My younger brother (mid 30s) was unfortunately just recently diagnosed with Crohn's. In retrospect he has had lactose intolerance for many years, as well as other symptoms that a GI dismissed as IBS several years ago with no further follow up. He's had these various "IBS" symptoms for 8 or so years, but the diarrhea frequency increased lately and he has finally been appropriately diagnosed with IBD. My diagnosis is and always has been UC, pre and post-operatively, for the last 14 years. 

I am curious about other people's experiences with familial occurrences.  It's interesting to me that before my own UC diagnosis, absolutely no one in my family had IBD. Neither one of my parents have IBD or any GI issues for that matter. My sister does not have any issues.  However, a 2nd cousin has since been diagnosed with Crohn's (at age 13), and a maternal uncle had GI issues throughout life that were never formally diagnosed but after my diagnosis, we suspected could have been IBD.  My maternal grandfather died of colon cancer. I am also concerned about one of my nieces who has always had "tummy troubles" but the pediatrician has not so far felt there is any need to investigate further.

I strongly suspect a genetic link but I have often read that there is only about a 30% chance the disease is genetic in that sense, which leaves 70% with no apparently genetic link.  Just wondering other's experiences and thoughts on this topic.




Original Post

My father carries an “IBS” diagnosis- scopes show some mild inflammation in his colon and a problem with “sacs” on the lining of his colon. I was UC pre-colectomy and later diagnosed as Crohn’s Disease post-colectomy although my opinion is that the actual diagnosis and whether it’s correct or not matters very little. It’s inflammation of the bowels, and regardless of where it is or what you call it, it’s either treatable or not, and generally the same drugs are used to treat inflammation in the same areas.

While the bad colons may be on my father’s side, the bad thyroids appear to be from my mother. My mother and sister are hypothyroid and 4 years ago I developed thyroid cancer and now have no thyroid and no colon. I still have my wisdom teeth, for now.😁

I tend to agree -  Crohn's and UC are flipsides of the same coin; IBD is IBD and many of the treatments and symptoms overlap. Mine just happened to be treated by obliterating the colon. Heh.

Interestingly my father has, and is a carrier of, hemochromatosis. Given that I have  IBD my iron has always been low. So I may have lucked out of the hem lottery in the weirdest way.

Sorry to hear about your thyroid cancer, I've been here only sporadically the last couple of years. I didn't know.  Hope you are doing well!

That said, I don't have my wisdom teeth, so there you go.


Well I  was diagnosed with UC on the age of 17 in 2017, went on infliximab (remicade) for a few months which helped me a lot with my symptoms but had a very bad flare up a month later and ended up with a colectomy and now a JPouch ( im new here by the way) 

Same situation with my sister but a little different who had UC but was later re diagnosed with Crohns (she got hers under control with prednisone)

And then we have my brother who was diagnosed with Chrons and has his under control with Humira. My mother has a form of IBS. 

My grandfather had problems with his GI tract.

My uncle has UC and her daughter has Crohns

So a family issue and definetly a genetic one




The thyroid cancer was discovered on a routine annual physical in May 2015. After some tests they found a tumor in the thyroid, around 1 cm, had just started metastasizing into lymph nodes. Stage 3 but it’s a 97% survival rate with that cancer. Surgery in July 2015 removed thyroid and 2 lymph nodes. I then received 157 millicuries of radioactive iodine and have been cancer free ever since. I got lucky on that, to be honest, just like I got lucky on my colon being removed when it was, with dysplasia and very close to perforating.

As far as the wisdom teeth, my father just had his removed at age 81 (which I don’t really understand why it was necessary but a doctor in Florida convinced him it was and a second opinion corroborated it, supposedly, despite no symptoms). So if I make it to 81 there may still be something more to take out of my body.

I mentioned that as a joke because at the time I had my thyroid surgery, I mentioned to my surgeon’s assistant that I had both colon and thyroid removed and I was wondering what else could be taken out of my body. She was a young woman in her 20s and without missing a beat she said to me, “how about your wisdom teeth?” I was impressed with how spontaneous her reply was and we both laughed.

I'm glad to hear your doing well. A friend of mine was herself diagnosed with thyroid cancer about 2 years ago and also went through removal of the thyroid and radioactive iodine. She's done quite well. Her oncologist told her in good humor that she got "the good cancer".

I was also extremely lucky to have my colon removed when it was. Who knows what would have happened if the GI had not had the good sense to decide to have my CT scan results further reviewed by a surgeon (who noticed the "air bubbles" in the colon wall and recommended I undergo an emergency colectomy that day). If my surgery had been delayed even a day or two longer, there was a very high likelihood I would have perforated.

We have all been through a lot here, some of us more than others, and sometimes the only way to approach it is with humor.  Actually, I told my surgeon just prior to my last surgery, that he could go ahead and take out anything else he thought shouldn't be in there while he had me on the table, because I was getting tired of doing this and may as well have it done all in one go. LOL

2 of my dad's first cousins had FAP and goodness knows how many others had IBD. Almost all of the women on my dad's and my mom's side had hypothyroidism. Mom was on Thyrox since goodness knows when (I was a teenager and she even gave me some to see 'how it would affect me') and all of my dad's nieces have it...right now my thyroid is the size of a baseball. But apparently, in my case, it is seasonal (???!) looks this way every winter and then goes back to normal in the summer...doc says that it has to be monitored regularly.

We've got both diseases on both sides of my family so I suspect that they go hand in hand for some of us. 


In my husband's family... 

  • his father- UC
  • himself- UC, high-grade dysplasia, very successful jpouch for 15 yrs
  • his son- UC, 2 failed jpouches, waiting on surgery to remove
  • his sister- UC, died of colon cancer at 28
  • his niece- UC, permanent ostomy
  • his cousin- crohns
  • his cousin's son- crohns
  • his 2 uncles- UC


Drs said there was only 8% chance of passing this on.  Proved them wrong.


Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.