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Crohn's Disease Forum » Your Story » Hi Everyone & I need some advice


08-11-2015, 09:24 PM   #1
Intel Dan G
 
Join Date: Aug 2015
Location: Bethlehem, Pennsylvania
Hi Everyone & I need some advice

Hi Everyone and thanks. I've learned much reading here over the years.

The advice I need is this...
Since my 1st Gastroenterologist appointment is three weeks away, I need to know what to eat to survive until then!

Any advice along the lines of what you eat when having a flare up, and especially when you fear a blockage, would be most welcome.

Currently I am trying... Ensure in the morning, one Banana with a little peanut butter for lunch, and two soft boiled eggs with toast for dinner.
My Story...

I have not been diagnosed and (to my knowledge) do not have Crohn's (although at high risk).

In 2007 I had an intestinal blockage and was hospitalized for 6 weeks. It took two surgeries to correct the second being 12 hours long. The surgeon removed my Ileocecal valve as he stated it was quite gnarly.

Since that time I have chronic symptoms of SIBO which makes sense since there is nothing separating my small and large intestines. So typical BM is extremely foul smelling, explosive, with obvious film of fat floating on surface.
And of course I loose weight slowly over time no matter what I eat.

There are also episodes (weeks or a couple months) of obviously more digestion marked by weight gain and the occasional normal BM.

But until recently I have not experienced persistent 24/7 bloating.

The bloating started in late June. I started Prilosec and took Enzemedica Digest Gold + Probiotics with every meal. And ate rice with every meal. In the past this is what I did to manage through episodes of horrible gas production (but without the bloating).

This time it's not working and I am growing more and more fearful (anxiety ridden) of a blockage. It's starting to demand all my courage (and some Ativan) to put food into my stomach.

It's a bit hard to know what to say to you all that do suffer from Crohn's and have for so long. I guess the only thing I can say is that I truly and sincerely admire your courage!!!

Dan.
(52 years old)

P.S. As scared as I am to put food into my stomach I realize I am more scared not to!! What made me finally seek a Gastroenterologist? I couple days ago I noticed I was not even digesting all the rice.

Last edited by Intel Dan G; 08-11-2015 at 10:13 PM.
08-12-2015, 09:24 AM   #2
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
In a bad flare or if I suspected a partial obstruction, I would move to an all liquid diet, and drink only complete nutrition drinks like Ensure.

I can certainly relate to the difficulty of living with extreme bloating and gas production as I've struggled with SIBO since after my first surgery. Cyclical antibiotics and probiotics have been an imperfect treatment for me but have helped me avoid (or I should probably say minimize) the worst of the symptoms. I'm looking for something better for managing SIBO though!

It definitely sounds like the right course of action to see a gastro doc again. Hopefully they'll do some imaging to determine whether your symptoms are from a partial obstruction and you can get a more effective treatment plan in place for the SIBO, as well as some answers about all your GI issues.

Good luck!
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
08-12-2015, 07:05 PM   #3
teeny5
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Join Date: Jul 2008
Location: California

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Sending you support. I drank Ensure 2 times a day with something mild for dinner (plain things like rice, pasta, eggs, toast, buttered tortillas, crackers, etc) Some days I could eat more than others. In between tried to snack on plain crackers but even that can be tough at times. I would say eat what your body will let you...it is different for everyone (I could always eat bean burritos, but for many that would have been an issue).

Let us know what the Dr says.
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-14-2015, 07:33 PM   #4
Intel Dan G
 
Join Date: Aug 2015
Location: Bethlehem, Pennsylvania
Thanks so much to 24601 and Teeny5!! Your replies were helpful and comforting!!

Hi Everyone,

Update...

By calling the GI doc scheduling office every morning (which they suggested I do), I got an appointment today.

Doctor's assessment (pending the SIBO breath test & CT scan results) is that my symptoms are due to SIBO and will prescribe antibiotic.

What I did not mention above is that historically 2-3 times / year I get a sinus infection that requires antibiotics and of course I take super probiotics during and after completion. So I would have been inadvertently clearing out and resetting the flora. HOWEVER, this year, I did a better job managing my allergies so it's been 11 months since my last course of antibiotics.

------------------

So I am quite the coward when it comes to doctors and medical treatment (and most especially some of the tests they prescribe). I also tend to fall apart when my guts do things I am not accustomed to fearing another blockage since my surgeon left me with the impression that I am quite susceptible due to unusual scaring.

I've read here about the relationship between stress/anxiety and GI discomfort and I had a vivid demonstration of that today.

Despite having prepped with an Ativan, I was a total wreck this morning. As I showered, dressed, and drove to the appointment, my guts hurt more than they have since the actual blockage. I was even having some shocking tiny muscle spasms in my lower belly.

With my belt on loose (to alleviate any pressure) and my trousers riding high above the waist to keep the belt away from the sensitive lower abdomen, I walked very stiffly into the office and sat/moved so as to avoid any excessive bending.

But as soon as the appointment was completed with what I consider to be nearly the best possible outcome (and no talk of certain other tests), I was relieved and relaxed and.... like magic... my GI discomfort was all but gone (still bloated of course but no longer sore and so sensitive).

Stress/anxiety must cause some significant muscle tension affecting the intestines (which perhaps are themselves muscles).

------------------

The Doctor encouraged me to be less fearful of eating (different than not having any fear mind you!) and just remember: no big meals (less more often), nothing that causes gas in and of itself, and chew, chew, chew (just in case there is a partial).

Thanks again & Love to you all,
Dan.
08-14-2015, 09:57 PM   #5
teeny5
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Great news Dan!
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