Crohn's Disease Forum » Your Story » Michael's Moment! New Girl

01-31-2017, 12:31 PM   #1
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Michael's Moment! New Girl

Hi everyone - I am 47 years old and have had Crohns symptoms for about the last five years - although never formally diagnosed. I alternate between periods of extreme constipation and longer periods of intense, very little warning diarrhea. About three years I had my first "Michaelsmoment" in the craft store Michaels. While walking around with my daughter I felt some slight cramping that quickly became painful enough for me to have to stop walking and grip the cart until the wave passed. I headed back toward the bathrooms in the rear of the store (no pun intended) and it became very evident I was not going to make it. so started the horrible journey of 1000 steps with uncontrolled bursts of poop and I made it to the stall - more mortified than I have ever been in my life. Thank goodness my daughter was with me and could go next door to Walmart to purchase me a new pair of pants - because mine were not salvageable. Add to that having to clean my own rear, back, thighs and legs with paper thin toilet paper - getting poop everywhere and having people come in and out of the bathroom gagging and saying some very unkind things. I went to the doctor after that episode and was told to keep my meals small and frequent - no high fat foods - limit processed foods. I am also a type II diabetic so that wasn't a stretch for me. Fast forwarding through the last few years, no more 'Michaels moments' however several incidents of not being able to make it to the bathroom at home - whether in bed sleeping and waking up with a start - or just puttering around the house. (no pun intended). However this last weekend I had a "michaels moment" from hell at the Imax theatre at the Grand Canyon. We had stayed at a hotel in Grand Canyon Village and between checking out and my incident we had stopped at a Wendy's, a Circle K, and a liquor store for me to run in and use the bathroom. each time was close - but I made it. However almost to the park - we had to pull into the Imax Theatre and sure enough, I didn't make it to the bathroom - had not grabbed my phone - and the place was completely full of tourists. Once in the stall - I had a horrible mess that was worse than the first time - no way to call my daughter in the car - and I was helpless, in my shirt only - standing in the stall. I was so mortified and tried asking through the stall door for help, a phone, paper towels, anything. No one helped for almost twenty minutes. Finally I stuck my head out and saw a worker cleaning the sinks and said "please help me" and she came over - all the while exclaiming in spanish and saying "oh my god" Finally got her to see what had happened and she went out to the parking lot to search for my daughter. Never a kind look or word - only disgust and anger at me. There really has to be a way to educate the public more than it is now - I know there are 'gotta go' cards, but not everywhere - and people look at you like you are subhuman and shouldn't be out in public. Horrifying and humbling. So here I am - I looked up statistics and found out how many millions of people suffer from IBD related problems and I couldn't believe it!!
01-31-2017, 01:22 PM   #2
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Scipio's Avatar
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Wow, you have my sympathy.

As for your condition I think it is important to get formally diagnosed so that you can get started on some therapy to reduce or eliminate your "Michael's moments."

To begin with it might not be Crohn's at all. The alternating between constipation and diarrhea is the hallmark of one type of IBS, the so-called IBS-A. (The A is for "alternating.") IBS and IBD are treated very differently, so it's important for you to get a correct diagnosis. What other symptoms do you have that leads you to think you have Crohn's? If you do have Crohn's it is important for you to get on appropriate therapy to knock down the inflammation, otherwise it will continue to get worse, possibly a LOT worse.

Are you currently under the care of a GI?
01-31-2017, 01:44 PM   #3
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Sophabulous's Avatar
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I agree with Scipio, it doesn't sound like you are having much fun at all

Have you ever had a colonoscopy to look for a reason for this or to rule things out?

Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
01-31-2017, 01:57 PM   #4
Michaelsmoment's Avatar
Join Date: Jan 2017
Location: Phoenix, Arizona
lots of fatigue, missed periods, (although that could be pre menopausal) Painful gas all the time -I have had an endoscopy which diagnosed several ulcers and a large hiatal hernia and acid reflux -put on medication for reflux and ulcers - Colonoscopy showed some inflammation but nothing else.

I have an appointment with a GI - took forever with my insurance...

Last edited by Michaelsmoment; 01-31-2017 at 02:18 PM. Reason: adding to post
01-31-2017, 02:52 PM   #5
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I also agree with Scipio. I hope the doctor can get you on the right medication to get things under control. I am sorry for what you have been through. I have had similar happen to me.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-08-2017, 08:03 AM   #6
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02-12-2017, 05:07 PM   #7
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Join Date: Feb 2017
I had to chuckle, and empathize, with you on this. Oh, the places I have poo-ed! We call them OOLE's - Out Of Lavatory Experience.

I share you outrage that you were left helpless in a cubicle - how can that happen? I would have given you the clothes off my back.

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