Diverticulitis Support Group

No apologies.... I am in the same position as you, only further along.

My story may scare you even more, but basically, I was on Cipro and Flagyl. (you may want to ask about getting both--sometimes it works better). For me, it was too late, though, and my large intestine ruptured. Emergency surgery. Uninsured (due to pre-existings). 3 hospital visits because after the surgery, they didn't give me any antibiotics when I was discharged. Infection set in on the "detatched" part of the intestine. Wound up being admitted again, with IV antibiotics. Since I got over that, I've had few problems other than the standard issues with the colostomy bag. Recovery for me took about 2-3 months.

Now for the second part--reversal. I am medically ready but can't afford the procedure. It's elective and not an emergency so they can require payment up front. Right now I am researching a bunch of things, but have no solution yet.

For you, u have a child, right? I'd get enrolled in Medicaid (if possible) ASAP. This a very serious and expensive disease. But, if you plan ahead maybe you won't wind up like me....

Okay, well now I feel worse. So basically everyone that has diverticulosis/itis ends up getting surgery???
So I guess I need to quit my well-paying job right now, go on Medicaid, and lose my house?
What kind of life would I have then? I think I would prefer to keep my job and just die from this.

Dear Cat, You are right - this disease is difficult. If you read many of the posts, our friend "4 strikes" has a lot of good things to say about taking Mesalamine (Asacol, Lialda, etc.)and how it helps some people. CHECK on it. It may work for you and save you from surgery. Where are you located?

Hi Cat59,

Here is an option that NO ONE has tried but me. Get into a clinical trial for Mesalazine, the most promising drug in the pipeline to stop diverticulitis attacks. Free drugs, free colonoscopy, free checkup every two months (check dozens of blood tests made), Urine check, physical exam - PLUS they give YOU $50 a visit.

You just can't beat that. There is one catch, you might get placebo - 1 in 4 do.

http://www.clinicaltrials.gov/ct2/...

http://www.clinicaltrials.gov/ct2/...

Find a location near you - there are many.

Surgery is mostly for complications. Only consider it for other than complications after 4 attacks or three attacks in two years and you have failed Mesalazine.

I have been in the study for 8 months and I feel great!

John

Hi Cat,
I feel so bad for you. This disease is terrible and can strike in a heartbeat. I will say some prayers for you. If you need to go to the hospital, try talking with the social worker. Maybe, there is temporary assistance they can get for you. Take care, Mary Anne

my dad has diverticulitis and has never had a surgery or ended in the hospital with it. I on the other hand perforated my bowel and ended up in the hospital with surgery and the works. But not everyone ends up with surgery. You just have to try and find out what works diet wise for you. I have had some recent attacks and I have no intention of ever going through surgery again. Will it happen I don't know but I am working on it.
Tloree

No, Cat. Not everyone needs surgery. My grandmother had DV. She needed surgery. My father has it, but has never needed surgery. I have it and you read my story already.... It all depends--every case is different.

BUT, if you are uninsured, make PROACTIVE STEPS just in case. This is a very bad disease that can strike without much warning and can require emergency surgery.

Another thing to consider: those of us who have emergency surgery usually require very invasive surgery along with a colostomy bag. Those who have it done PROACTIVELY often can have it done laproscopically and go home with no colostomy bag. I was told be the doctor that if there is an active infection, it is considered a "dirty wound" and they have to do it the hard way. If there is no infection at the time of the surgery, usually they can do it much more easily. Looking back, I would have had it done proactively if I had the chance.

Whatever you do, you need to discuss it with a doctor--don't put it off....

Hi, I live in Co and we have a program through the Univ of CO for the uninsurred in our state. Alot of states have an insurance program for those who are uninsurable etc and it can be lower cost. Look into that. Let your doc know what is going on financially-they are there to help you. You dont want to be in an emergency surgery position. I had lapro surgery last week and am doing great. Also I might try to get creative and even set up a medical cahrity fund for myself on the internet. I have heard of people doing that on the news. Good luck. Amanda

Also take 4 strikes advice and get into a free study on Asacol. I would give that a try. the drug is a live saver for many people. amanda