I am looking for people who had or have Hirschsprung

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weewee

This is my second battle with Hirschsprung. The first case was when I was about 2 till age 5 and had a colostomy for 3 years. Then they did a reversal. I lost, at that time, 12 inches plus I gained all the scars. Then, 25 years later, they operated on me for scar tissue removal. Then, 8 years after that operation, I landed back in for another surgery. I had a hernia in the belly button. Now, I made 14 years after the scar removal, I got sick and now I have a colostomy and have lost another 18 inches plus went through 2 surgeries in the past year. I have only found a couple people with Hirschsprung's and you both got the baggy and no reversals mentioned in the near future.

I would like to hear your stories because I am arguing with the dumb azz that isn't paying attention to all the surgeries, how long it takes me to heal, and scar tissue. 2 hernias I have had plus the 3rd waiting to be fixed and the loss of more colon for guesswork and a maybe that a reversal might work or can fail and end up back where I am, being on the bag. Don't bother me, but him being a pompous ass and setting limits then not backing them up is a big bother because he will say one thing then tell a different thing on paper so that it says I can go to my "normal" lifestyle which is no way even close to what I used to do. Manual labor jobs that required heavy lifting, bending, stooping, twisting, pushing, being an ox hunting and/or dragging the animal out that I chased for miles of walking in the mountains. If you saw me walking down the street, you wouldn't think I have a problem till I pulled up my shirt. The limit he gave me was a 20lb weight limit due to all the hernias and lo and behold, that didn't stop the 3rd one. The more I walk around, the more I change. Stoma doesn't stay the same size. I can change up to 5 times in a day depending on the heat and what I do. If I don't do anything but sit on my buttocks, I will make it 12 to 24 hours before I change.

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Past Member
Well, it sounds like you are having a difficult time of things. Our system in the US is not designed to help people who can't work...rather people who won't work. You cannot apply logic to anything the govt does... it only wastes your time. I would suggest that you hire a lawyer and try to get disability...be advised...you cannot apply for disability if you have a job....{re-read second sentence}. A large percentage of ostomates develop hernias...there is no way around it. In my opinion, it's not a matter of if you will develop one...only when.
Have you tried the Eakin rings to increase wear time and a convex flange?? I would be glad to speak with you on the phone or through emails to see if I can help with getting a better seal and less frequent changes. I assume you do not have enough colon remaining for irrigation?? It will greatly decrease leaks...since there is nothing to leak. My heart goes out to you in this difficult time...if I can help, PM me for contact info. Keep the faith...you will manage. Regards, G.
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Past Member

I was born with Hirschsprung's Disease and have had all the 'fun' that follows... Ostomies, pull-thrus, scar tissue, hernias, blockages, etc... If you need to chat, I am available. I am currently unable to work with no option of working foreseen in the future.

weewee

Yes, I would like to email anyone that can help. Since I don't have a job, I can't pay for membership. So here is a way to contact me: I go to the free chat and I am on Mountain Time. If there is a time that we can meet there to exchange info, I am always up for that. Talk to all soon.

Past Member

I'm working on your membership here...give me a few days....G.

 
Living with Your Ostomy | Hollister
tiger227
Hi

I would like to know what Hirschsprung's Disease is. I have never heard of it.

I had a stoma fitted after a ruptured bowel, which nearly cost me my life about 10 years ago.

I now lead a healthy and fulfilling life with no thoughts of a reversal.

Take care.

Speak to you soon.

Jean
Faith4Today

I never had issues as a child, but ruptured as an adult and after a trace marker test, we're still in the colon post 6 days, they decided it was a "possibility". However, after a 1 1/2 with a colostomy, I went for the reversal. The descending colon was removed then, but still had issues of constipation. So at the reversal, we also took the transverse colon. The reversal was a success. I still deal with constipation, so I guess we should have removed more. But life is good, and I am just more diligent to keep track of movements. As for a short comment on the sex department, while having the ostomy, I had a conjugal visit with an ex, who made a valiant effort to ignore it but reluctantly left the room unsuccessful to deal with repulsion. Needless to say, even after the reversal, I have body issues.

Past Member

I went online and read about Hirschsprung's Disease. There are so many things I didn't know about intestinal diseases and problems. And part of the lack of knowledge is because of our keeping it all 'secret'. I did send a note to Dr. Oz about putting a program on TV about the subject of ostomies and relationships - hope they do. Education helps with many stigmas that shouldn't be.



Faith ... I return to many previous comments and expressions of gratitude about our "jerk detector". Saves a lot of wasted time on someone who can't deal with differences. Different is only different - I hope we get over the idea that different is wrong.

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