Gina with her baby
Intro:
I’m currently 27, dealing with UC since I was 20. I’ve been on every medication under the sun –> asacol, lialda, simponi, etc. Finally settled on remicade (it’s working like a CHARM). I’ve been through countless HORRENDOUS flares and many, many rounds of steroids. Finally feel like I have it more under control, but still keep this HORRIBLE disease in the back of my head at all times. I’m always on the hunt for more information, latest studies, new treatments, etc.
Some more about me:
I loooooove food, food, and more food. This can be difficult for a UCer, but I deal.
Symptoms:
None, thank heavens!!
Have I Cursed My Daughter with a Bad Gut?
At around age 20, I started getting the early symptoms. But like many other young and dumb individuals I chose to brush them to the side and ignore them. Eventually, the disease developed and took over my life. I was let go from my job (they told me to get better and I could have my job back when I could work without being sick… that never happened). I was eventually bed-ridden and was down to 109 at my lowest weight. I’m 5’7 and typically curvy, so I wasn’t a pretty site. I knew things were bad when after leaving a stool sample I overheard the nurse say to the dr “oh my god, take a look at THIS!”
I was away at college when this all started so as my condition worsened I ended up having to move back home and be under my mothers care as I was completely helpless and could hardly do anything for myself. My mom ended up calling the ambulance on me and I was escorted to the hospital VIP style. I spent a week there and was finally diagnosed with UC after months of wondering and withering away.
So you see, I’ve been dealing with this CRAP (for lack of a better word) now for 7 years and have been through countless colonoscopies, doctors, flares, treatments, good times and PLENTY of bad times so I think I have it pretty down pat at this point.
My concern isn’t about myself… You see, when I met my current bf, we quickly discovered that his mother ALSO suffers from UC. I think it was date #2 that me and her traded treatment stories. Match made in heaven, don’t you think? Fast forward 4 years and we now have a child together. Yes, so this means that my poor, sweet little daughter has a double-dose of possible UC in her.
Ask Adam:
My question is actually about research. What are the chances that my daughter will develop UC? I think my doctor told me she has something like a 20% chance to get it since its in both of her parents bloodline, but is there any evidence of this?
written by Gina
submitted in the colitis venting area
Adam Scheuer, founder of iHaveUC.com
Hi Gina,
Big congrats to you and your growing family!
What a coincidence about you and your boyfriend’s mom both having UC. I’ve spent the past two hours researching all sorts of places to try and come up with an answer to your question and I am not making much progress. I’ve read through seven or eight studies from PubMed and I just can’t seem to find any exact figured or probability percentages that I think you’re looking for. There is all sorts of information and studies that I think you might enjoy researching since you’re the research type(me too:).
Here are some things I found which beat around your question:
Epigenetics and the developmental origins of inflammatory bowel diseases – this study had a section at the top which I’ll pull a tiny bit from which you might find particularly interesting:
Genetic predisposition to inflammatory bowel disease (IBD) is an intensive area of research, which was demonstrated by a recent request for application by the National Institutes of Health of the United States (RFA-DK-11-032). However, the emergence of the disorders over the past five to six decades with the spread of industrialization around the world (1,2), and the high monozygotic twin discordance rates (3) in both Crohn disease (CD) and ulcerative colitis (UC), argue for nongenetic factors being as or even more important for IBD pathogenesis than genetic susceptibility.
(There are quite a few links within that study. The author has linked to several other studies which talk about twins with UC and Crohn’s Disease and the genetic predispositions for IBD among them.
Another study did present a data point regarding a relatively large group of IBD patients. The study is titled: Clinical predictors of inflammatory bowel disease in a genetically well-defined Caucasian population:
Additionally, thirty seven percent of all IBD patients in our cohort have a positive family history of IBD, defined as a first or second degree relative with IBD, as compared to only 9% of controls.
I wish you and your daughter the very best, and a very long remission period to you.
-Adam
I’m currently 27, dealing with UC since I was 20. Ive been on every medication under the sun –> asacol, lialda, simponi, etc.
Hi Gina,
Great question. I been wondering this myself. Your story is so similar to mine. I have been battling for 16 years. I was pregnant with 2nd child when I found out that I have UC. I also have an older daughter 21. I always wonder if my son will have have it. I am too now on remicade after having a bad flare last year. Seems to be working but the side effects I could do without.
Hope they will find a cure and answer for this disease and soon. Good luck with your daughter =)
Barb
Hi Barb!
Thanks for the well wishes! What kind of side effects are you going through with Remicade, if you dont mind me asking? I am loooooving it. But the 6-mp I am also on has made me experience terrible hair loss and overall destruction of my hair. But hey, for the amazing way I feel, Ill take it!
Hi, Gina
First congratulations on you beautiful baby girl! I’ve read posts where UC does run in some families, unfortunately. Maybe you could help ward it off by feeding her a good diet, specifically with no gluten or only unhybridized wheat such as einkhorn wheat. Sprouted wheat is a good way to go. It’s really hard to know if this will be passed down. I had a DNA test done by 23andme and I had no markers for UC, no one in my family has it, but yet, here I am. I truly believe mine was caused from eating modern wheat.
I was on Remicade for time and it worked wonders for me, too. I had to go off it because of the cost. I’m getting older so am thinking in the next couple years if I keep flaring, I may have my colon removed so I don’t have to deal with it in my old age.
Hope you continue to do well! It’s not a fun thing to deal with.
Maggie :)
Hi Maggie,
Thanks for the kind words! Ive been trying to figure out if genetics have anything to do with this disease for years now. My mother has digestive discomforts but nothing to the level of UC so I cant seem to figure out where this all came from.
You had said that you were having trouble paying for remicade? I am part of a cost support program that covers a large amount of the cost. I end up only paying $50 per treatment. Maybe it could work for you as well. Here, take a look http://www.remistart.com/
Hope this helps.
Unfortunately UC is heritable, I have two kids – none of them have it yet but there are few thing you can do:
– No antibiotics unless its life threatening, absolutely avoid in the first year of life, and if possible for the first 5. Antibiotics are linked to permanent changes in the gut when used at such an early stage.
– Plenty of fermentable fiber, I give my kids FOS / Inulin and lots of veggies. Dietary fiber is negatively correlated with incidence of UC.
– Probiotics / Fermented food, my kids eat kefir/sauerkraut to introduce them to beneficial bacteria.
Good luck – also in 20 years I would like to think the UC problem will have been solved. So much research into the gut these days.
Hey Andy,
Thanks for the info! Really helpful. I try and mix in plenty of greens into her food and since shes still so little she doesnt know that difference! hah! Ill ask her pediatrician about introducing kefir and whatnot. I dont know at what age that is ok to start. Unfortunately shes already been on antibiotics once. =( yea i know… I wasnt too happy about it but she had already had a fever that felt like her body was on fire and then she got 2 ear infections that were making her noticeably uncomfortable so it was the last option. I wouldnt be able to forgive myself if she got UC from me. I cringe just thinking about it. But like you said, hopefully in 20 yrs this will just be something like the common cold.