On March 9th, the IBD Social Circle held a Twitter chat to discuss pregnancy, birthing, and parenting as an IBD patient. I was the host, and Stephanie Hughes of The Stolen Colon was my co-host. Our featured gastroenterologist was Dr Edward Loftus, Jr of Mayo Clinic. It was a lively chat with lots of great information that I don’t want anyone to miss! Here are some of the best Tweets from the chat!
We start off with a question that’s on a lot of women’s minds: how will surgery impact your ability to get pregnant? Both Dr Loftus, and another friend to the IBD Social Circle, Dr Peter Higgins of the University of Michigan, weighed in on the question.
@JournalingIBD It's possible, but hard to predict for individual patient. If surgery involved going into pelvis, may be an issue #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
@EdwardLoftus2 @JournalingIBD Part of it seems 2B whether scar tissue blocks fallopian tubes. If blocked, ovaries and IVF still work #IBDSC
— Peter Higgins (@ibddoctor) March 9, 2016
@JournalingIBD May be less of an issue with laparoscopic surgery (as opposed to open) #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
@AishaAlSerkal It might increase the chance of small bowel obstruction, or it might reduce fertility, but can't predict in one person #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
If you have a j-pouch or an ostomy, should you get pregnant? Myself, I did it twice (and I didn’t ask anyone if it was OK!), but here’s what Dr Loftus said:
@aboutIBD No recent studies on #ostomy patients but old data suggest mostly safe; most studies of #jpouch suggest it's safe #IBD #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
One of my hot-button issues is cesarean sections (c-sections). Dr Loftus gives the answer on when it might be needed (and when it is not needed, which is most of the time!).
@CrzyCreoleMommy @aboutIBD The one scenario where Csection definitely needed-active perianal #Crohns #IBD #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
In my personal experience with an #ostomy, I was able to have a natural childbirth and was not required to get a C-section. #IBDSC
— Stephanie Hughes (@smlhughes) March 9, 2016
We talked a little about sleep as a parent — it’s in short supply, but very important for IBD patients!
@aboutIBD Some of my #IBD patients say they can shorten flares if they increase sleep amount early in flare–easier said than done #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
And another big issue for people with IBD, is passing along the disease. Most people with IBD don’t have a family member with the disease, but we know now that there are genes that code for IBD, which are activated by one or more “triggers.” Here’s more about IBD risk.
@taswani23 If one parent has #IBD it may be about a 10-15% risk to an individual child #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016
@Sobrightstars @colitisandme Risk may be slightly higher if more than one 1st degree relative affected–maybe more like 20%? #IBDSC #IBD
— Edward Loftus (@EdwardLoftus2) March 9, 2016
And — some reassurance for those of us who get a little freaked out over the “tummy aches” of childhood!
@aboutIBD Understandable, I get asked a lot about my patients' kids' GI issues–90% of the time it's nothing #IBDSC #IBD
— Edward Loftus (@EdwardLoftus2) March 9, 2016
Another for the “good to know” category: pregnancy with IBD can vary widely, and about 1/3 of patients actually do better while pregnant. Unfortunately, there’s no way to predict who will feel better and who won’t ahead of time.
@aboutIBD Best to have your disease (inflammation) under good control, that's biggest single factor for success #IBDSC #IBD
— Edward Loftus (@EdwardLoftus2) March 9, 2016
A5. I'm so afraid of saying this out loud, but my #IBD improved during pregnancy and has stayed that way. #IBDSC
— Rosanne Mottola, APR (@RoeMoPR) March 9, 2016
In regards to infertility, it’s best to get on top of it right away. If you’ve been trying for 6 months, see your doctor. For “healthy” couples, the advice is usually to check with a doctor after a year, but for couples who have IBD, the threshold is lower.
A3 from a mom's perspective: Go see your docs early. Don't wait and add stress. If something seems off, see a fertility doc early. #ibdsc
— Rosanne Mottola, APR (@RoeMoPR) March 9, 2016
@lornamary_1981 You aren't alone! Get specialist help if possible from reproductive endocrinologist #IBDSC #IBD
— Edward Loftus (@EdwardLoftus2) March 9, 2016
Here’s advice from some experienced moms with IBD!
A4: I dealt with intestinal blockages during pregnancy, so I’ve learned to be extra careful with food when pregnant with an ostomy. #IBDSC
— Stephanie Hughes (@smlhughes) March 9, 2016
A7: I am grateful for the things IBD has taught me and how it has shaped me as a person. I hope to pass that on to my children. #IBDSC
— Stephanie Hughes (@smlhughes) March 9, 2016
A7: more creative. Having fun whn mommy flares. bathroom trips while baby wearing. More patient & realistic #IBDSC https://t.co/VTWXFawGR3
— TheCrazyCreoleMommy (@CrzyCreoleMommy) March 9, 2016
A7: Sometimes it's hard to connect w/parents who don't have #IBD. Things that worry them seem less important to me. Working on it! #IBDSC
— Amber J Tresca (@aboutIBD) March 9, 2016
I mean, we know what our kids can handle. As much honesty as they can handle is probably best. #IBDSC https://t.co/nrM0xxS2N7
— TheCrazyCreoleMommy (@CrzyCreoleMommy) March 9, 2016
A6: My son is too young now, but I hope to use it to teach him empathy & that you never know what’s going on beneath the surface. #IBDSC
— Stephanie Hughes (@smlhughes) March 9, 2016
And I end with the absolute game-winner for the Twitter chat!
@smlhughes All docs should be required to be sick enough to be hospitalized at least once! (half-serious, in regards to empathy) #IBDSC
— Edward Loftus (@EdwardLoftus2) March 9, 2016