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Just A Little About Me

Im a 23 male from Ireland.
I was born with imperforate anus and im looking for other people born with it as i was lucky enough to be in hospital as a child with an other person who had it but was stupid enough to lose contact with them and havnt spoken to anyone with it since.

Iv looked online for other people with it and found support groups for parents of children born with it and they are great because parents also need help with the challenges that come with imperforate anus and realated illnesses but found nothing for the people with it older than 16 years of age.
So this site popped up and i found the odd post about it but they were years ago so im hoping that those people and more are still using this site and will join this group.

Over the years this has affected every aspect of my life but iv learned to live with it and accept it.As a teen i didnt play sports or do well in school and was very antisocial and turned to drink and drugs just to fit in with a group of people which i still have friends out of but just not as close.I often feel alone and worthless but then i see what stops other people and i am kinda thankfull that i was born the way i was because it does take alot to stop me now but it still torments me beyond explaination.I dont drink or use anymore thanks to the best family in the world.

I know this isnt the biggest problem in the world but I still think there should be a network of people there for the people who actually have it just to talk and anwser any questions that other sufferers have.

So if you have it please join or make contact no matter what age you might be or any other health problems you might have.

I wont just forget about this post/group because i cant be the only one looking for other people with it.(sorry about some of the spellings) Thanks for reading. :):)

I would also like to thank all the nurses and doctors at our ladys childrens hospital crumlin in dublin and cork university hospital. 

imperforate imperforate 22-25, M 16 Responses Mar 1, 2013

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Hi, I am so happy there is a group like this. It can be very tough dealing with AI throughout the years.

I was born with AI 42 years ago as well. I have went through so much, using enimas, miralax, strict dieting, etc. I always spend 4-6 hours at least once a week in the bathroom. I did have an artificial bowel spincter implanted back in 1999 by Dr wong. It worked really well for like 7 years but then stopped and the replacement didnt work. Might have been how the doctor implanted it (Dr. Wong was incredible but he passed away). Now I hear about the sacral nerve stimulation procedure but all I ever hear is just get a colostomy. Has anyone in this group gotten a colostomy? Also, has anyone gotten disability from this? Having the the most difficult time trying to get it approved.

Hi everyone, I was born with AI 42 years ago and had the opp when I was 2. I lived with this all my life and just got by with wind pains and tummy cramps, I am only now realising it is my AI that has given me jip all these years. I have had 3 children all naturally although I have just found out that that was not so good as I have damaged my down below scarring and find it worse than ever when I go to the toilet. Eating bread or stodgy food is very painful when I go to the toilet. Saying all that I have just run a marathon and done the 3 peak challenge so although it's a pain in the arse, haha, life still goes on!! My mum and dad still get emotional when they talk about what they went through for the first 2 years of my life. So nice to hear that there are others like me with uncontrollable bowls and embarrassing sounds and smells. Just as well my family r so understanding. Lots of love to u all, we r a rare bunch and that makes us special xx

How r u doing?

Firstly, I'd like to start by saying, its great to find a forum like this for people born with imperforate anus, and not just the parents (sorry parents).

Hey everyone, my names John, 20 yrs old, also from Ireland (yup outta that!). Was born with imperforate anus. Im very lucky as I don't suffer from incontinence, although it was a problem in my younger childhood. But I have only been able to live normally through doing enemas every 2 to 3 days since birth. Still not as bad as what most of the responses here have been through, and it doesn't affect my day to day life. I was also lucky in the fact that I had loving parents, and my mother is a nurse, and she was very dedicated to ensuring that my life would be as normal as possible ( she performed the enemas on me until the age of 12, when I started doing it myself.

As a child I spent so much time wondering why I had to put up with this (excuse my colourful language) sh*t. I couldn't envision myself living normally outside of my family home, and also problems with school as well as suffering from spasms and having an unnatural curvature of the spine meant I was pretty miserable during my teenage years. I was coming to school drunk every day and started smoking weed regularly in school breaks too, my reputation wasn't the best to say the least. I also had maybe 8-10 serious small bowel obstructions in my childhood caused by adhesions (scar tissue)

Then my story took a more cheerful turn, I passed my exams and left my home to study in a Galway city. Yeah, that didn't go too well. I started busking to make money, and dropped out of college after 2 months. Its not as bad as it sounds, I made some fantastic friends (mostly buskers themselves) and discovered that music was what I wanted to do in life. I also discovered that (and this is important!) if I told my friends/housemates what I had to deal with, ALL of them were understanding and none of them made me feel like this was something to be ashamed of. In fact, they were touched that I could share something so personal with them. I discovered that I did not have to hide it from the people I lived with, which made my life so much easier when I would disappear from the room and stay
in the bathroom for 40-60 minutes. I also have a great girlfriend who I live with, and who has always been completely supportive. I should mention that its not something I advertise. But telling those closest too you will make your life much easier. I suppose it is also a lesson to choose your friends carefully.

It is no longer something that I think about or that gets me down. I am the boss of my own body, not the other way around. I am completely happy in life, living from music every day and experiencing as much in life as I can. I don't drink for the sake of getting drunk anymore. I still smoke weed ( what? I like it :D also, most of my friends are hippies/stoners/all round chilled out people) but not excessively.

sorry for rambling, but it is easier to type this stuff then say it. I know everyones specific problems are different, but as my dad always said to me " Everybodys got or will have something wrong with them"
Also, many thanks to the staff at crumlin hospital, they were always fantastic.
I hope anyone who reads this will take something positive from my story, and yeah, lets keep in touch guys, theres not many of us.

Ps, I'd like to finish this by adding that I have been living mostly vegetarian for the last 2 years. I would definetely recommend it. I haven't had a serious bowel obstruction since I stopped eating meat, and my spasms cleared up. Another friend of mine who suffered from very serious hayfever for most of his childhood found that when he stopped eating meat, his problems cleared up nearly completely.
Coincidence? I don't know, but I remember eating at a fast food chicken place once, where the food had so many additives and salt in it that the chicken didn't even taste like proper chicken anymore. About an hour later I was barely able to walk 2 steps without getting a spasm ( it was never that frequent, and I'm convinced it was the food) I'm not saying never eat meat, just try not eating it as part of your normal diet. If anyone else trys this, I would love some feedback.

And again, sorry for writing a novel, but it feels good :D

I was born that way too and it's so hard to find support groups or online forums for adults with this condition. You are not alone. I am a 32 year old woman living in the U.S.

Hello, I'm Greg from Florida.I suppose I'm fairly lucky, since I was born with the 'low' variety of IA. Still, I probably spend at least 2 hours in the bathroom every day. Also, I didn't learn until the age of 16 that holding in gas is a choice for people born with sphincters.<br />
<br />
I'm here to ask if anyone else has heard about a certain surgical procedure. A few years back, some one described to me a procedure where muscle is harvested from your leg, implanted in your rectal area, and then innervated which then results in better bowel control. Does anyone know the name for this, has had it done, or knows the general outcome of this?

They stopped doing the procedure, now they are trying sacral nerve stimulation but with only a 25% chance of working cause they don't know how deformed the nerve may be.

Hi evry1,m 21 yrs old girl born with ia high lesion,my life has been quite tormenting n i ve been vry secretive person ,ifeel its kind of quite lonely life n problems come up daily n no one wud eva undrstnd wht u go thru ,nice 2 hear 4m u all,plz excuse my spelling mistakes

My son has IA and we are at the point of deciding if he should have the Malone procedure. Any thoughts from those of you who have lived with IA?

Hi,
Back in March 1956 i too was born with no back passage.After 6 months i had my back passage opened up and have lived life with no control at all. We are a not alone.
Please forgive my spelling but i think people with this condition will understand.I missed most of my early schooling .

Hi all,
My name is Greg, I'm 49 years old and was born with an Imperforate Anus also. This is great to actually read and find real people who actually live with our condition. I have read so much medical information on what the condition is and how after you have all the surgeries as a child you then should be able to live a "normal life" because the surgery has corrected the condition. How wrong all the "experts" are and as I've got older it has been harder to deal with, both physically and mentally as well. I have never met or spoke to anyone else who has our condition and the only people who have been able to have some sort of understanding have been my doctors. But to talk to someone who actually truly understand what we go through would be incredible for me. I lived with my condition in secrecy for 45 years and the only people who knew were my ex-wife, parents and doctors, I've never even been able to even open up to my brother about it, was to embarrassing and humiliating so I lived a life trying to cover myself and not get caught out about what I actually go throw each and everyday. 4 years ago after i had to give work away due to the physical and mental toll it had take on me i decided to "bite the bullet" and actually tell close friends and family what i have been living with. Did it help me, i can't say yes or no, because i still had to live with the issue everyday, but at least it explained to people why i had to give work away. How as a male would you expect your male friends to understand such a sensitive and uncomfortable topic as incontinence etc !!! I would love to chat to anyone who suffers from our condition and share our experiences. Greg

My name is Alexander, I'm 20, and I too have an imperforate anus. I'm from Colorado and, like you, have experienced a significant amount of difficulty coping with this malformation. Most of my issues are with incontinence and constipation which is hard to work around in a public environment. I've become somewhat of an introvert, but I keep my friends as close as possible. None of them know that I have this condition, so I cultivate the "I'm the weird, artistic guy that spends his time doing homework" personality as much as possible. I stay as active as possible, but any sort of physical activity is done by myself to avoid any sort of awkward situation I'd be happy to chat more about living with this crappy condition (pun AND aliteration, boom) if you're comfortable with it! I've been searching the net trying to find ways to live a healthier life with this myself.

hey alexander
how are you?
thanks for replying...
I like the way you said awkward situation...lol

Hello everyone,
I'm so happy to find this blog. I felt so alone dealing with this all my life. Im 26 and it's a constant everyday battle for me. It has affected my school and now intimate relationships. I am so happy to find ppl that might be going through this a well. Thank u for sharing.

hey nyiel,
glad to hear from you...feeling alone is what drove me to put the post up...its possibly one of the hardest things to deal with...where u from??

Does anyone have chronic pain in that area sometimes dibilitating?

hey reeacer
tanks for replying, well I couldn't say the pain i get would be debilitating but yes sometimes I get pains in the mid to lower stomach area, its kinda like the seasons of the year, it can be good bad or middle of the road.
there is an other website called disabilinet.com with people suffering from a whole different range of disability's.Its small enough but I think once it gets going it will be great..

My husband was born with this too. He is 45 and would love to be in contact with other adults that are dealing with this. I have searched online for others like this but the majority of what i find are things about children. Well those children grow up and become adults living with this.

Hi there, I\'m a 49 and would be happy to discuss with your husband, i have no doubt we would be able to totally relate to what we deal with on a daily basis with our condition. Greg

I am 19 and from the USA.
I was born with it and have had other problems never known what "normal" is , except for my normal, sometimes I am jealous of other people who are "normal". However I am used to my normal and enjoy all that I have been truly blessed with.

It is interesting to explain to other people...that is for sure!! I have also had a spinal fusion due to scoliosis - I have two titanium rods attached to my spine). I enjoy saying my back is stiff - it is funny when some people get it and other people do not.

I truly hate being around hospitals and needles but I do, like you, truly appreciate all they have done for me and for others.

Hi AFoe
How are you?? thanks for replying,
Its kinda funny that people with similar problems from different sides of the world can make contact..
sorry to hear about scoliosis,i wont lie i dont know much/anything about it.Im assuming its not a quick fix???

I was lucky in that respect, i only have I.A.
there is an other site called disabilinet.com for people with any form of a disability if you want to check it out, really sound people on there that dont complain about a runny nose:):)

i have the same case as you

Hey Geirkztilb
How are you?? thanks for the reply.
Do you have any other condition??where you from??

if im being nosey just tell me,i dont get offend easily:):)