there is HOPE….

Today I got a phone call from an HD Mama from Texas. Her two year old is struggling w/ not pooping. Her GI’s are pushing Miralax. All and all she is having a really tough time, not only w/ the daily STRUGGLES of HD but w/ the emotional component. In talking to her I remembered, vividly, how hard each and every day was. I was working very p/t during everything and I would wait for those days and I would have my breakdowns in the car, by myself while I drove to and from client’s homes. It was such a hard time. Every single irrigation brought hope….”I really cleaned him out,.”, I would say to husband. ” I am SURE this one did the trick, he is going to start pooping on his own.”……most times this wasn’t the case. Occasionally he would start pooping on his own and we would get a few peaceful days of respite. No irrigations, no hearing our son SCREAM for us to stop while we pushed a tube in and out of his bottom for 45-60 min, no cleaning up the inevitable poop all over the bathroom and doing loads and loads of dirty laundry. Those were the days…and then inevitably the poop would stop after a day or two or five and we would start all over again. More irrigations, more hoping for a break, more prayers, more tears, more exhaustion.

I THOUGHT IT WOULD NEVER EVER END.

and then it did……….

and now our son is five and is potty trained. We can go out to dinner w/out having to run home for irrigation. We can go on vacation and he can poop in a public bathroom. We can plan a day out and it does not have to revolve around being home for a second and third irrigation of the day. We still think about and talk about poop every day, but it no longer rules our life.

IT GETS BETTER….. I PROMISE

Please comment….especially your stories of hope. Talking to this Mom today brought tears to my eyes and brought me right back. I know exactly how she is feeling and if we can all send her a little HOPE and some virtual ((((HUGS))))) I am sure it would help.

thanks for reading.

4 Responses

  1. Kristen Ciamaga February 13, 2014 at 6:11 pm | | Reply

    Hello, I am so happy that I found this site, there is no better information out there on any medical website of one coming from Moms and Dads who see their little one deal with this disease first hand. My little guy Jacob who is not 4.5 years old was diagnosed at 2 weeks with Hirschsprungs disease, he spent 2 weeks in the NICU and was sent home with daily irrigations he never once had a poop on his own, we had 2 trips back to the ER with a admittance for a 3 day stat due to colitis. He did not have to have a ostomy, at 3 months they did his pull through surgery. He has yet to have any problems since, no infections to date. Of course when he gets sick or something aggervates his stomach it is far worse for him as you all know than the normal child. My question that I am struggling with is this and I feel no one understands unless you are going through it. He still at 4.5 has accidents, he for the most part does great and will even yell I have to go poop so he can feel it come, however there are times where he has smears in his underwear or I will pick him up from half day preschool and he has a little in his underwear, I will ask him did you feel that coming out? I do not know if it is him being 4.5 years old and being preoccupied with playing or if he is still having “feeling” issues. I know our surgeon who we but Loved it is no long at our children’s hospital said he could still be developing up to the age 6. I do not know what I am going to do about all day kindergarten if he is ready for an all-day school day still having these issues. I would love to hear if anyone this far down the line is still having issues with accidents. Thank you all and I am thankful to no be in this alone!

  2. Jessica Robinson February 17, 2014 at 11:29 pm | | Reply

    Thank you so much for your words of encouragement. My son is almost 16 months old and was diagnosed with Hirschsprungs at just two days old. He has had 4 surgeries so far (and hopefully no more to come)! I have done so much research online regarding this condition and tend to worry about what the future holds for my little guy. It’s good to know that we may not have problems in the future! Thank you again!

    Jessica Robinson

  3. Anam April 3, 2014 at 1:57 pm | | Reply

    Hello my daughter who was born at 35 weeks premature was diagnosed with HD. At 5 days old she underwent stoma surgery and her biopsies were sent to determine the extent of the HD. Then we got the devastating news that it was extensive and that her entire colon and terminal ileum are involved. They plan to do a resection n pull through when she’s a little older. She is 7 weeks old atm. But she’s losing a lot of fluid from her stoma and keeps getting dehydrated again and again and we have to rush her to the ER. She’s in the NICU atm. Its been really hard. She’s not gaining weight due to high loss from her stoma. Doctors are also stumped as to how to maintain her nutrition as TPN for such lil babies isn’t available in our country. I’m very near the edge of losing it and completely breaking down. There’s no one I can talk to who can understand what I’m going through.

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