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The UC curse!

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Ulcerative Colitis
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1637
Posted 2/19/2022 4:46 AM (GMT -8)
I definitely have been cursed like everyone else here on the UC board.
I believe mine to be hereditary. I have that Ashke**** Jewish decent bloodline. My Grandfather died of colon cancer.
Just curious if anyone else here has the same hereditary crap.
Faith
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momto2boys
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Joined : Jun 2013
Posts : 2617
Posted 2/19/2022 6:08 AM (GMT -8)
My UC could be genetic, but my ancestry is 99.9% Irish/Scottish/English. On my dad’s side of the family my grandfather had IBS with unexplained bleeding whenever he stopped smoking. (Sound like UC to me.) I also have a cousin on that side of the family with a child who has Crohn’s disease. On my mother’s side, my great grandfather died of “bleeding ulcers” and my grandmother, his daughter, had 2 small bowel surgeries for an obstruction and structures in her 40’s and lost her colon in her 70’s due to ulcers and diverticular disease. Could be genetic, but between my 9 aunts and uncles and 30 plus cousins and so far I am the only one in my generation with any form of IBD.
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Faithmac
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Posted 2/19/2022 6:18 AM (GMT -8)
On some forms I’ve filled out for a GI there’s the question are you Ashke**** Jewish descent. Seems Eastern European Jews are prone to bowel issues.
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clo2014
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Joined : Feb 2015
Posts : 2167
Posted 2/19/2022 7:34 AM (GMT -8)
Faithmac,

Yes I have read that too. Did you have a genetics test to determine? Just wondering...

My German Grandmother was a sticker about what and when she ate because she would get really ill when she was lax about it. I remember she would have periods when she'd get so frustrated at people because she could not eat. My uncle's never understood--they thought it was a choice. She would chase us out of her house screeching I'd eat if I could you fools... I can't eat. Then my Mom went thru a period like that, refused to see the doctor, started going to the bathroom right after she ate, and eventually started taking laxatives every day for over 20 years--because she could not "go go" without them. I was healthy-never sick until I got food poisoning. Then aggressive severe Crohn's dx. My doctor's are always asking me "are you sure you are not Jewish" I always wondered why.
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Faithmac
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Posts : 1637
Posted 2/19/2022 8:43 AM (GMT -8)
I was thinking about being tested. My primary asked me if I wanted to. Wonder if it’s expensive? Have a feeling it’s not covered.
I’m 66 and feel like I’m rotting from the inside. Outside I look not so bad.
The Jewish thing is real when it comes to stomach issues. I have German blood also. Most of my family has some type of stomach issues. I have the worst .
Since being run down by a car last May my UC has been much worse.

Maybe you have some Jewish blood somewhere in Your family way back when lol!
Definitely a cursesad
( I’m not religious, so I don’t feel bad saying that)
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Ms2011
Regular Member
Joined : May 2020
Posts : 91
Posted 2/19/2022 8:45 AM (GMT -8)
I'd never even heard of UC or ever even beeb sick until I was diagnosed at 37. I'd heard of Chrons cos a girl in my office had it but I didn't really know what it was only that it had something to do with the digestive tract.
My Dad had stomach ulcers when I was young, I don’t know if that counts?
Anyway 2 years after I was diagnosed my nephew was diagnosed with UC also, it was like lightening striking twice after having no one in the family with the disease to all of a sudden having 2.
So is there a genetic link, I don’t know but I hope for my kids sake there isn't.
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Serenity Now
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Joined : Jan 2009
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Posted 2/19/2022 8:48 AM (GMT -8)
My mom had "stomach" issues for years and years. It was chalked up to IBS, which in her case I think meant "Don't really know what it is, so we'll just call it IBS". She never had a colonoscopy until they suspected colon cancer and sure enough found it but long after it had metastasized.
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Faithmac
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Posted 2/19/2022 8:52 AM (GMT -8)
There definitely is a genetic link. Come to think of it on my Mothers side too many to count that have some type of intestinal issues. My mother’s sister lives on prunex. It’s a laxative. My Fathers side too, not as much.
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FlowersGal
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Joined : Feb 2017
Posts : 1797
Posted 2/19/2022 9:06 AM (GMT -8)
No one else in my immediate family has UC or chrohns. But type 1 diabetes (autoimmune disease) runs very heavily on my fathers side.

On my mothers side I didn’t know her grandparents at all and my grandmother died when I was 6. I suspect bowel issues for that generation was not something one talked about. My grandfather carried a tin of milk of magnesia tablets in his pocket and was always chomping on them but I don’t know why. Maybe for heartburn?
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 477
Posted 2/19/2022 3:01 PM (GMT -8)
Hi Faithmac, yes I have the genetic 'curse'! UC, AS and Psoriasis run in my wider family. It's interesting that the pattern of who develops one (or more) of these illnesses and who dodges the bullet isn't clear. I don't have Jewish heritage but I have inherited some 'crap genes' from one side of one side of my family (ie one Grandparent's line).

I don't feel particularly unlucky though because many people have illnesses that run in the family. I'd rather have UC than early onset dementia for example.
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Faithmac
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Joined : Apr 2008
Posts : 1637
Posted 2/19/2022 7:40 PM (GMT -8)
Kind of ironic you said that. My Sister had breast cancer at the age of 44. It’s been 18 years that she’s been cancer free. She asked how I was feeling the other day. Said pretty crapty. She then asked me would I rather have what she had breast cancer or my UC? I said UC . I asked her what about you. She said Breast Cancer. Thank god she’s healthy and Cancer free unlike me who will probably have this forever. She said hers was awful and doesn’t wish that on anyone. What she had is done with and hopefully never returns. Mine is just ongoing and shows it’s ugly head too often.
My gene pool is not a pretty picture. My Mother died of Ling Cancer at 59, Father lymphoma, Sister is a survivor of Breast Cancer and my younger Brother has Systemic Lupus. Doesn’t sound too good to me! Maybe I should get tested?
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19559
Posted 2/20/2022 5:44 AM (GMT -8)
Faithmac, it doesn't surprise me a bit that your UC has been worse since you got ran over. Jeez, the injuries you sustained & the ongoing process of healing from them, you are strong woman. That put your body under a tremendous amount of stress.

AI's run in my family, my dad & sister both with RA, lost this sister recently to dementia. Heart problems & cancer on both sides of the family, sister had breast cancer, my mom died of lung cancer, dad died of a massive heart attack one day before he was to be released from the hospital. My brother died young of heart & lung issues. I've had 2 serious instances of it just wasn't my time yet, even when the drs said you may want to call any out of town family to come now. I sum up the family history as I come from the bad gene pool. I will be 68 in June, yes, it does seem like it gets harder to bounce back as we age when we get hit with something.

I will share something I saw several years ago. I was walking out of Home Depot one day, ahead of me was a young mom with 3 of the cutest kids. The oldest looked to be about 7 & the youngest was the cutest little blonde boy about 3 years old in a wheel chair. His siblings were on each side of the wheelchair pulling him along, they were all smiling & laughing, not a care in the world. It brought tears to my eyes, I got in my car & just bawled. I am not an emotional type of a person, but that sight struck me to my core. I thought to myself in spite of everything, things could be a lot worse for me. I have never seen a tiny wheelchair like that in my life. To this day, I can still see this image of the 3 kids. Even when I am at my worst, I always remind myself there is someone somewhere a lot worse off than me.
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CCinPA
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Joined : Dec 2014
Posts : 2717
Posted 2/20/2022 7:10 AM (GMT -8)
I remember that both of my parents had digestive issues -- my dad drank liquid milk of magnesia every day (kept it on his night stand by the bed) and would spend a long time in the bathroom. My mom often had bouts of diarrhea. Neither were ever diagnosed with IBD. When my mom was in her 70s she had colon cancer. The cancer was removed and she never needed radiation or anything. She lived to be 93 without a re-occurance of the cancer though she did continue to have bowel issues on and off. Since being diagnosed myself, I've often wondered if both of them had some form of IBD.

I had the occasional intestinal bug that would clear up in 2 days in the years before I got very ill when I was 53. That "bug" landed me in the hospital and a UC diagnosis. I had a clear scope with no issues 2 years before that when I got my first over 50 recommended scope (my mom had been bugging me to get it since her cancer diagnosis)

Reading this thread a genetic connection to IBD seems likely for many.
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quincy
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Joined : May 2003
Posts : 33632
Posted 2/20/2022 9:52 AM (GMT -8)
While things can always be worse,. (and tomorrow sometimes is) I never use others' suffering as a measuring stick for my own. I try to be empathetic and sympathetic. I'm grateful for what I don't have, and I hate what I do have ...I don't undermine my own reality. What I've inherited is overwhelming and expensive... adding in the other over and above stuff can definitely be mentally exhausting.

Faithmac...do your doctors know cancer and lupus runs in your family? I would push for some genetic testing that is in that direction of monitoring.

q
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Faithmac
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Joined : Apr 2008
Posts : 1637
Posted 2/20/2022 12:11 PM (GMT -8)
Quincy,
Yes they do. You know when you have to fill all that family history out on the forms when you go to a new doc. There aren’t enough lines on the page for mine. They all say wow you have some family history. My primary asked me at my last visit 3 months ago if I was interested. I think I might be a little nervous to find out. Taking all these biologics kind of makes me a little Leary.
Anyone know how much one of these genetic tests are? I’d be curious. I see my primary next month, I’ll inquire then
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Old Hat
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Joined : Feb 2007
Posts : 5907
Posted 2/20/2022 1:15 PM (GMT -8)
Sorry to read that you suffered auto accident injuries last year. That for sure would cause your body additional stress, then affect your UC, too. The most experienced IBD researchers & physicians think that Crohn's & UC develop by a combination of heredity AND environmental conditions. about 10 years ago two of them in the U.S. compiled a research hardback for medical education called The Changing World of IBD. It documents increasing incidence of IBD in countries and populations where it had never been DXed until recent decades, such as in India & Japan. I believe that to be true, and also agree with Quincy & Straydog's comments above. You may decide to pursue genetic testing. Would it alleviate your physical discomfort? *** Like Straydog, I had a story of childhood disability crop up that made me reassess my own personal physical trials. A neighbor of mine who is a psychologist doing education placement for kids & teens with life-threatening health conditions told me she was going to hospital visit with a 5 year-old boy awaiting radiation treatment for retinal cancer in his remaining eye. (The other eye had been removed due to retinal cancer when he was only 18 mo. old!) That story totally stopped me in my tracks!!!! His parents were trying to do the best for him, knowing that retinal cancer has a hereditary component. Thus far "pencil-beam" radiation administered in hospital stay to his good eye has saved his remaining sight for 6 years. That story always makes me feel very thankful for what I have in life. Wishing you steady improvement in recovery from your accident and UC set-backs. Take good care. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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Faithmac
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Posts : 1637
Posted 2/20/2022 1:36 PM (GMT -8)
Thank you Old Hat!
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clo2014
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Joined : Feb 2015
Posts : 2167
Posted 2/20/2022 5:09 PM (GMT -8)
Faithmac,

I am sorry you were ran over. Gosh how awful!!

When we go thru other "situations" our IBD can really flare and go crazy.

Be safe and take care!
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clo2014
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Joined : Feb 2015
Posts : 2167
Posted 2/20/2022 5:21 PM (GMT -8)
When I am feeling really sorry for myself I think of my nephew's and nieces. One was burned as a child... 75 percent of his body. He is a miracle. Everyday he has to lotion up his hands and body just so he can move-. He struggles with things but works thru it. His siblings took him everywhere with them. They challenged, helped, laughed, cried and fought the mean kids with him. They inspire me every day.

I think that genetically we may inherit the possibility of a disease. I believe we also inherit that fighting spirit and that sometimes remembering something that impacted us and touched our hearts can quiet our souls and tell us we can do this.
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1637
Posted 2/20/2022 6:59 PM (GMT -8)
Clo,

Lucky I’m alive! My Colitis has never been the same. Was in remission at the time. Broke my pelvis in two places. All the pain meds plus the trauma just screwed with my intestines.
On a positive note I think I might be feeling a little better on the Remicade. Headache seemed to be better today.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 2/20/2022 7:48 PM (GMT -8)
Not me. I'm the only lucky one in my family that I know of...
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 2/21/2022 8:46 AM (GMT -8)

clo2014 said...

I think that genetically we may inherit the possibility of a disease. I believe we also inherit that fighting spirit and that sometimes remembering something that impacted us and touched our hearts can quiet our souls and tell us we can do this.

I love this, Clo.
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3840
Posted 3/15/2022 6:36 PM (GMT -8)
My UC is definitely hereditary. My uncle and a great grandfather had it. I was sterilized with my jpouch repair last September. I will not pass this on.
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Rickk90
Regular Member
Joined : Aug 2013
Posts : 181
Posted 3/15/2022 8:12 PM (GMT -8)
I thought I was the only that freaked out about this. My father passed away due to colon cancer. I’m currently in a flare and constantly thinking the worst /:
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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1637
Posted 3/16/2022 10:49 AM (GMT -8)
My GI has it written in my medical history ashke**** . There was actually a place to check. If you look it up Eastern European Jews have a high rate of having intestinal issues and problems. I think we hold all our anxiety and worries in the gut. I have a lot of family members mostly on my mothers side that suffer from stomach issues.
That’s just one sect of people. I do think it runs in families. My first GI asked if I had any other family members that had colon cancer or other issues . Why did he ask? I guess it can be hereditary and maybe not. More of a chance I would think if you had a family that did.
Some people on this thread said they had no family members that suffered with any of this,
It’s a crap shoot!
I wouldn’t freak out about it. Try to be proactive in your care. My Grandfather never went to the doctor. He died of colon cancer. Maybe he wouldn’t have had he seen one.
I was afraid of taking biologics quite a few years ago. I was even thrown out of a GI’s office for not complying with his course of action. Look at me now I’ve taken almost everyone that’s available.
Worrying can just make things worse.
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