Seeking Stories from Those with Hirschsprung's Disease

this is my second battle with Hurshsprung the first case was when i was about 2till 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 removel then 8 years after that operation i landed back in for another surgy i had a hernia in the bellybutton now i made 14 years after the scar removel i got sick and now i have a colostomy and have lost another 18 inches plus went thru 2 surgies in the past year i have only found a couple people with Hurshsprungs and you both got the baggy and no reversals mensioned in near future



i would like to hear your stories cause i am arguing with the dumb azz that isnt paying attention to all the surgies how long it takes me to heal and scar tissue 2 hernias i have had plus the 3rd waiting for to be fixed and the loss of more colon for guess work and a maybe that a reversal might work or can fail and end up back were i am being on the bag dont bother me but him being a pompus ass and setting limits then not backing them up is a big bother cause he will say one thing then tell different thing on paper so that it says i can go to my "normal" life style 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 wouldnt think i have a problem till i pulled up my shirt it was the limit he gave me was of 20lb wieght limit do to all the hernias and low and be hold that didnt stop the 3rd one  the more i walk around the more i change stoma doesnt stay the same size i can change up to 5 times in a day depending on the heat and what i do if i dont do anything but sit on my buttocks i will make it 12 to 24 hours b4 i change

well sounds like you are having a difficult time of things. our system in the us is not designed to help people who cant work...rather people who wont 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 % of ostomates develope hernias...there is no way around it. in my opinion its not a matter of if you will develope 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 thru e-mails to see if i can help with getting a beter 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 go`s out to you in this difficult time...if i can help pm me for contact info. keep the faith...you will manage. regards G.

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 forseen in the future.

yes i would like to email anyone that can help since i dont have job i cant pay membership so here is away 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 xchange info i am always up for that talk to all soon

i`m working on your membership here...give me a few days....G.

Words of Encouragement from Ostomy Advocates I Hollister

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 , 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 sonn



Jean

I never had issues as a child, but ruptured as an adult and after trace marker test were still in 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.  Reversal was a success. 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.

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 ostomys 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 the different is wrong.