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Living with Crohns...

Hello everyone,
I was diagnosed with Crohns about 12 years ago - my early twenties. Over the years, I have found that Pentasa, at least 2 x 1000mg three times daily, works well to keep the flare-ups at a minimum.
Over the years, I have had health insurance off and on, depending on my employment. I went without any medication for over a year living miserably in pain.

I recently did not have health insurance for a period of 4 months, hence no medications. A week ago, I ended up in the emergency room due to unbearable pain that had been constant for hours - different that the usual. It brought me to tears! I spent 3 days in the hospital. It turns out that I developed a fistula between my intestines and bladder. Needless to say, seeing fluids in my urine that belonged in my intestines, was scary and weird.
Doctors told me with antibiotics, Pentasa and Prilosec, it should heal itself. I was initially given Dilaudid, then Morphine when I kept vomiting due to nausea. Stayed with Morphine (IV) until moving to orals, i.e. Percucet, in my last day.

Returning home, I was prescribed antibiotics, Pentasa and Prilosec. With me, Pentasa takes several days to reduce a flare-up, so I agonized in pain :ymad:, not sleeping. Today, I went to the local walk-in and asked for pain medication to get me through until the Pentasa did its thing. I was prescribed Percucet 5-325. Wow, I can relax and I feel normal! Pain makes you a different person.

My plan now, not having health insurance, is to contact the pharmaceautical company who makes Humira and request low cost injections that I can have sent to my GI to administer monthly. I truly hope this helps me stay in remission and hopefully gain some weight back, not to mention live pain free more often.

Matthew
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

I don't have experience with fistulas so I hope what they prescribed works for you. Do you know if you qualify or can apply for Medicaid? Or is there a low income health insurance option in your area? Here in San Luis Obispo County we have County Medical Services Program (CMSP) and although the coverage isn't great, its something.

Good luck to you! Keep us posted!
 
Mathew, hello and a big warm welcome to the forum :) I am so sorry to hear that you've been having fistula problems :-( Having had an enterovesical fistula myself, I know how painful and distressing it can be. Trying to deal with it yourself without insurance must also be very stressful.
I hope it does close on the meds you have now, but I fear that they might not be strong enough to do that. What antibiotics are you on? Ciprofloxin and Metrodinozole are a common combination when there is fistula involvement. I was given those and Prednisolone and Azathioprine ( Imuran ) to fight the flare.
You mention Humira, but have you also considered Remicaid? It's often prescribed to help fight fistulas, although it has a better track record with external rather than internal ones.
I know some of my US friends here are on a programme called Remistart which can help get you the med without insurance.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the forum! I'm really glad you joined.

Did the ER doctors tell you that the antibiotics, Pentasa, and those other meds should close the fistula? Or a gastroenterologist? I ask because I have read zero data that suggests that those medications would have any real success I'm afraid :( Like Grumbletum above, I think you may need something stronger and if you haven't conferred with a GI, I think that would be a great idea.

Please keep us updated and let us know what we can do for you.

I wish you well!
 
Thanks David, Grumbletum, and Crabby for your input and concerns.

I was admitted Saturday afternoon and went home 3 days later. All I knew for the first 36 hours was I had a fistula and we needed to relax my bowels enough to see what steps need to be taken. The GI doctor on duty informed me, after I asked on day 2, that they are hoping the fistula would heal in the hospital. I figured it would need surgery.

I was given an IV, liquid diet, Pentasa, Prilosec, strong antibiotics, and pain medication (Morphine, then Percucet on last day) and lot's of rest. On day two, my intestinal fluids were coming out through my urethra, shocking and gross! It took only 24 hours and my urine was clear. My understanding is that it had healed and they just sent me home with prescriptions for Cipro, Pentasa, and Prilosec to make sure it kept healing.

The extreme pain turned to the normal moderate pain when I came home and up until yesterday. It was pain from a bad flare-up that kept me from sleeping and doing anything productive. After asking around, I finally decided to pay cash at a walk-in and asked for some pain meds to last me until the Pentasa started working (3-5 days). I was given Percucet. I slept last night and was able to relax for the first time in many days. I haven't need the pain meds today, so that is good...

Matthew
 

David

Co-Founder
Location
Naples, Florida
Hi Matthew,

I can see how such an experience would be very distressing :( Hopefully it has indeed healed! But I would definitely followup with a GI so they can keep an eye on things.

I'm really glad you're feeling a bit better. Here's to that continuing!
 
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