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Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/4/2017 4:17 PM (GMT -7)   
My grandmother on my father's side had IBD, although It was never clear on whether it was Crohns or UC.
My elder sister and her daughter both have Crohn's disease.
My middle sister is fine, but her daughter has Crohn's.

I always 'blamed' my grandmother for having this disease and then today I found out something unbelievable. My sister informed me that my mother has just been diagnosed with severe Ulcerative Colitis.

What are the chances of that?

No wonder our family is riddled with this disease...that makes six family members with IBD!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 109
   Posted 12/4/2017 4:39 PM (GMT -7)   
For me it helps a little knowing that others know what I am going through, but it's also depressing to me that both my dad and younger brother have Ulcerative Colitis as well. My mother is celiac. I never was diagnosed with celiacs due to no insurance at the time, but I was pretty sick before going gluten free. For some reason thought I couldn't get Ulcerative Colitis too, but was in for a surprise. My maternal grandfather died of colon cancer and had never been able to eat bread. Other than that, the immediate family frequency has been perplexing. I have wondered if living among the cotton fields and under the crop dusters hasn't played a part. My younger brother was born there, got sick around age 24. I moved there age 5, was 35, and my Dad was 25 when he moved there and was closer to 50 when diagnosed. Sorry your mom has just been diagnosed too.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 12/4/2017 5:26 PM (GMT -7)   
That's a lot of IBD in one family. My maternal grandmother had Crohn's and my paternal grandfather officially had "Ibs" with "suspicion of UC" but he kept his disease in symptomatic remission by smoking. However his colon was full of inflammatory polyps every time he was scoped and had scarring indicative of IBD. So far I am the only one of my siblings and cousins that I know has IBD, but there could be others, none of my parent's siblings have IBD, but I have an aunt with IBS on my mom's side.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3944
   Posted 12/4/2017 7:45 PM (GMT -7)   
you mom does not have the disease to pass on your grandmother's genes that associate with IBD. you don't have genetic susceptibility because you mom does or does not actually have IBD. You have genetic susceptibility because of the genotype of you family line.

that you mom, who share genes with you and you grandmother would develop IBD later in life is not that unbelievable - it makes sense that she did.

hopefully yall can all support each other.
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/5/2017 8:59 AM (GMT -7)   
Thanks for your replies, I just needed to get that off my chest.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 12/5/2017 10:52 AM (GMT -7)   
That's a huge lot of family genetic sharing and connection to IBD! How is your mom doing?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/5/2017 1:53 PM (GMT -7)   
I don't know, we fell out June 2015.

That being said, when I received a note from my eldest sister a couple of weeks ago saying that she was ill, I held out the olive branch because she made it sound like she was on death's door. They thought she might have cancer and so I said that she could contact me and we would talk. Honestly, I really didn't want to do that, as she is toxic but thought it the right thing for me to do under the circumstances.

Fast forward to TODAY! I get a note from my sister with no reference to our last email..nada! Upon enquiring as so what happened she told me that my mother hadn't got around to emailing me yet...

My parents once fell out with my elder sister and they didn't speak for nearly ten years!! I have never heard of other families where their parents are quite happy not talking to their children for years...

Anyway sorry for the novel but I'm feeling like I needed to get that off my chest too!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 109
   Posted 12/5/2017 2:03 PM (GMT -7)   
That kind of thing certainly has its own ball of stress. Hugs
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/5/2017 2:06 PM (GMT -7)   
Poppie said...
I have never heard of other families where their parents are quite happy not talking to their children for years...


*cough* You haven't met my family.

Anyway, I'm sorry about your mum. That's a ridiculously strong family history of IBD you have there. I've got some family history, but not as much as yours. Needless to say I've got the worst case that I know of in the family - although to be fair I don't know about the Irish lot still living in Ireland because we never see them.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/5/2017 3:43 PM (GMT -7)   
Thanks Spring!

ncot..Haha yeah, it's not easy. I don't want to be in a position whereby one of them dies and we never made up. I don't even want to have to speak with them on Skype as that raises my blood pressure and it never works. Just to be able to email occasionally would suffice. The worse thing is that I have never heard my Mother say the two words "I'm sorry" she wont say it.....ever.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/5/2017 5:32 PM (GMT -7)   
Are you sure your mum isn't my long-lost aunt? My mum, too, will never say "I'm sorry". I don't think she's acknowledged a piece of bad behaviour or cruel words spoken towards me in her life. She was also quite happy not speaking to me for months; the silence would probably have gone on for years if I hadn't phoned her first.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15427
   Posted 12/5/2017 7:01 PM (GMT -7)   
My mom doesn't say sorry either - she's a total narcissist. Nothing is ever her fault and she's never wrong. I haven't talked to mine in years. I did once but it was a mistake. I wouldn't put out an olive branch to her, even if she were ill. I feel terrible saying that, but it's true. I gave my mother some terms to meet in order for me to feel like she has the proper level of respect for me, until those terms are met, she's dead to me. They will never be met. It would be so simple for her to do what I ask, but she chooses not to because she can't admit she's wrong. Sometimes doing what you want isn't what's right, and in her eyes, what she wants is always right.

My mom probably has IBD. She's always got a "sick stomach". She would never in a million years tell anyone anything that would indicate weakness though, so who knows.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 366
   Posted 12/5/2017 8:19 PM (GMT -7)   
Poppie said...
My grandmother on my father's side had IBD, although It was never clear on whether it was Crohns or UC.
My elder sister and her daughter both have Crohn's disease.
My middle sister is fine, but her daughter has Crohn's.

I always 'blamed' my grandmother for having this disease and then today I found out something unbelievable. My sister informed me that my mother has just been diagnosed with severe Ulcerative Colitis.

What are the chances of that?

No wonder our family is riddled with this disease...that makes six family members with IBD!


IBD that runs in families, especially from parent to child, may be due to transmitted infections.
https://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-2-21

Studies were done in Europe on entire families who have IBD and they all had some form of contagion. It's not just a matter of genetics.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 12/5/2017 10:26 PM (GMT -7)   
Wow!! That's a lot of family members having UC.

I always wondered about genetics, UC and Crohns. My aunts, uncles and cousins have passed away with cancer..but it was not colon cancer. My grandmother was a very picky eater and eventually she just stopped eating and wasted away. I didn't understand until I could not eat....then I was diagnosed with UC and then Crohns. My Mom and my Dad used to go to the bathroom about 20 minutes after they ate...but no other issues that I know of. No one else in our family has/had Crohns-including cousins...Very interesting.

Families can be difficult. I regret so many things. I didn't think I would....but now that my Mom is gone...I see so many lost opportunities. So sad... But that is just me.... And I am afraid that if our children see us treating our parents that our behavior will have a negative impact on our children. I dunno...just makes me sad.

Clo

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 903
   Posted 12/6/2017 5:30 AM (GMT -7)   
My mom had UC--ostomy. Dad, highly likely had CD. I've got the worst case sad. As far as I know my other family members are fine.

Never, ever an apology from my mom....at least not one riddled with sarcasm.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/6/2017 8:53 AM (GMT -7)   
notsosicklygirl said...
My mom doesn't say sorry either - she's a total narcissist. Nothing is ever her fault and she's never wrong. I haven't talked to mine in years. I did once but it was a mistake. I wouldn't put out an olive branch to her, even if she were ill. I feel terrible saying that, but it's true. I gave my mother some terms to meet in order for me to feel like she has the proper level of respect for me, until those terms are met, she's dead to me. They will never be met. It would be so simple for her to do what I ask, but she chooses not to because she can't admit she's wrong. Sometimes doing what you want isn't what's right, and in her eyes, what she wants is always right.

My mom probably has IBD. She's always got a "sick stomach". She would never in a million years tell anyone anything that would indicate weakness though, so who knows.


I feel much the same way....but it's not a popular thing to admit to. It is hard for people that have had a 'normal' upbringing to understand the pain of not being loved by one's parents. Today I feel out of sorts and that always happens when my parents are somehow on my radar!!! I just feel really annoyed with my sister, for mentioning them to me in the first place, and then completely forgetting about it! while I was waiting for a reply...Jeeez.

One thing I want to share..When I had my daughter many years ago I lived 15 minutes away from my parents and they NEVER once came to visit to see their granddaughter...things like that you never forgive or forget. The only time they saw her was when I visited them...everything about the pair of them is unnatural..

ncot...Sorry to hear that...it seems like it must be a generational thing...to not admit to nada!
clo...thanks
UBTough...hope your doing ok
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 12/6/2017 10:21 PM (GMT -7)   
Poppie,

Wow...That is sad. My Mom didn't have an "off" button. She thought she had the right to say or do what she wanted. She pitted her 3 kids against one another...Threw pop bottles at you if you disagreed with her...scary stuff for a kid to see. She was only like that if she drank. When she didn't drink... she would always tell me she loved us... When she got older she wasn't like thatvery often...-although she did still pit us kids against one another...but she did love us. My Dad was a rock. Steady...loving. A great Dad. He died when I was 20. My Mom just died a few years ago. I miss them both... So I had some normal and some scary stuff.

So when I grew up, I went to college to study...what else but psychology...and had kids...I made sure they had the "Leave it to Beaver" upbringing. I did not take my kids around my brother or sister because of all the drama with my Mom. I tried to do everything right... They had a normal...happy home life. Then..
Well....everything changed.

It seems as though there is drama drama everywhere.... Its good..yet sad..to know it is everywhere...that I am not alone in experiencing difficulties with parents..children..or siblings... I would say...remember...once they are gone there isn't anyway that you can make it right. Don't lose out on those opportunities.

Clo

Flo...
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/8/2017 8:21 AM (GMT -7)   
Clo, that sounds grim. Living with a person that drinks is horrific, I know all about that.

As parents, we all do the best we can, and we try not to make the same mistakes we feel our parents made, it is not easy. I have one daughter and I made sure that I always made her feel good about herself because I am never ever going to feel really good about myself, my mother made sure of that.

I saw my GI yesterday, the first time in months, and I explained I am still unable to tie my shoelaces, bend down, and I feel like I have had my feet beaten with a stick. He wants me to see a Rheumatologist to make sure that there is nothing else going on. My ankles are swollen as well, although the blood test came back good. I still think its the prednisone withdrawal, its been just over two months now since I came off it.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10095
   Posted 12/8/2017 9:03 AM (GMT -7)   
Oh god yeah, living with a heavy drinker is horrible. My mum was, and still is, one. I don't know about when I was a younger child, as I don't remember, but as an older child I remember her spending Saturdays drinking all day. Funnily, for a stay at home mother, as a child I seemed to spend sod all time with my mum. On average she would get drunk about 4x a week. She tended to have designated drinking days, so on Wednesdays she would see her friend, spend all afternoon drinking with her, and come home drunk. I remember dreading her coming home sometimes, because I never knew what mood my mum would be in. She was mostly a sentimental drunk, but could turn contradictory, argumentative and self-pitying on a dime. Either way I didn't like her personality change.

Because my extended family are all big drinkers as well, nobody noticed my mum had a drinking problem. She herself would never admit it and would become extraordinarily angry and defensive if anyone suggested it (usually me, but once my brother and dad had a go at bringing it up, to disastrous effect). I never understood why my mum was so insanely defensive about her drinking, but I think I understand it now. I think she wanted to keep up the illusion of normality, of having a - if not happy - then at least a respectable, nice middle class family. She absolutely hates other people's pity, I know that much.

Anyway, she still drinks just as often but more slowly, so while she still gets drunk, she doesn't actually become legless anymore. But I do think so much booze over the years must have changed her brain to some extent. Well, the booze and my dad (she probably started drinking to cope with my dad).

@Poppie and Clo - You've both done well to try and bring up your children differently and break the dysfunctional family cycle. It's obviously not easy, due to the fact that so many children grow up to become parents themselves and perpetuate the dysfunctional behaviours.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1998
   Posted 12/8/2017 11:01 AM (GMT -7)   
What I realised about my Mom (and that generation) is that they would rather saw off a thumb then let the neighbours think anything was amiss. Back then that was the order of the day, hence why keeping quiet about mom/dads drinking was paramount for respectability. God only knows why people were so preoccupied with what their neighbours thought...I couldn't give a toss what my neighbours think!!

You may be correct in that drinking over a long period of time has an adverse effect on the brain.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!
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