It seems like a really long 20 years but I can sum it up in a few short sentences. First saw bleeding at the age of 12, asacol and prednisone used to control it, they couldn't help me after my daughter was born. Three hospitalizations in two years, iv nutrition, three picc lines, I'm starting to lose count of my colonoscopies... on the bright side I've found my favorite prep (moviprep). So far I've avoided surgery and started on Remicade June 2010. It gave me a great year then I flared in June of this year. Prednisone again and they increased my dose of Remicade from 5 mgs/kg every 8 weeks to 10 mgs/kg every 8 weeks. It seems to be working for now, I still have urgency a few times a day but can travel and live life normally at the moment. And I can eat. I love eating. I mostly stay away from red meat, alcohol, and some dairy. Besides the disease, I'm a wife, a stay-at-home mom, proud mutt owner and live in the northernmost city in the US, Fairbanks, Alaska. Speaking of which I just started taking 5000 IUs of Vitamin D daily; it seems to be helping. We want to have more children but are understandably nervous as I flared very seriously after my daughter. Also I would be on Remicade for the first two trimesters of a pregnancy. We would like to do it before any future surgeries make things more complicated. I'm also looking for a local support group or disease therapy of some kind to help with my disease nightmares and ptsd symptoms. I'm very happy to find this forum and have a community to talk to!
New to Forum, First Symptoms 20 Years Ago
- Thread starter Sheila G.
- Start date
Help Support Crohn's Disease Forum:
xJillx
Your Story Forum Monitor
- Joined
- Jan 7, 2011
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Hi Sheila and welcome! I am glad to hear the increased dose of Remicade seems to be working fairly well. I hope it continues to do so.
I can understand your nervousness to have another child being that you flared so badly after having your daughter. Did you stop your treatment during and/or after pregnancy? I have discussed this topic (flaring after having a baby) with my GI as it seems common, and she said it is usually due to the fact that women stop treatment. However, I am curious about hormonal changes being a factor. I have read that breastfeeding can help level out the hormones after giving birth and help prevent a flare. Just a thought.
I wish you luck and I hope you can expand your family soon!
I can understand your nervousness to have another child being that you flared so badly after having your daughter. Did you stop your treatment during and/or after pregnancy? I have discussed this topic (flaring after having a baby) with my GI as it seems common, and she said it is usually due to the fact that women stop treatment. However, I am curious about hormonal changes being a factor. I have read that breastfeeding can help level out the hormones after giving birth and help prevent a flare. Just a thought.
I wish you luck and I hope you can expand your family soon!
David
Co-Founder
Hi Sheila and welcome! I'm so glad you joined and hope you become a regular here 
You mentioned you started vitamin D recently. What made you start and what symptoms has it helped with?
I wish you nothing but the best!
You mentioned you started vitamin D recently. What made you start and what symptoms has it helped with?
I wish you nothing but the best!
Thanks everyone for the welcome. I'm really glad to have found this as where I live there are no local support groups for IBD specifically.
@amssgirl - Thanks for the welcome. I really appreciate what you said. It made me feel like maybe I could help other people through this which I never have really thought, so thank you for that perspective.
@ Jill - Yes I really hope the remicade keeps working for me. During my pregnancy I was supposed to be taking asacol but I felt the best I had ever felt and in my naivety I thought I was just going to be better forever, so I was taking them intermittently. After my daughter was born, I was dealing with very little sleep, poor nutrition, stress, and also took an antibiotic for a bladder infection. Combined I think it was the perfect storm for a flare. Before my daughter my flare symptoms were mostly blood, mucus, gas, urgency. Afterwards it manifested in diarrhea so I didn't realize what was happening until it was too late. By the time I got on prednisone I was already running to the toilet 20 x a day and breastfeeding as well. Because I was breastfeeding I was hesitant to go full-bore on the steroids so I told my doctor I'd rather start at 20 mgs but that dose didn't help. Then when we increased it, it's like my system had adjusted to the 20 so the higher doses didn't shock my system the way it was supposed to. Also I was having so much diarrhea the meds might have been just going in and out immediately. I was seeing the asacol in the toilet so I knew I wasn't absorbing those.. long story short, 8 months after my daughter's birth and 80 lbs lost to chron's, I gave up breastfeeding and went into the hospital for the first time. In hindsight there is a lot I would do differently. This time around I would be on remicade so hopefully I would stay well throughout the pregnancy and get through the hormone fluctuations after the pregnancy without flaring. Thanks for the good wishes and I will keep the forum posted if we decide to move ahead!
@David - Yes I had been taking a cal-mag with vit. D supplement and an additional 800 ui/daily but after research and talking to a friend who lives in Canada I decided to increase to 5000 uis/daily. My friend told me that when she lived up here in Alaska, she was taking 10,000 a day in the winter to help with seasonal affective disorder. For me the reasons are to combat stress and depression and give myself the best chance of not getting colon cancer. I've also recently been experiencing some PTSD symptoms that are related to the disease (nightmares about the disease, panic attacks, etc.) so I figured anything that could help with that would be well worth it. It seems to be helping me feel less stressed, I've been less depressed since starting it, even though it's only getting darker here day by day, right now we only have a few hours of daylight. It might be a placebo effect but that's fine as long as it helps! Thanks for the good wishes.
@amssgirl - Thanks for the welcome. I really appreciate what you said. It made me feel like maybe I could help other people through this which I never have really thought, so thank you for that perspective.
@ Jill - Yes I really hope the remicade keeps working for me. During my pregnancy I was supposed to be taking asacol but I felt the best I had ever felt and in my naivety I thought I was just going to be better forever, so I was taking them intermittently. After my daughter was born, I was dealing with very little sleep, poor nutrition, stress, and also took an antibiotic for a bladder infection. Combined I think it was the perfect storm for a flare. Before my daughter my flare symptoms were mostly blood, mucus, gas, urgency. Afterwards it manifested in diarrhea so I didn't realize what was happening until it was too late. By the time I got on prednisone I was already running to the toilet 20 x a day and breastfeeding as well. Because I was breastfeeding I was hesitant to go full-bore on the steroids so I told my doctor I'd rather start at 20 mgs but that dose didn't help. Then when we increased it, it's like my system had adjusted to the 20 so the higher doses didn't shock my system the way it was supposed to. Also I was having so much diarrhea the meds might have been just going in and out immediately. I was seeing the asacol in the toilet so I knew I wasn't absorbing those.. long story short, 8 months after my daughter's birth and 80 lbs lost to chron's, I gave up breastfeeding and went into the hospital for the first time. In hindsight there is a lot I would do differently. This time around I would be on remicade so hopefully I would stay well throughout the pregnancy and get through the hormone fluctuations after the pregnancy without flaring. Thanks for the good wishes and I will keep the forum posted if we decide to move ahead!
@David - Yes I had been taking a cal-mag with vit. D supplement and an additional 800 ui/daily but after research and talking to a friend who lives in Canada I decided to increase to 5000 uis/daily. My friend told me that when she lived up here in Alaska, she was taking 10,000 a day in the winter to help with seasonal affective disorder. For me the reasons are to combat stress and depression and give myself the best chance of not getting colon cancer. I've also recently been experiencing some PTSD symptoms that are related to the disease (nightmares about the disease, panic attacks, etc.) so I figured anything that could help with that would be well worth it. It seems to be helping me feel less stressed, I've been less depressed since starting it, even though it's only getting darker here day by day, right now we only have a few hours of daylight. It might be a placebo effect but that's fine as long as it helps! Thanks for the good wishes.
