Hello everyone. I am a single mother of a child with Crohn's, and it can be so scary! I know you've all had to deal with it personally, and I have not. However, watching the person most precious to you deal and cope and try to endure it is miserable for a mother! I joined tonight because she's starting to get another flare up, and I need to know how to be the best mom I can be for her.
Let me go back to 2003. My daughter was 4 months old, and I was breastfeeding her. My (now ex-) husband and I were with his family on a beach vacation, staying in a condo together. There was a loud argument, as usual with his father, and I insisted on taking her away from the negativity. When I got her upstairs and started to change her diaper, I noticed a bloody mucus plug. I was extremely worried, to say the least, but everyone told me that it was probably nothing, and that I had ppd (which was true, but did not negate the severity of the situation). I took her home to our family doctor immediately.
They did so many tests. Allergies to milk proteins, (I went off all dairy, including whey and curds WHICH ARE IN EVERYTHING PROCESSED!) flex sigmoidoscopy (they made me hold my baby down while they stuck her all over looking for a vein for IV!! It traumatized us both), lactose intolerance, formulas (in case it was my breast milk - it wasn't), and more. I called her my little miracle healer baby because she just stopped bleeding one day. We never found an answer to it, but we were happy because she was back to normal. I breast fed her until she was 11 months old, then switched her over to soymilk and regular milk after the 1 year mark.
Time passed and my husband and I separated, and eventually divorced. I was to move overseas, and take her with me. The plan was that I'd go for 1 month in advance, then he'd come and bring her to me, after I'd gotten the place squared away and the car and job secured. However, in the weeks leading up to this, she began to squat in the floor holding her tummy, and rock. I'd ask if she needed to go to the potty and fear would strike across her face. She always said no, but I knew she'd been holding it in. I assumed the cramping was due to this. See, she started holding it in when she was blocked one time. The pain of passing the GIANT stool that she finally passed tore her little bottom and she bled and cried. There were times we had to hold her down and give her enemas and she screamed and kicked as hard as she could. I felt absolutely vile about it, like we were violating her, which obviously wasn't the intent, though the trauma was the same.
I took her to the GI, and at the same time, the orthopedist. See, one morning she came crawling out of her bedroom with her stuffed animals under her chin. I told her she wasn't a baby, and to get up and walk. She said she couldn't, that her ankle hurt. When I asked and she told me she'd done nothing to it, I checked it for signs of bruising or sprain. There was nothing. I helped her up and told her to walk it off. I had her do some ankle exercises (I am queen of sprained ankles, so I know them by heart!) and even iced it and gave her anti-inflammatory meds. Nothing worked, so, we were going to the orthopedist in addition to the GI.
The GI wanted to do a colonoscopy and suspected polyps. We collected stool sample after increasingly-painful stool sample. They were getting larger, too... bigger than a soup can, then bigger than a 1 liter bottle, until eventually, she was screaming and crying on the toilet and begging me not to make her go. Many times, I would let her sit in a bath of warm water and play until she would pass it, but it was never without tears. I was freaking out and no one seemed to understand the gravity of the situation!!
Luckily, the orthopedist referred her to Children's Hospital in Cincinnati, as they could find nothing wrong with her ankle, and she'd been in an air cast for about 8 weeks. What I couldn't really comprehend was that my daughter looked more and more like a Holocaust victim everyday. Her bones jutted out in harsh angles, her eyes sunk in, and you could count every bone in her spine. She often refused to eat, no matter how hungry she felt, because she knew it would cause her stomach cramping and vomiting. She had dropped from 66 pounds to 42. My little 6 year old was starving in front of me!!!
Now, I mentioned it was lucky that the orthopedist referred her to Cinci, that's because she had another stomach cramp during the visit, and crouched low, rocking back and forth. "Does this happen often??" they asked. "Multiple times a day. The GI doesn't know why..." and they quickly set about taking blood samples and investigating every angle. "Have you ever heard of Crohn's disease?"...
It was awful and a god send all at the same time!! We hated to hear that our daughter had this disease, but at the same time, now we had a game plan for fighting it, getting it under control!! Steroids and diet and Mercaptopurine... finally, we got her into a remission stage!! She was able to take the boot off her ankle and walk and run and play again! The cramping became less and less, until she stopped altogether! We closely monitored her diet, and more importantly, began teaching her what she could and could not eat.
I am so grateful to the doctors that helped us! We had a routine check in September, and they upped her dosage, as her weight had gone up. However, I'm afraid we were a little too celebratory. We began allowing her small amounts of seeds and nuts again... occasional yeast rolls (she loves them!!)... strawberries and blueberries again... and now... I've lost my job. The reason I even bring that up is that she's a worrier. I hid it from her for a while, but she eventually realized that I'm unemployed and she began worrying. She also just recently got over the cold/flu that was going around, and it set up (as usual) in her chest as bronchitis. With a Z-pack she kicked it pretty well, but now, she's having a flare up. I don't know if it's the worry, the diet, the illness, or a combination of all, but I know we have to get it under control NOW!!
I joined this forum because I want my daughter to grow up happy, healthy, and able to do all the things normal kids do. She's afraid of sports, because "What if I hurt my joints?" (I've suggested swimming, and she's intrigued) and she's already getting body image issues at age 9 ("My new years resolution is to eat healthier, mommy, because ever since my steroids when I was 6, I've felt a little chubby" - What!? She isn't even close to the obese marker!).
I've started with the diet (as I've been trying to get a job since November!) but she's had to stay home from school a few days already, and of course will continue her meds, but honestly gang... I just need someone to understand and give me pointers. I don't want her having to go through a surgery this young, if ever! I know many of you have, and my heart goes out to you.
Thanks so much for reading/listening.
-a scared & tired mom, who will never, ever quit fighting for her daughter
Let me go back to 2003. My daughter was 4 months old, and I was breastfeeding her. My (now ex-) husband and I were with his family on a beach vacation, staying in a condo together. There was a loud argument, as usual with his father, and I insisted on taking her away from the negativity. When I got her upstairs and started to change her diaper, I noticed a bloody mucus plug. I was extremely worried, to say the least, but everyone told me that it was probably nothing, and that I had ppd (which was true, but did not negate the severity of the situation). I took her home to our family doctor immediately.
They did so many tests. Allergies to milk proteins, (I went off all dairy, including whey and curds WHICH ARE IN EVERYTHING PROCESSED!) flex sigmoidoscopy (they made me hold my baby down while they stuck her all over looking for a vein for IV!! It traumatized us both), lactose intolerance, formulas (in case it was my breast milk - it wasn't), and more. I called her my little miracle healer baby because she just stopped bleeding one day. We never found an answer to it, but we were happy because she was back to normal. I breast fed her until she was 11 months old, then switched her over to soymilk and regular milk after the 1 year mark.
Time passed and my husband and I separated, and eventually divorced. I was to move overseas, and take her with me. The plan was that I'd go for 1 month in advance, then he'd come and bring her to me, after I'd gotten the place squared away and the car and job secured. However, in the weeks leading up to this, she began to squat in the floor holding her tummy, and rock. I'd ask if she needed to go to the potty and fear would strike across her face. She always said no, but I knew she'd been holding it in. I assumed the cramping was due to this. See, she started holding it in when she was blocked one time. The pain of passing the GIANT stool that she finally passed tore her little bottom and she bled and cried. There were times we had to hold her down and give her enemas and she screamed and kicked as hard as she could. I felt absolutely vile about it, like we were violating her, which obviously wasn't the intent, though the trauma was the same.
I took her to the GI, and at the same time, the orthopedist. See, one morning she came crawling out of her bedroom with her stuffed animals under her chin. I told her she wasn't a baby, and to get up and walk. She said she couldn't, that her ankle hurt. When I asked and she told me she'd done nothing to it, I checked it for signs of bruising or sprain. There was nothing. I helped her up and told her to walk it off. I had her do some ankle exercises (I am queen of sprained ankles, so I know them by heart!) and even iced it and gave her anti-inflammatory meds. Nothing worked, so, we were going to the orthopedist in addition to the GI.
The GI wanted to do a colonoscopy and suspected polyps. We collected stool sample after increasingly-painful stool sample. They were getting larger, too... bigger than a soup can, then bigger than a 1 liter bottle, until eventually, she was screaming and crying on the toilet and begging me not to make her go. Many times, I would let her sit in a bath of warm water and play until she would pass it, but it was never without tears. I was freaking out and no one seemed to understand the gravity of the situation!!
Luckily, the orthopedist referred her to Children's Hospital in Cincinnati, as they could find nothing wrong with her ankle, and she'd been in an air cast for about 8 weeks. What I couldn't really comprehend was that my daughter looked more and more like a Holocaust victim everyday. Her bones jutted out in harsh angles, her eyes sunk in, and you could count every bone in her spine. She often refused to eat, no matter how hungry she felt, because she knew it would cause her stomach cramping and vomiting. She had dropped from 66 pounds to 42. My little 6 year old was starving in front of me!!!
Now, I mentioned it was lucky that the orthopedist referred her to Cinci, that's because she had another stomach cramp during the visit, and crouched low, rocking back and forth. "Does this happen often??" they asked. "Multiple times a day. The GI doesn't know why..." and they quickly set about taking blood samples and investigating every angle. "Have you ever heard of Crohn's disease?"...
It was awful and a god send all at the same time!! We hated to hear that our daughter had this disease, but at the same time, now we had a game plan for fighting it, getting it under control!! Steroids and diet and Mercaptopurine... finally, we got her into a remission stage!! She was able to take the boot off her ankle and walk and run and play again! The cramping became less and less, until she stopped altogether! We closely monitored her diet, and more importantly, began teaching her what she could and could not eat.
I am so grateful to the doctors that helped us! We had a routine check in September, and they upped her dosage, as her weight had gone up. However, I'm afraid we were a little too celebratory. We began allowing her small amounts of seeds and nuts again... occasional yeast rolls (she loves them!!)... strawberries and blueberries again... and now... I've lost my job. The reason I even bring that up is that she's a worrier. I hid it from her for a while, but she eventually realized that I'm unemployed and she began worrying. She also just recently got over the cold/flu that was going around, and it set up (as usual) in her chest as bronchitis. With a Z-pack she kicked it pretty well, but now, she's having a flare up. I don't know if it's the worry, the diet, the illness, or a combination of all, but I know we have to get it under control NOW!!
I joined this forum because I want my daughter to grow up happy, healthy, and able to do all the things normal kids do. She's afraid of sports, because "What if I hurt my joints?" (I've suggested swimming, and she's intrigued) and she's already getting body image issues at age 9 ("My new years resolution is to eat healthier, mommy, because ever since my steroids when I was 6, I've felt a little chubby" - What!? She isn't even close to the obese marker!).
I've started with the diet (as I've been trying to get a job since November!) but she's had to stay home from school a few days already, and of course will continue her meds, but honestly gang... I just need someone to understand and give me pointers. I don't want her having to go through a surgery this young, if ever! I know many of you have, and my heart goes out to you.
Thanks so much for reading/listening.
-a scared & tired mom, who will never, ever quit fighting for her daughter
