Acceptance

[Old Crohny]

I have been fighting Crohns disease now for over ten years now and have finally arrived at a point of accepting the fact that I am never going to be normal again. My Crohns story starts over ten years ago at age 50 when I went to a Doc in a box complaining of constipation and severe abdominal pain. I was given what was a new drug at the time called Propulsid and was told that the drug would work better than a laxative because it would make my intestines squeeze harder and help me move the stools through my intestines. Less than a week later several diverticulum in my large intestine perforated and I was hospitalized for fecal matter in my abdomen. After several hospitalizations they removed 18 inches of my large intestines due to massive scarring. The drug has been removed from the market. The “doc” turned out to be a Physicians’ assistant and I was told that she had moved out of state when I got out of the hospital.

I spent the next six years thinking that I was trying to keep from perforating another Diverticulum, lots of pain, etc. I did ok but the associated issues kept getting worse until I started doing stints in the hospital again with more surgeries including a 6 inch resection of my small intestine to remove scar tissue and a confirmation that I have Crohns. It appears now that I had Crohns when I went to that doc in a box but things got distracted to the diverticulum when they got blown out from the drug. Over the last couple of years I have come to have a better understanding of my issues and think that I have been suffering for a long time but fought it in fear of getting hurt by another hack that took a shortcut to treating people’s ills. I now work with a team of doctors in a large city (Denver, CO). They include surgeons, GIs ,etc.

I have gone through the standard drugs like Entocort and have moved on to Remicade. I have had a couple of infusions with no relief yet.

 

[Keona]

Hey Old Crohnie
I remember the drug prepulsid/cissipride all too well. I was also on it a long time ago and they pulled it from the market because it was causing people to have heart disease/attacks and I believe there were a few deaths as a result. I also remember losing A LOT of weight while on it and most definitely worked as a laxative! There were several little tiny pills (could never understand why they didnt give me just one big one).
Anyhow, I am glad you found a good team and hope you find a drug that works for you. There are lots of really great people on here who have helped me immensely.
I am glad you found the forum
WELCOME!

 

[xJillx]

Hi and welcome! I am glad you are now getting the proper care you deserve from your Denver team, but I am so sorry it took so long!

Have you seen any improvement with Remicade? Are you taking anything else along with it? I sure hope it starts to work for you soon. Good luck!

 

[Astra]

Hiya Old Crohny
and welcome

I've never heard of that med, so I googled it!
Seems you had a lucky escape mucker!
Glad you're on appropriate meds now and also glad you found us!
lotsa luv
Joan xxx

 

[ameslouise]

Hey Old Crohny and welcome!

This disease is hard to accept - it took me months before I could even say "Crohn's" without bursting into tears!

But I do hope that you can find some relief thru the Remi or perhaps a combo of drugs. There are many success stories here and people that are feeling better, either thru meds or surgery.

I am 8 weeks post-op and just today I was thinking to myself, "Wow. I just realized I feel like a totally normal person again!" I kinda even forget I have a bag until I go to the bathroom!

So don't give up hope - you'll find lots of support and good advice here from many knowledgeable and kind people.

- Amy

 

[e13 boy]

Hi Old Crohny.

Hope you find the forum helpful.
I'd never heard of the drug you talk about.V sorry to read what a tough time you had with all the operations(been their so many times myself!).
I suffered for over 20 years before i finally found the help that i needed.Thankfully now i lead a normal life.
Also on this forum is a member 'Helminthic therapy' who like myself suffered for many years.He looked for 'alternative' help and had excellent success.

Hopefully one day you will find the treatment which will give you a normal life.

Best Wishes