Category: My journey

It has been over four months since I last blogged about my daughter and her sudden illness. I think it’s time for an update.

When we last left off, we were a month into the hell that was her post infection irritable bowel syndrome. Before this happened to her, when I would hear ‘IBS’ I would picture someone with a stomach ache. I did not know just how bad it could get. You cannot know until you are living in the middle of it.

She lived in pain all the time. We had a scale we would refer to – “What’s your pain on a 1 – 10?” Ten being the worst. We never went below a five. Five we considered ‘good enough & manageable’ even though she would still audibly moan out loud.  Seven to eight was gut pain mixed with hunger, how ironic. Nine to ten, that was after meals or in the middle of the night, the worst.  From the time she woke up until she went to bed (and when I say ‘went to bed’ I rarely mean ‘sleep’ since her pain would keep her from sleeping) and even when she did sleep, she would thrash about moaning in pain. It was at different levels throughout the day.  She would wake up moaning. And her pain would elevate after every meal. Her belly would puff out as if she were pregnant, horrible noises would start up from her midsection, and her howling would ramp up. We were at a loss for what to do. She didn’t attend school for two months. She lost weight. She looked horrible.  We would end our day working to get out of her intestines what we worked hard to get into her. It got ugly. You don’t need more details than that to get the idea.

We spent time at Children’s Hospital in Boston, and we saw a doctor in the children’s GI department at Mass General. The conclusion was all the same – whatever happened had left her with a damaged small intestine, and that we needed to work with the pain management team to teach her how to live on a daily basis in pain. Yes, she is in pain, but ‘the pain won’t hurt her further, it just exists’.  Her pain is considered ‘functional’-  characterized by chronic pain, with no physical explanation or findings – no structural or mechanical causes can be found. Try and comprehend that – she needs to learn how to live her daily ‘normal’ life around her pain. This is her life now? Daily pain? I would go out to my car to cry. I would scream. I would call my mom and we would cry and scream together.  Then I would pull my shit together and go back inside. I think I cried twice in front of my daughter. She couldn’t bear it. She said “As long as I don’t see you cry, I still believe I will someday get better. I lose hope when I see you cry”.

She did have an endoscopy that ruled out celiacs disease, ulcers, or other possible stomach issues. She was tested for parasites, twice – negative. We also looked into a small intestine bacteria overgrowth – SIBO. While her tests for that came back negative (and she didn’t respond to serious antibiotics for it like Flagyl or Rifaximin – a jaw dropping $440 with insurance for a two week course!) her symptoms closely linked to that of SIBO. Constant GI distress that elevated after eating, especially when eating more complex carbs or sugars.

She had to start seeing a pediatric pain psychologist on a regular basis. She learned how to breathe into her pain, to visualize positive thoughts to minimize the pain. She went to acupuncture offered at Children’s Hospital. She got a TENS unit to wear around her waist. It

TENS Unit

is a bit bigger than a box of cigarettes with ‘leads’ that attach to the area of discomfort. It administers electrical nerve stimulation that is supposed to  minimize the pain. For the record, she didn’t find it helpful at all, though many people do. I even tried it on my lower back since I have back pain. (Her physical therapist said I could use it as well.) I didn’t like it either. They emphasized ‘distraction’ as a method of pain control, and we knew that to be our best option. When she was busy, she could retrain her focus. The worst was at night when the lights went out and there were no distractions. Most of the time she would try to sleep, but she couldn’t, so I would get up with her and we would watch television. There was always a repeat of America’s Funniest Home videos, and we could laugh out loud at it. I would scour the net for information about her condition during those all night marathon tv/reading/iPod/computer time sessions.

I asked the GI doctors at Children’s Hospital what I should feed her, since it seemed as though every thing she ate just brought on more pain. One doctor had suggested a FODMAP diet. It is a list of foods to avoid that can cause more gas & distention in the small intestine, resulting in more pain. You avoid foods high on the list – which are usually more complicated carbs – and opt for the lower, easier to digest carbs. I gave it a good try but found it ineffective for us. It isn’t that it’s such a tough diet to follow, but if you are a picky eater to begin with, as she was – it can be a challenge.  When we met with the pain management team, I brought up the whole food issue with the head doctor and how we were trying the FODMAP diet.  He waved his hand dismissively and said “It is too difficult to try and follow any specific diet. Just feed her what she wants so she will feel like a normal ten year old.”

What?! My daughter moans in pain all day long. When I feed her something that is supposedly less stressful on her gut, like on the FODMAP list, she still deals with pain, clutching her belly as it bloats, howling out like an animal. If I feed her what she wants, her ‘normal’ diet – I have watched her pain elevate to a point where she is standing up, fists clenched and screaming through clenched teeth. For hours. You have got to be joking – feed her what she wants so she feels normal? Normal is NOT missing over two months of school, losing weight, being in pain all the time.

So…what do I feed her? She was losing weight, and she didn’t have weight to lose in the first place. I was getting alarmed at how thin she would look when I would see her getting into the bath…

Coming up…part two of ‘My Daughter’s Recovery”.