Most on here are aware of my Daughters Crohn's journey which started for her at age 13. She's now 31, and been doing quite well Crohn's wise. Been on Stelara for about 2 years now.
She's engaged to a wonderful guy, and they live together in a home they built. She recently got pregnant. Unfortunately, lost the baby at about 4-5 weeks, (miscarriage).
After numerous Doctor visits, they have determined that her iron being so low may have been a serious factor. She's going for an infusion, and going to be monitored going forward.
If anyone can shed some light it would be great. She's pretty depressed about this whole ordeal, but we're trying to stay positive.
Tom, so very sorry to read this post. It is sad when this happens. It will take time with the iron infusions to get her iron levels built back up. Perhaps later on they will try again, hopefully they will not give up.
Again, so sorry this happened.
Susie
Moderator in Chronic Pain & Psoriasis Forums
Again, so sorry this happened.
Susie
Moderator in Chronic Pain & Psoriasis Forums
Thanks so much Susie,
Hope I didn't give the wrong impression with my post. Sad news indeed, but staying positive going forward. She's really looking forward to Motherhood, so definitely wondering if anyone has faced issues with pregnancy and Crohn's related issues. Really appreciate your kind words of course.
Tom.
Hope I didn't give the wrong impression with my post. Sad news indeed, but staying positive going forward. She's really looking forward to Motherhood, so definitely wondering if anyone has faced issues with pregnancy and Crohn's related issues. Really appreciate your kind words of course.
Tom.
😥 sorry for you all.
Hi Tom,
I haven't posted here in a long time but I remember you and your kind devotion to your daughter. I am so sorry for your loss and hope your daughter and her partner are doing ok. I was diagnosed with Crohn's in my late 40's after I had my kids, but I may have had undiagnosed Crohn's long before that. My husband and I went through 6 years of infertility treatments and then I miscarried my first pregnancy. It was so devastating for me, as I wanted to be a mom more than anything in the world! I ended out having two more children, a boy, who is now 36 and a 32 year old daughter. When I was pregnant with my daughter, I was very anemic and had a placental abruption and had to be on bedrest for 10 weeks, but she was born healthy. I'm 66 years old now, but looking back on it, I suspect that my autoimmune/Crohn's issues may have impacted my pregnancy issues but I don't really know that for sure. They are so much more advanced with both high risk pregnancy care and Crohn's treatment than when I was young. Please tell your daughter to take all the time she needs to grieve this loss and to be kind to herself. I hope she can go on and have a wonderful family, in whatever form that takes. It might be good for her to try to be followed by a high risk OB who coordinates care with her GI for the next pregnancy. I wish you all the best. It was a long journey for me to become a parent, but I have felt grateful to have them in the world every day since they have been born, and they know how much they are loved.
I haven't posted here in a long time but I remember you and your kind devotion to your daughter. I am so sorry for your loss and hope your daughter and her partner are doing ok. I was diagnosed with Crohn's in my late 40's after I had my kids, but I may have had undiagnosed Crohn's long before that. My husband and I went through 6 years of infertility treatments and then I miscarried my first pregnancy. It was so devastating for me, as I wanted to be a mom more than anything in the world! I ended out having two more children, a boy, who is now 36 and a 32 year old daughter. When I was pregnant with my daughter, I was very anemic and had a placental abruption and had to be on bedrest for 10 weeks, but she was born healthy. I'm 66 years old now, but looking back on it, I suspect that my autoimmune/Crohn's issues may have impacted my pregnancy issues but I don't really know that for sure. They are so much more advanced with both high risk pregnancy care and Crohn's treatment than when I was young. Please tell your daughter to take all the time she needs to grieve this loss and to be kind to herself. I hope she can go on and have a wonderful family, in whatever form that takes. It might be good for her to try to be followed by a high risk OB who coordinates care with her GI for the next pregnancy. I wish you all the best. It was a long journey for me to become a parent, but I have felt grateful to have them in the world every day since they have been born, and they know how much they are loved.
Hi Gumby,
I'm sure I remember you as well. Thank-You so much for your kind words, and for relating your story and what you endured. It's inspiring to know that you were able to have two healthy children while having similar issues as my Daughter. Although, I can't imagine 10 weeks of bedrest.
I'll pass this on to her. She is now seeing other Doctors that are addressing her issues regarding the effects of low iron and now also very low vitamin D.
Hopefully in time she'll end up with the same success that you've had. Wishing you all the best.
Tom.
I'm sure I remember you as well. Thank-You so much for your kind words, and for relating your story and what you endured. It's inspiring to know that you were able to have two healthy children while having similar issues as my Daughter. Although, I can't imagine 10 weeks of bedrest.
I'll pass this on to her. She is now seeing other Doctors that are addressing her issues regarding the effects of low iron and now also very low vitamin D.
Hopefully in time she'll end up with the same success that you've had. Wishing you all the best.
Tom.
Hi, Tom:
Sorry to hear that. I am surprised that her doctor has not been monitoring her red blood count since she has Crohn's. I recall you live in Canada, where healthcare is free. If your daughter had low iron anemia, a simple 5-minute CBC would have revealed low hemoglobin years ago. Has she also tested her Vitamin D and Calcium level? I also had low iron anemia and got two iron infusions 2 years ago. I then suffered from severe iron infusion induced hypophosphatemia. Not everyone will get what I got. So now I am taking iron pills. In January 2024, you posted that your daughter went on a vegetable based iron supplement and had to resort to infusions on a few occasions. So she knew she had iron issue over a year ago.
Sorry to hear that. I am surprised that her doctor has not been monitoring her red blood count since she has Crohn's. I recall you live in Canada, where healthcare is free. If your daughter had low iron anemia, a simple 5-minute CBC would have revealed low hemoglobin years ago. Has she also tested her Vitamin D and Calcium level? I also had low iron anemia and got two iron infusions 2 years ago. I then suffered from severe iron infusion induced hypophosphatemia. Not everyone will get what I got. So now I am taking iron pills. In January 2024, you posted that your daughter went on a vegetable based iron supplement and had to resort to infusions on a few occasions. So she knew she had iron issue over a year ago.
Hey Paul,
Thanks for posting. I'm slowly learning more about pregnancy and Crohn's. As a Father, I think I'm still on the fringe with understanding it all. You're absolutely right in that my Daughter has been plagued with low iron in the past. Ironically, the veg. based iron did raise her iron somewhat, and I don't really remember why she stopped it. Might have been complacency. Iron pills always gave her severe constipation.
Since there's quite a lot of blood required during pregnancy, and also a significant loss of blood from a miscarriage, this might account for her current anemic state.
Her Vitamin D was really low as well, and is now supplementing. Not sure at all regarding Calcium(?). I think she will have much more monitoring going forward, as she will be continuing to try to start a family.
Thanks again,
Tom.
Thanks for posting. I'm slowly learning more about pregnancy and Crohn's. As a Father, I think I'm still on the fringe with understanding it all. You're absolutely right in that my Daughter has been plagued with low iron in the past. Ironically, the veg. based iron did raise her iron somewhat, and I don't really remember why she stopped it. Might have been complacency. Iron pills always gave her severe constipation.
Since there's quite a lot of blood required during pregnancy, and also a significant loss of blood from a miscarriage, this might account for her current anemic state.
Her Vitamin D was really low as well, and is now supplementing. Not sure at all regarding Calcium(?). I think she will have much more monitoring going forward, as she will be continuing to try to start a family.
Thanks again,
Tom.
I'm sorry I'm just now coming on this - and so sorry for her loss. That is really difficult.
I've given birth to 4 kids, and sprinkled throughout those pregnancies, I've also had 5 miscarriages (we think). So there IS hope.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
I've given birth to 4 kids, and sprinkled throughout those pregnancies, I've also had 5 miscarriages (we think). So there IS hope.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
scifigal2k said...
I'm sorry I'm just now coming on this - and so sorry for her loss. That is really difficult.
I've given birth to 4 kids, and sprinkled throughout those pregnancies, I've also had 5 miscarriages (we think). So there IS hope.
Thanks Sci,
So appreciate your caring post. She's doing good now, just had an iron infusion and tolerated that well.
I am so glad to hear that! It's amazing how the absence of just one element can wreak such havoc in our bodies.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor
Just curious ....is it advisable to continue on Stelara while pregnant? Any studies done to shed light on this?
UC/Crohns/PG Remission after 30yrs-p’ve for MAP antibodies & mycobacterium
chronic fistulas/abscesses 13 surgeries Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran, IVIG
30 yrs IBD--started as parasites, then IBS, UC, PG, CD
Dog had IBD
Permanent port insertion 2019.
both parents had IBD. My advice: be selfless don't procreate with ibd
UC/Crohns/PG Remission after 30yrs-p’ve for MAP antibodies & mycobacterium
chronic fistulas/abscesses 13 surgeries Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran, IVIG
30 yrs IBD--started as parasites, then IBS, UC, PG, CD
Dog had IBD
Permanent port insertion 2019.
both parents had IBD. My advice: be selfless don't procreate with ibd
I really don't know the answer to that. From what I understand, studies are ongoing, as Stelara is still considered too new to have enough evidence of safety with pregnancy.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
That's what I thought and generally I wonder how many studies there are specifically related to this issue.
I hope your daughter is coping well and glad to hear her bowel is stable!
UC/Crohns/PG Remission after 30yrs-p’ve for MAP antibodies & mycobacterium
chronic fistulas/abscesses 13 surgeries Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran, IVIG
30 yrs IBD--started as parasites, then IBS, UC, PG, CD
Dog had IBD
Permanent port insertion 2019.
both parents had IBD. My advice: be selfless don't procreate with ibd
I hope your daughter is coping well and glad to hear her bowel is stable!
UC/Crohns/PG Remission after 30yrs-p’ve for MAP antibodies & mycobacterium
chronic fistulas/abscesses 13 surgeries Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran, IVIG
30 yrs IBD--started as parasites, then IBS, UC, PG, CD
Dog had IBD
Permanent port insertion 2019.
both parents had IBD. My advice: be selfless don't procreate with ibd
Stelara is considered safe to use or continue during pregnancy. Small studies have shown no increased risks, and the PIANO registry of patient info has also shown no increased risks.
Thanks Beave,
Good to know.
Good to know.
Very Ironic that my post has recent activity, as I just found out yesterday, that my Daughter is now pregnant once again. 7 weeks along this time, so hoping for the best. Everything health wise looks really good right now. Only downside is that my Daughter is extremely anxious about having another miscarriage. She goes for the first ultrasound next week, so hoping for more good news there, and that a good report will calm her down.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.