Hirschsprung: Positive stories please....

[SHHHH]

Well I have stayed away from mn since ds was born as when he was 3 days old he was admitted to our local childrens hospitals with symptoms that they related to hirschsprung's disease...

After a week he was allowed home and atm is doing well, gone from 9lb 13 birth weight to 11lb 4 and is eating and pooing really well.

Well finally a biopsy sample has been good enough (3rd attempt) and today we found out that its hirschsprung that he has.

I'm empty . Relieved that it is what they initially thought (honestly, things that were suggested insead don't bare thinking about)and that at last we now know why my little boy was so ill from birth BUT so sad that he now has to undergo an operation....

We are due to see the surgeon on fri and they plan to operate within a few weeks but I just wanted to see if anyone has any experience of it and is able to put me at ease.

PLEASE DON'T REPLY IF IT'S NEGATIVE AS ATM I REALLY COULDN'T COPE WITH SUCH INFO WHEN I AM DAYS OFF SEEING THE SURGEON AND UNABLE TO HAVE MY MIND PUT AT EASE IYKWIM.....

Anyone been through what we are going through with a good outcome..I did finally google it weeks ago after weeks of stopping myself and tbh i wish I hadn't..I scared myself. .

I just want to know that there is light at the end of all of this and that my son will know no different. He's only 4 weeks fgs and shouldn't have to go through this..I blame myself.....

losty, sorry I haven't been around for a while but our laptop in the dining room broke last week so the pc is on the 3rd floor and its not easy getting time to get up there with 2 lo's.!

Well we saw the consultnat surgeon and he seems confident and ready for the op this fri (30th). He answered all of our questions although I can't say I am ease and until this is all over with I doin't think anything anyone says or does will iykwim..

The operation will be the "pull through" type where they will rectify it via ds bottom, only if its affected more of his bowel than 1st thought will they then need to go in via his tummy. We are praying its not badly affected and he has mild hs. Surgeon seems happy that come sun (2 days after operation) we should be ok to go home..possibly longer..mon.

Ds seems ok, well as well as expected. He is still a constant worry and is not 100% but we hope that come friday all this will be a distant memory. Its hard atm to know if he is like he ill because he is a typical baby or because of hs. Its also hard on dh & I as we are snapping at each other mainly for no reason. .

So friday its back to the few days of shifts for dh & I as we spend the w/e at the hospital but I don't care, as long as all goes well.

Please think of us come friday and keep in your prayers. Just hope someone is looking over us.

hk78,following on from your comments about denise welch...I found some old copies of ok magazine on a clear out last week and one copy was of denise and others who had recently given birth (2001) and in her bit it mentioned hs. Know what its bizarre that I found this magazine with this article just when we are going through the same thing. Made me think that all those years ago I would have read that article and have not given it a 2nd thought. Amazing how much life can change in a short while.

xx

Hi,
Just to update this thread. DS has the operation on the 30th and all went well. The surgeon was pleased with how it went and I was so relieved it was over with and all we had to do was to get ds back to full fitness.

I was nieve.... Saturday saw ds doing well and he started to feed. He was sick on saturday but only small amounts and there was no real concern. DH was doing the day shifts and I was the nights and it was late saturday/early sunday when I noticed that things were not 100%. DS refussed his feed at around 1am sunday and was sick quite a bit. Upon laying him in his cot I noticed that yet again his tummy was distended. I shouted the nurse who agreed it was not right and called for the doctor. DS was examined and I was told it was wind..WIND...I have watched him suffer with hirschsprung for the 7 weeks of his life and I felt this was NOT wind but I think I was seen as an OTT mother. I was advised to feed him and to continue to wind him. I took my own advice and tried to wind him BUT no way was I feeding him, he was in pain and it didn't seem right iykwim.

Come sunday morning 2 registra's saw him and both agreed he needed to be xrayed, so off ds & I went. Upon returning the ward his xray was viewed and I was told he had entrocolitus (sp..), basically his colon was swollen and they thought it was infected which is common with hs babies/patients. I called dh and within 30 mins of him arriving ds was sent off for more surgery. Something I hadn't expected 2 days ago. The only option was for ds to have a stoma fitted .

So aftre being in hospital for a week ds is now home and seems to be getting stronger each day. He is now 8 weeks old and is tollerating more food.

We are still new to the stoma and are coming to terms with it. Yes it will take time to get used to it BUT I am just glad..as it saved his life. No if's no but's. They are not 100% but think the stitches came apart and poo leaked into his tummy causing infection. BUT nothing is certain and they wanted to sort things asap for ds and to come out of his tummy asap.

We are aiming for it to be reversed in around 3 months time although this isn't definate util the surgeon see's ds in around 1 months time. He has to undergo anesthetic again and he checks his bowel has healed and that all seems to be functioning as it should be.

We were warned that a stoma may have been an option during the 1st operation BUT when he came out ok I honestly was relieved and never thought of it again.

So we now face a few months with a stoma.I think its harder for us than it is for ds and hopefully this will be an episode he will never remember.However I have kept a record and intend to tell him when he is older where his tummy scar came from.

Just to say thanks to those of you who advised me on this thread. Things didn't turn out as planned but suppose life is like that. Doesn't matter whether we take the short cut or the scenic route, just as long as we get there eventually.

Currypowder, your post constantly repeated itself in my head while I was in hospital: 'His engine is fine, it's just his exhaust that needs a bit of attention'. I appreciated it. Thanks xx

shhh - sorry that things weren't as straightforward as they might have been. Glad that you have him home now though and hope he goes from strength to strength.

You're right too that he'll know nothing of this tough time - though it'll be ingrained in you memory for a long time.

Remember - scars are the tattoos of the brave.

saggar thats another lovely thing to remember iykwim. We seem to be doing well although I must admit its hard...so effing hard. . Not the stoma itself BUT looking at ds with it and just feeling so very sorry for him. I just feel how the hell can I as his mother put him through all this..I NEVER regret him for a second BUT I just feel like if it wasn't for me he wouldn't be going through this.

I know I shouldn't beat myself up but I just think why why why....

We are having problems with feeding which everyone seems to think it related to wind and typical of some babies and not related to the operation BUT it seems that we are in the middle of 2 sets of medical professionals (surgeons and HV) and noone can advise us totally on his feeds and the effects of the stoma iykwim. Have a stoma nurse due later today so maybe she can shead some light.

Thanks once again for everyones support. xx

hi shhhh, i was looking for support groups and came across your story i my son has hirschsprung's, he passed his meconium but failed to pass any more after that he was lactolose and suppositories which never helped him he would be crying in pain from the lactolose and crying because the suppositories didnt clear him enough...for 6 months we went round the bend they suggested nothing was wrong with him apart from serveve constipation advised to change his milk several times which did no help for him. for 6 months his milk intake with so little 1oz every hour or so which meant poor wieght gain. consultants at hospitals were also at a lost cause. one day his stomach ballooned up like he was about to have a baby and i took him straight to a&e where they knew straight away what he should be tested for he was transferred to great ormond street and they performed rectal washouts for a week to empty his stomach quite heartbreaking to watch your child go through this for 6 moths but relieved someone had a answer eventually.... we was discharged and sent home for a month while having to do 3 rectal washouts a day, as he was at a weaning age we had to continue feeding him (we started to wean at 4 months as hv suggested this to us as the poor wieght gain) this didnt helped and we were admitted in again for surgery asap! afterwards he amazed how well he recovered and we was home within a week no more washouts, no suppositories or nothing and when he did his first poo i was so happy which only a parent who has gone through hirschsprungs would understand i guess.

now he is 10 months old, he still has his poor wieght gain but has fully recovered from the operation can poo up to 15 times a day with bad nappy rash. feeding wise is fairly difficult as some foods can make him very constipated and he will be in pain and have a swollen tummy again and than i have to make sure he gets a lot of wheat to relieve with leads to runny poo, its a very long cycle and i wish every parent who is dealing with this type of problem strength and hope that it will get better for them and their child.

i agree there is not enough support out there from the day he was born till now some people have still blamed me and called me a paranoid mum.
i wish i knew more about what i can feed him, and things like that