This was not the post I had intended to write. This morning at around 2:00AM Emma came into our room, her little body burning up. She nestled in between Richard and me. Merlin had curled himself into a tight ball near my head; it is not an exaggeration to say it was a crowded bed. This is the second time since my surgery that Emma’s been up in the middle of the night. What was once a nightly occurrence has, thankfully, become a rarity. By 6:30AM Emma was complaining about the right side of her abdomen hurting. She became more agitated and upset as the minutes ticked by. Richard and I realized we had no choice but to take her to the emergency room.
Once there, Emma seemed less upset and after we answered the thirtieth question about her medical history (for a ten year old, it is lengthy and extensive) went over all her various hospitalizations and the doctors we’ve seen, they decided to take an x-ray to determine if constipation was the cause of her pain. As I stood in the booth with the technician, whose nephew has severe autism and is non-verbal, I could see that constipation was indeed the problem. Not only was there a single enormous blockage, but her intestines were filled with stool.
Once again we were confronted with the question that has plagued us off and on for the last seven plus years. How do you help a constipated child, who refuses to eat little if any of the foods that will help her, see the connection? Or is that not the right question? When the supervising pediatrician came in to speak with us she gave us the same remedies I have been given by countless other doctors and specialists. This isn’t rocket science. It’s pretty basic stuff. But when you’re dealing with a child who has sensory issues, making it difficult for her to know when she feels the need to go to the toilet, along with fear from past painful experiences, add to that dietary limitations and an insistence on eating a dairy heavy diet, even though it’s gotten much, much better, you have a never-ending cycle that is very, very difficult to break.
“Let us be the bad guys. We’ll give her an enema, maybe you or her dad could help hold her down,” the supervisor told us. And as well meaning as she was, as obvious as her suggestion may be, I couldn’t agree to it. Having Emma held down by three or even four strangers while a bottle of saline solution is pumped into her, while she screams and fights is not going to solve the bigger issue, the issue that we have been dealing with for the last seven years with varying degrees of success – constipation.
“I know,” the doctor said, in response to my despair that we were once again being told the same thing we’ve been told by literally DOZENS of doctors. “I’m sure it’s very frustrating.”
“Actually frustrating doesn’t begin to cover it,” I said.
And it doesn’t. Frustration is the beginning of a great many feelings when you are forced to watch your child writhe in pain from something that is so heinous and frightening. Having just had surgery, having, for the first time had to personally experience the hell that sums up constipation, the pain, the fear, reminding myself to breathe into the pain and relax, I can relate to what Emma is going through in a way I never could have before. So I did the only thing I know to do. “Come on Em. Let’s go to the bathroom, I’ll stay with you, and then afterward we can go home.”
Emma took my hand and together we went into the bathroom where she sat with me crouched in front of her, just as I used to do every single day for so many years. This time I looked into her eyes and said in a calm, gentle voice, “I’m here with you Emma. I’m going to stay here with you. You can do this.”
“I know, it hurts to poop,” Emma cried.
“Yes. It does. I know.”
Finally she was able to let go of at least some of the stool inside her and after another 30 minutes, we left and came home. It’s not over, she’s still massively constipated, shes’ still uncomfortable. We will have to insist she not eat as much dairy. We will have to be more diligent about monitoring her. We have no easy answers. We have no quick fixes. But we will get through the rest of the day, just this one day, one day, one step at a time.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Ariane, while some might wonder why you are posting about such an unlovely topic, I am completely sympathetic and I know how important these digestive issues can be. There is absolutely no question (as you know) that neurological disorders affect the digestive system, for a seeming variety of reasons ranging from intestinal motion to digestive abilities. After I came down with M.S. I started having terrible issues with constipation — something I had never suffered from before! It indeed can be terribly painful and life-disrupting, not to mention bad for one’s health overall. And my father, who developed M.S. late in life, the sicker he got with M.S., the worse the constipation became, until it was truly one of the worst symptoms he had, according to him — and this for a man who could no longer sit up in a chair without support/restraints, and no longer walk or feed himself or read. Constipation is just devastating and horrible and painful (and humiliating). I know you have tried various diets and things. I wonder if you have ever tried simple things like pumpkin puree? Pumpkin is something we’d use for constipation in dogs (no offense!) and I find it helpful for me; it is very high in fiber. You can make it totally yummy to eat, whether pureed, or put into baked goods. You can buy it canned or make it fresh. (Maybe make pumpkin pie with rice milk?) Also, beets are another awesome thing for constipation. They can also be made yummy, though not as yummy as pumpkin. What if Emma had beets or pumpkin in some form in her diet every day? Red beet soup — with a dollop of faux yoghurt in it: I have recently discovered coconut milk yoghurt and almond milk yoghurt, both yummy and good replacements for dairy (which I can no longer touch, ever since the M.S.) The coconut one comes in chocolate flavor! And fruit flavors! And vanilla! Finally, I wonder what your doctors would think of maybe trying magnesium citrate oral solution to drink (it comes in lemon flavor) for those times like this when things are just TOTALLY blocked up and can’t move; it is what they give people to drink to clean them out before colonoscopies, and it is available over the counter in any drug store. This would be for “emergencies” to try to avoid going to the ER. I really hope you are both recovering okay now.
Actually people have been sending me all kinds of emails with various remedies that have worked for them, it’s been a kind of outpouring of information. Clearly constipation is an issue many, many people must contend with. Who knew? We have given Emma Miralax, something that was recommended years ago, but did nothing other than soil her underwear. But this time, perhaps because she is more aware now, it does seem to be helping. We are also cutting back her dairy intake dramatically. I love the pumpkin suggestion, Emma won’t touch pumpkin, but who knows, she may one day. I also made a wonderful prune compote, again she refuses to eat more than a taste, but who knows, she may one day like it. The prune (why aren’t they called dried plums? A much nicer sounding name.) muffins I made were delicious, but again she refused to eat more than a nibble. Still it’s better than nothing, so I will keep trying different things and have loved getting all the suggestions, so thank you. I also have since read more about and thought more about the “autism” and bowel connection. Emma has delayed fine motor skills, why wouldn’t she have delayed internal motor issues as well? It does make sense and I read with interest and compassion about your own experience of MS and constipation. Talk about adding insult to injury! Thanks for reaching out Louise and for all your continued support on facebook. XX
I know you’ve gotten A LOT of info thrown at you but I had to say that I’ve been there and it is THE hardest thing I have ever dealt with in life. I’ve told you about my son Brett and his autism but it was actually my daughter that I had this issue with and she is neurotypical. She proclaimed at age 3 that she was no longer pooping because she got constipated and it hurt and BOY OH BOY did she try to live up to that statement! For over 5 years we dealt with the issue of not pooping regularly etc….It was a nightmare. So many nights I cried and cried just not knowing what to do….soiled undies, trips to er’s, psychologists etc….the only thing that worked in the end for HER was doing regular enemas. I think it was a combo of her hating them (it was brutal for us all to go thru and trust me..a final effort) it helped her finally begin to recognize when she needed to go) Little by little she got in the habit and her system got stronger. Now I know none of this may work for Emma. I just wanted you to know you aren’t alone in your battle. It is so hard to go thru. Big hugs to you all and remember you are a great mom, trying all you can to help your little girl! She is so blessed to have such awesome parents!! B~
It’s so interesting that you write this Becky as this is exactly what we did with Emma so many years ago. Little by little we reduced the amount of solution we were giving her in the enema and after a few months she no longer needed it. She learned to go on her own, which was why this was such a shock when the doctors told us she was constipated. Since then, Emma is back to being regulated, goes on her own without any prompting from us. Until you wrote, I hadn’t heard of anyone doing this with their child. For us it was the only thing that worked. As Emma is now much older, giving her an enema is an all out war, one we have, thankfully avoided. Thanks for reaching out Becky. Always good to hear from you.
Oh I know about those wars too!! :O) Lordy it is difficult! Brett will NOT take any meds orally! NONE! We have tried it all. So, he requires suppositories or shots. Both of which involve a battle! I can totally relate to that! 🙂 I will pray that Emma can continue to regulate things on her own. Erin will still require an occassional reminder as to what will happen if she doesn’t go for a few days! 🙂 What a topic, huh!! LOL! What we don’t do for our kiddos! Blessings! B~
Em never took medicine orally until she was around eight and she had strep for the second time during the winter months. We had to give her a shot of antibiotics and I think it was so unpleasant she made the connection that if she just drank the medicine she wouldn’t have to have the shot. Now she takes pretty much anything. I know, we are sooo lucky. But reading your comment here reminded me how awful it was when she refused. Gratitude, nothing like a little gratitude!