach aches...
04-10-2014, 04:16 AM   #2
valleysangel92
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Hello there,

Im sorry you've been struggling with this, I didn't really get D either, infact the first time was after my surgery to remove part of my intestines. For a long time, I had more mild symptoms, stomach aches and the likes, and my doctors weren't concerned. In 2012, things took a turn, and I got pretty sick really quickly, loosing loads of weight, crippling pain, not able to keep food down etc, still no D though. It was at this point that I finally got diagnosed and started treatment, by which time, medication wasn't enough.

I'm not trying to scare you, just want to show you that mild doesn't mean its not serious, you still need to take care of yourself and keep your disease controlled. Crohns is a sneaky illness, and the symptoms we feel don't always reflect the severity of the damage. Get back to your doctor, and see what they suggest, I understand not wanting to take the big guns like humira if you don't feel sick enough, but there are other, less scary medications available which can help keep your condition stable.

As for food, unfortunately, many crohns patients find that what is 'healthy' for everybody else, is far from it for them. You might want to try keeping a diary of what you eat and the symptoms you experience, to see if there is any link, keep in mind though that some people will find that eating pretty much anything is causing a problem.

As for worrying about the 'what ifs' with your doctor, this is perfectly normal, but a good doctor will not judge you, they'll understand where you are coming from. Its natural to want to deny that there is anything much wrong, and to be honest, most people here have done it at some point or another. The important thing is that you seem to be realizing now that it is important to get this sorted, so you should be proud of yourself for that.

Please try not to worry too much, you can do this, and we are all here for you!
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-10-2014, 07:11 AM   #3
lbligh
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A lot of people with Crohn's don't have the "typical" symptoms. With my teenaged daughter, her only symptoms were fever, stomach ache, and weight loss. She has never had diarrhea or bleeding or vomiting. The blood work showed a lot of inflammation, though. We were quite skeptical about the tentative Crohn's diagnosis until the colonoscopy made it definite.

The Specific Carbohydrate Diet has brought a complete turnaround in her symptoms and labs. We have been cautioned to expect occasional flares, though. As Valleysangel said (above), "mild doesn't mean it's not serious." I really should have that printed on a mug for my daughter.

I know you're trying to persuade yourself that you don't have Crohn's, but you can't go by your lack of classic symptoms, and who knows what damage is sneaking up on you?
04-15-2014, 04:56 PM   #4
David
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Hi there and welcome to the community.

If it is Crohn's and you do indeed have strictures, the bad news is it's not a mild case Of course, I don't think there's such a thing as, "Mild" Crohn's, but that's just me.

Would you like me to adjust your username for you?

All my best to you.
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