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Suffering so much I have lost all hope and ready to throw in the towel, any suggestions?


Thu, February 13, 2020 9:31 PM

Diagnosed with Crohn's Disease 3 years ago.  I have nonstop watery mushy diarrhea every single day from 8-15 times per day with nonstop severe burning, stabbing all over belly pain.  I wake up every couple hours at night with accidents in diapers that I have to live in due to severity of diarrhea.  I have tried prednisone which doesn't do anything except make me hungry and eat more food which causes more stomach pain and more diarrhea.  I have been on Remicade which gave me Shingles and I have been on Stalera which gave me tremors and neither one put me in remission or helped with my symptoms.

I also have chronic pain, chronic migraines, Sjogrens, severe arthritis and osteoporosis for my age 55, and have lost over 30 lbs.  I can't gain any weight with the constant watery diarrhea.  I also have pancreatic insufficiency and have chronic kidney stones and kidney disease.  

Right now I wake up every day I try to figure out a reason to live another day.  All my gastro doctor wants to do is another colonoscopy which I don't want because the cleanse and the procedure will just cause more pain and he just doesn't get it.  He wants me to try a higher dose of Remicade even though the lower dose gave me a severe extremely painful case of shingles.  So I really don't want to take the chance of going back on Remicade again and getting shingles.

I also have a bad concussion from being so weak and dizzy that I have fallen 4 times and hit my head.

The only thing that helps is not eating.  Some days I try to only eat toast with honey just because I have to take my medicine with food.  My meals are delivered and I don't get a choice on how they are cooked.  I am currently too weak to cook my own meals and don't get enough food stamps at $79 a month to even buy healthy food that might be better for my digestive system.  I know I need to eat better.

I had some soup tonight and my stomach has not stopped rumbling and gurgling since.  This will continue until the diarrhea starts.  All because I decided to eat something tonight.

I have no social life because I can't leave the house or be away from a toilet for more than 5-10 minutes max and that is pushing it since I will even have accidents if I go that long.  I haven't had a formed stool in over 3 years.

I haven't been able to find a good gastro doctor and had recently switched to this one but he is worse than my old one.  They are in the same practice so I don't know if I can go back since this one doesn't listen to me.  He keeps telling me to go to the ER and get admitted for a colonoscopy or he won't fill my medicine.  As of right now I just quit going.  All he was giving me was prednisone which I just got off of due to hunger all the time.

I'm sure my diet is a problem.  I do take probiotics.  Bentonite clay is one of the only things that will stop symptoms for a day if I drink a lot of it.  I have to be careful since it can affect absorption of my meds.  The same goes for activated charcoal.  I take 15 loperamide every day and sometimes 18-20.  I take 3 bentyl per day and that is just to be able to leave the house for doctor appointments.

So I am open to suggestions on what to do.  I have heard about apple cider vinegar, reducing sugar and soda as far as diet goes.  I am lactose intolerant so I don't do dairy.

Where do you find hope to live everyday when God lets you suffer this much with no cure in sight or no remission in sight?

2/17/20 Update
I now have gone 4 days not eating and continue to have watery diarrhea almost every 1/2 hour.  I continue to have loud stomach gurgling sounds even though I haven'

FPO appleheadq
Joined Feb 17, 2020

Tue, February 18, 2020 4:52 PM

Reply posted for appleheadq.

Appleheadq

Don’t throw in the towel.   There is help and treatment.

There are many new treatments available.  You can find information on treatments at the links below:
 
https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/recently-approved-treatments.pdf
https://www.crohnscolitisfoundation.org/sites/default/files/2019-10/understanding-ibd-medications-brochure-final-online2.pdf
 
We have updated diet information that might be helpful for you including a diet brochure and videos at:
 
https://www.crohnscolitisfoundation.org/diet-and-nutrition
https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/emr/diet-nutrition-2013-1.pdf
 
We know that living with Crohn’s Disease and ulcerative colitis can be challenging.  You are not alone https://www.crohnscolitisfoundation.org/mental-health  .  Call us and we can discuss some strategies with you.   Call us at 888-694-8872 x 8or email us at info@crohnscolititsfoundation.org


FPO administrator
Joined Oct 12, 2017

Mon, February 17, 2020 8:20 PM

Reply posted for appleheadq.

 My Chinese gastroenterologist wrote the Rx. You’ll need a compounding pharmacy. My white pharmacist freaked out when I gave him the Rx.  It’s a schedule one narcotic, but don’t let that fool you, so is Ambien. And  it won’t get you high. It will help with the  diarrhea 

FPO charbs
Joined Oct 31, 2016

Mon, February 17, 2020 4:41 PM

Reply posted for charbs.


I live in Ohio USA. Where could I purchase this?  Thanks for your helpful response!

FPO appleheadq
Joined Feb 17, 2020

Mon, February 17, 2020 4:38 PM

Reply posted for jgraiver.

Thanks for your helpful response.  I have stopped eating everything you recommended except processed foods.  I live in the USA and receive free delivered meals and unfortunately they are precooked.  I ususually leave out fruits and vegetables since they bother me the most.

FPO appleheadq
Joined Feb 17, 2020

Sat, February 15, 2020 11:22 AM

Reply posted for appleheadq.

Try tincture of opium to treat the chronic diarrhea 

FPO charbs
Joined Oct 31, 2016

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