Help, please, does anyone have experience of colostomy bags for babies and/or of Hirschsprungs Disease? New mum, just coping, could do with support.

[Aitch]

i'm posting on behalf of my SiL's friend, they've got a lovely wee boy of three weeks who has been diagnosed with Hirschprungs (seems to be where part of the bowel doesn't develop properly and the non-functioning part is removed).

does anyone have any advice about people to speak to, or even just some practical advice about coping with the bag. by all accounts the mum is doing tremendously well, but it sounds like a lot to take in and she could do with some good advice and stories.
thanks for any help you can give

you are QUITE brilliant, pixie, thanks for that.

aitch, feel free to message me. DS was born with HD in 2007... 3 days old when things really started to go downhill.

In fact he is about to celebrate his 4th birthday on monday and today had his friends around for a little party.. a party we thought we would never see 4 years ago .

Please feel free to ask me more and also ask your friend to contact me..

(will post this on both this and the health section in response x)

Hi Shhhh - so happy that your boy is doing well. We found out that our now 5 month old baby boy had HD at around the 3 day old mark too (suspected, confirmed by biopsy a week later) - one hell of a wallop to take emotionally when you've just given birth. I realise that what you've been through is extensive, and so far our HD experience has avoided surgery. I was just wondering if during this time you might have met anyone whose child has a milder form of HD and what their outcome was/is. Any info would be so gratefully appreciated.

Aitch I'm presuming that your friend's baby had to have an emergency pull through op? I hope everything goes well, my heart goes out to them.

ludwig,so your lo hasn't had surgery..? Is it more managable..?

Well ds become very ill at birth, we weren't aware and neither were the mw and he wouldn't feed. BUT they advised me that due to him being 9lb 13oz that he would be fine..

It was on day 3 that (after 3 nights and days of the worse sleep/non rest ever) dh told me while I slept he had googled and was sure ds had x (he didn't have that but guess I was greatful that dh was trying to find an answer..) and that we had to see the mw that morning and that he needed hospital.

The mw saw us at 9am and striaght away admitted us to hospital. Ds tummy was extended and he had projectile vomiting.

Our local hospital had no idea (literally ) and suggested CF . It took the next hospital 3 ish months to finally get that out of my mind and that he didn't have cf..

Well, as ds was so small they had to do 3 rectal biopsys which took us to 5 weeks old when he was finally diagnosed.

Surgery followed days later, problems following the pull through and resulted in a stoma being fitted the following morning .
TBH that was really when I felt I had nothing to live for. It not what you want or expect your baby to have and I saw it as life long.

Again much persuading (sp..) made me realise it was temporary.

Ds had it removed at about 7 months old.

He is now 4 and such a lovely independant child.

In asnwer to your question, did I meet anyone further on that us with HD. Yes I did... as ds had his stoma fitted I sought comfort from a family on the ward who was having their dd's stoma removed (I fpund the hospital reluctant to put you in touch with similar families..I guess confidential.. BUT it was through talking in the kitchen to fellow parents that I found out there was another HD child on the ward..)

Their dd was about 4 and having the stoma removed. Im lucky ds was 7 months when his was removed..

I have had contact since and the little girl at last conversation was doing well. She was alot worse that ds and has had complications. She had long stem HD whereas ds had short stem. Their dd is about 7 now and is like any other little girl. Obviously its different once the home doors are closed..BUT she is doing well.

Im guessing your lo is more similar to ds..?

Oh Shhhh I really, really feel for you. Because only 1 in 5000 kids get this, the moment you leave the larger cities, a lot of hospitals just don't think it could be HD. So they don't realise how very urgent it is to intervene. We were lucky that it got spotted quickly (big teaching hospital, they see 1-2 cases of HD a month apparently) and they thought it was HD from the off - otherwise I think DS would have contracted entercolitis and we would have been in surgery immediately. I do remember the wait for the biopsy though, and being petrified of CF as well. Also, some HD babies do pass meconium don't they? It's only after that the problems set in.

I had midwives insisting DS wasn't feeding coz my latch was all wrong - which it wasn't, coz he was feeding beautifully the first day - and I just knew something was wrong, call it mother's intuition or something. When he still hadn't passed meconium after 48 hours they started to listen to me and called the paediatrician.

At the moment, my lo is managing to poo for himself 2-3 times daily. But then he just stops completely for a few days and we have to do rectal washouts. (Really like an enema, not at all uncomfortable for him.) He musn't go more than 24 hours without that, unless he sorts himself out. We will start weaning him soon and see what happens then.

If surgery happens, we have been advised that it should be - please God - a one off procedure without the stoma stage. The doc has not really told us anything about what happens AFTER the op, I keep googling and finding all sorts of things, dilations etc., but I don't know what to expect because all cases are different.

If you don't mind me asking, how did your little one recover post op? And was potty training any more difficult?

I don't know how you went through those first few months. It's been hard enough for us and we've been bloody lucky so far. You, your husband and DS must have had to be so brave. Thank you so much for posting on here about it, it's made me feel much better and helped a lot just to talk to someone else (other than my family) who know what it's about.

Aitch how is your friend's lo getting on? I'm thinking of them and hoping it all works out.

thanks for answering, ludwig, everyone has been very kind on the other thread as well. i'm going to just suggest that SiL encourages her to post (knowing only too well the difference that MN support can make). i imagine it's a lot to take in at the moment...

hi ludwig,
Thanks for the reply, anything I can do to help just ask .

Well, yes usual cases of HD present with the lo not passing meconium.. ds did pass meconium but we now know it was a small amount and he was able to do so as he had short stem HD.

Till ds had his op at 5 weeks old we would feed him and change many many nappies and would allow the nurses to do rectal washouts. It wasn't something we felt able to do at that time.

Following ds's stoma and after for about 6-12 months we did rectal dialtations. Awful awful thing but something we knew was aiding ds's recovery etc. This also usually allowed him to poo iykwim.

Now, age 4 we do still do washouts . Not routinly BUT whenever ds seems ill as we find any illness ds gets seems to affect his tummy, make it give out bizarre sounds, shapes etc and he shows signs of enterocolitus (lethargic,sickly with/without vomiting etc)

He has been hospitalised on a few occasions with this since op's so we are very vigilant and tbh dh & I are very proud that we seen to be able to spot ds's ill episodes before he shows major signs iykwim.

We usually automatically do a washout. Not ideal on a 4yr old and he is getting to a protectsing stage BUT he knows it makes him better. Honestly, after a washout the change in him is unbelievable. He turns into a bonkers happy little boy .!

Luckily our gp is fab and will prescribe us the relevant antibiotics asap.

Potty training... I remember being petrified of this, mostly as I couldn;t recall what I did with dd (now 5) and I was so worried that ds's history would prevent us making progress.
In fact, the opposite. He was done with ease (ish!). He still poo's more than your average child and its very loose and smelly BUT he has no leakage (geeze I hate that work..) and goes on the toilet iykwim.

The only prob is when he is off colour/ill. He is dry during the day but still in nappies at night. Mainly because of wee and sometimes because of pooing.

I hear that boys in particular can take years to get dry at night and his consultant also suggested that the sensation for a poo/wee is very similar so hence him weeing/pooing at night.

My only worry is him starting school in sept, Im amazed at the stage he is at now as 4 years ago I feared for school but not as bad now... I just worry about him needing the toilet at school as he does need assistance due to the consistancy..

Don't worry about your lo is they need the op.Personally I would opt for it, they are young and easily to manage in hospital and wont recall it. Also after the op (if needed) like you said everyone is different. Take it a step at a time.. and DONT google ! Ask me instead.. please.

btw, post op. Ds seemed to do well.. I recall thinking we would be in there forever and then one day ds had a turn around and improved. We were petrified leaving hospital, like we were loosing our support and even the breathing monitors ds had ! shooks, we felt we had to watch him 24/7!

HTH and sorry it so long .

xx

Gosh I'm so glad I found this thread, thank you for starting it. Hope she finds it helpful.

DS2 has hirshcsprungs too. He also never passed meconium and I couldn't get him interested in feeding. We went to hospital on day 3 because we (and the MW) were getting worried.

They thought he wasn't feeding due to poor supply so I had to pump to prove I had the goods and cup feed him. His tummy started swelling up after that so they did an x ray and spotted that his bowel was swollen & perforated and the last part of it was collapsed (typical Hirschsprungs apparently). We were transferred by ambulance to manchester children's. I feel sick just thinking about that bit...haven't thought about it for a while. It just felt really serious travelling by blue light. I was so petrified that I kept nearly passing out in the ambulance.

He had his perforations repaired, an ileostomy formed and biopsies taken. Huge surgery for a 4 day old but it saved his life. And he has thrived even with the stoma, weight gain/ milestones etc all been fine.

It is a massive punch in the stomach, especially when you have just given birth. I don't know how people cope when it's their first child. I think him being my second made it easier because we were just dealing with a sick child, not the 'what the hell just happened' of having a baby for the first time.

The hirschsprungs was confirmed a couple of weeks later. He had his pull through a month ago at 14wo. They removed quite a bit of his colon (he has long segment hirschsprungs) so we won't have the stoma reversal until the end of march/ beginning of April.

We are going through the dilations business just now. Last one was under GA but next time they are showing me how to do it at home. We've got to get his bum bigger so he can poo out of it! Not looking forwards to it exactly but needs to be done.

I've found the stoma care really difficult at times, mainly when DS has been getting upset, but the thread linked to above has been so, so useful. Things change quite quickly with babies so you need to adapt what you do and which products you use. I would just say to keep asking for help- the only time we got in a mess was when we kept doing something that clearly wasn't working and ended up abandoning bags altogether for a couple of days! But it's all a learning curve and it's just become part of our daily routine now.

Aitch, if your SIL's friend wants to get in touch directly she's very welcome to. I'll PM you my e-mail. I'd be more than happy to meet up too if she's in our neck of the woods (Manchester area).

Shhhh and Ludwig, sorry for what you've both been through. But it really helps to read your stories :)

And, sorry for the longest post EVER but that was really cathartic!

Hello Shhhh and hairymelons. Been so busy of late haven't had a chance to pop onto MN or this thread. Thank you both for your posts - all this info is so helpful, and comforting. Hope both your boys are doing well.

Well, we are seeing the usual consultant in a fortnight. We have also decided to get a second opinion, just to make sure that we check out every option, and will be seeing the other consultant around the same time. Going to start weaning next week and see what happens. I think we'll know where we stand re. surgery in the next month.

I put it out of my head for months but now I think I have to accept that surgery may be on the cards. What kind or how extensive it is remains to be seen..... fingers crossed it will all be ok. My young man is oblivious, thriving, doing great and I am so proud of him.

Aitch let is know how your friend is getting on.

I know this is a zombie thread, but reviving it to ask if any of the original posters are around and can offer advice.
DS, 3 yrs, recently diagnosed with HD, had emergency ileostomy, currently waiting for pull through. I have a few questions:

1. How have your DC been with regards to potty training, long term outcomes, school and such like?
2. Were any of your DC treated at Great Ormond Street?

If you have any general advice, I would be so, so grateful! It's really about thinking ahead for the future and what to expect. I'm very much getting the sense that the medics give us info on a need-to-know basis, and the definition of a great outcome for a patient from the surgeon's pov is quite different from that of the patient/parent pov.

I hope all your DC are doing great post op. it's a tough thing to deal with, especially when it happens at the new born stage.