Taking care of little ones when Mom has Crohns. :(

[islanderaggie]

I've been diagnosed with Crohns since 2007. I was married in 2009 and have two children, ages 2.5 and 7 months. With each pregnancy, I was on several different treatments. Every time, my body built up an immunity. With my last pregnancy, I was on Remicade. It stopped working soon after birth. I was then switched to Humira, which is not as effective but keeps me out of the bathroom more than once a day.

I am a SAHM more for myself than my children. I have been plagued by excessive fatigue that makes it difficult to care for my little ones. We cannot afford daycare without me working. A typical day is as follows: Everybody wakes around 7am and I am very sluggish despite 8-10 hours of sleep. I make breakfast and struggle to stay awake. "Interaction" usually involves lying on my son's bed while he plays in his room or nursing my infant. Around 10am, like clockwork, I am falling asleep on my feet. I place both babies in their respective cribs and crash out on the couch for anywhere from 2-3 hours. I wake up, fetch the babies, feed them lunch and try to play for another few hours. Around 3pm, I am stumbling from fatigue, and I place the babies back down and crash until around 6pm, up, make dinner, husband comes home, takes over childcare and I go to bed around 8pm. I feel like a terrible mother. I spend more time sleeping than being with my children. I have been tested for everything from thyroid malfunction to anemia. My bloodwork shows that I'm fine. Nevertheless, I still take B12, a prescription iron pill, and a multivitamin. I made sure to eat a lot of protein throughout the day. My doctors tried several antidepressants to perk me up...my fatigue overrides all of them. It overrides all "energy" drinks.

On a rare day, I will feel great and full of energy and I actually feel like a mom- playdates, playground, picnics, etc. But I cannot pinpoint what I do differently those days. My mother had this same issue with RA. She slept so much during my childhood and had us teenagers helping with the little ones.

I have received a lot of criticism and accusations of neglecting my children. But I would rather know they are in a safe place during a sleep spell than having me fall asleep randomly and them having free reign of the house, you know? I'm so sick of this disease. It has stolen my life and very likely the chance of more children because I can't handle more. And I have wonderful children! I just have to rely on their self-entertainment and TV so much. I don't know what else I can do for this. I'm in the middle of nowhere in a tiny Texas town. Support groups are 2 hour drives from me. My doctors don't know what's wrong. My husband is ready to drag me to the Mayo Clinc when we can afford it. I don't know what else I can do than just continue this routine until my children are old enough to go to school. :confused2:

 

[Jennifer]

Could be lots of things combined that's causing the fatigue. You said you had your iron and B12 checked but what about everything else (Vit A, D, C, E, magnesium, potassium, zinc etc)? How about your blood sugar? Being low (could still be low middle range but you will feel the effects of a deficiency) or deficient in anything can cause fatigue along with many other problems. More importantly your Crohn's still isn't under control and that's most likely the main factor. Hope you're able to see a doctor that will be able to find the treatment you really need.

My mom was also sleeping a lot when we were kids so I don't have a lot of memories of her from when I was young, just mainly my dad and he wasn't really the best with kids. She doesn't have Crohn's though, was just sick a lot, but honestly I don't think she cared all that much either. That's another story though.

 

[Nansea]

My kids are now teens (18 months apart in age), but I was sick with my IBD throughout their childhood. I also had to work out side of the home because my partner became disabled and nonparticipatory when the youngest was an infant finally moving out when she was 4. I coped with being ill and having a no partner in child rearing by taking advantage of all the opportunities for play groups, the libarary, local gatherings, Once the baby stopped being a cling-on it was very nice to have other adults around who struggled with their own version of life's burden and shared the stressors of raising young children. The extreme fatigue was wicked and I still struggle with that. Vitamins do help, and I have realized that this is how I am and maybe how I will be- I struggle through, try not to take anything sedating like alcohol or narcotics- and to just push through. Some days are better than others but it takes a village- so try to find one and take advantage of it- the local library, community halls, church groups, etc. ((hug))
Remember this too shall pass, as they age their needs will change. The friends I cultivated when they were babies have been their for me and my kids ever since and gotten me (and them) through some of my sickest bouts.