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4 month Crohn's flare: I am in so much pain and I'm afraid to eat


Tue, September 22, 2020 7:46 PM

Hi everyone! I want to finally ask question on this forum, I am so desperate and I feel like my back is against the wall. I've had Crohn's disease for 4 years, and I've had a couple of pretty bad flares. This summer marked the worst flare I've ever had in the past 4 years. I've had moderate to severe pain everyday since late May of this year. In the past 3 weeks I've had extremely severe pain and vomiting. When I was still confident enough to eat, it felt like the food was stuck in my GI tract, and then I would vomit hours later. I haven't eaten a meal aside from a few saltine crackers for almost a week, but even though I haven't eaten anything I still have severe pain,nausea, and completely liquid stool. I take mesalamine and imuran, but at this point it doesn't even feel like any of those medications are working. The worst part of all of this is that my insurance coverage doesn't begin until November. I have a little over a month before I can even get seen, and I don't know if I can last that long. I'm even contemplating quitting my job because the pain is too severe. Has anyone been in a similar situation? How did you find the will to keep going? How did you deal with the pain in the absence of effective treatment? Any help would be greatly appreciated!

FPO AoNyeee
Joined Sep 22, 2020

Sat, November 20, 2021 2:49 AM

Reply posted for Dc10.

This post is about the four months I spent in pain because of Crohn's. It wasn't until recently that I realized how bad it was, but after reading some old entries from my journal, I know that there were days where I would have been better off dead than feeling the resumes planet way that I did. If you are looking for a blog with happy stories or something to inspire you then this isn't the place to be.

FPO Marytrickl
Joined Nov 20, 2021

Sat, November 14, 2020 1:09 AM

Reply posted for AoNyeee.

i have crohns, over 21 years of experience.

i can tell you that i experience everything you have mentioned. i have learned that sometimes eating just isnt worth it. in times like these i switch to a strict ensure diet. this will give your body what it needs but also let it try to relax without having to break down foods. i believe in pain medication but only as a last resort. believe me i have suffered just like your self. you must be careful and continue to drink, as im sure you have found out after a while your body will reject everything you put into it after long periods of not eating. you must start back off very slow. i also suggest smoking weed to help with the constant feeling of nausea. when i experience long stents like you described i go to the ER for pain meds and blood work and or scans but just as important IV fluids.

hang in there you are not alone.

FPO JoshuaModepc
Joined Nov 13, 2020

Mon, October 05, 2020 6:31 PM

Reply posted for AoNyeee.

Hi, I'm so sorry you are going through this, it's a horrible debilitating disease. I have Ulcerative Colitis going on 35 years so I know what you're going through.

ive been pretty much in remission for the past 8 years with only a few flares in that time. 

My diet plays a big part in controlling my symptoms, I eat very little dairy products, I supplement with flax milk, violife non dairy cheese. I try to avoid gluten but don't totally remove it from my diet. 

The big aaha moment came when I went to a Naturopath, she put me on a medical grade prescription strength probiotic called VSL#3, 900billion strength packets. Visbiome is another option, same strength and prescription requirements.

You need to get a prescription, you cannot buy this strength over the counter. My flare (when I do get the) went from 3 month down to 2 days. I use this in conjunction with Asacol 800mg.

I hope you see relief soon.

 

FPO VB1986
Joined Oct 5, 2020

Wed, September 30, 2020 2:04 PM

Reply posted for AoNyeee.

That kind of pain and nausea sounds very similar to what I felt when I had bowel obstruction due to strictures in my small bowel.  I saw several different gastroenterologists and surgeons, was hospitalized 6 times, but it wasn't until I connected with the right doctors that I had surgery and then felt better.  If your gut is damaged from inflammation and you develop strictures, there's nowhere for the food to go so you are in terrible pain.   Not saying this is your issue though.  Is it possible for you to go to a doctor at a teaching hospital where the costs might be covered?

FPO Dc10
Joined May 6, 2019

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