IBD and the immediate family

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Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/28/2010 8:46 PM (GMT -6)   
My father was just admitted to the hospital this past Sunday due to throwing up blood. I called the hospital and the nurse told me his esophagus was inflamed. I did some research and found out one of the causes could be Crohn's disease as it can show up anywhere from the month down to the colon, so I called back to let the nurse know that I was recently diagnosed with IBD/UC and learned that Crohn's could be a cause.

She immediately dismissed this due to his age (88 years old) and "there was no blood in the stools". I also mentioned that my dad never had a colonoscopy. My mom doesn't believe in colonoscopies and refuses to get one done for herself.

I would think that if a close family member had and IBD that this would change the protocol for diagnosing immediate family members with GI problems.

I just spoke to my mom and the doc ruled out a lower GI because "there was no blood in the stools". I doubt my mom even mentioned my IBD to the doctors. My family is still in denial that this is genetic as so far I'm the only one in my family that has been diagnosed. I'm thinking possibly others were just mis-diagnosed as there were family members with "other" GI issues. I starting to understand just how little doctor really know about IBD. My co-workers husband was recently diagnosed with Crohn's through his normal preventative colonoscopy. He didn't have any symptoms...they just found spotty inflammation in his colon. The doc said he probably had a flare when he was younger and it just came back.

Am I just over reacting or should the docs take this more seriously and do a colonoscopy just to be safe? How does your doc react to GI problems with your immediate family member?
41 year old female Accountant, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 2x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Calcium + Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

mkl11
Veteran Member


Date Joined Jul 2007
Total Posts : 521
   Posted 12/29/2010 12:10 AM (GMT -6)   
It's so frustrating to just be dismissed like that. I can't offer much except that my uncle was admitted to the hospital for the same thing last week, and it was not IBD and instead an ulcer of some sort. Similarly my 93 year old grandfather was admitted for the same symptoms two months ago (and had blood in his stool..i think) and I believe the diagnosis was something GERD related. Both are fine and doing well today (also they aren't blood related), so I believe this symptom has many more common causes than IBD, but that's just based on my own very biased experience.

That said, you have the right to try to push what you feel is best--perhaps that means getting another opinion or further pushing for testing. Do what you're comfortable with and what's in your gut--naturally it feels better to go with safe than sorry, especially when you yourself have a chronic illness.

I hope he gets well soon and you get the answers you want!
22 y/o graduate student

(Mis)diagnosed with Crohn's June 2007, (Quasi)diagnosed with UC and IBS August 2010
Flare since March 2010
Currently: Lialda (4.8g), Folic Acid, Vitamin D, Ferrous Sulfate, Fiber Supplement, B12 injections monthly
Previously: Imuran (Allergic), Asacol, Prednisone, Remicade, Humira, Canasa

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/29/2010 11:16 AM (GMT -6)   
I'm sorry to hear that your father is in the hospital. Are you over reacting? Maybe just a tad....the reason I say this is because you said your father is 88 years old. When people get to be that age, things just go bad with the body. It's the fact of life unfortunately. However, doctors would probably take a family history of IBD a bit more seriously if he was younger. When people get to a certain age, it seems doctors tend to give up or just not care as much. I found this out with my Gma.....yes she has blood in her urine, but she's 90 years old....yes she has an aortic aneurysm, but she's 90 years old......and so on and so on - frustrating for sure because you want them to be taken seriously, you want them to get better, you want them healed....

Having a colonoscopy is rough, but it is rougher on the geriatric crowd. You have to weigh the pros and cons of your father having such a procedure. It may be that he just has the inflammed esophagus due to years of acid reflux or it is just giving out on him and nothing to do with an IBD. If he has no other symptoms associated with IBD, would you really want to put him thru that?
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 12/29/2010 11:29 AM (GMT -6)   
I tend to agree with Sherry. If they know his esophagus is inflamed, does that mean they did an endoscopy? If so, I'd imagine they'd notice if it looks like typical Crohn's-type inflammation, or inflammation due to some other cause.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 12/29/2010 12:14 PM (GMT -6)   
Endoscopy should be first thing I would think.
Does your dad have reflux? Damage to the esophagus can be great if it continues without treatment.

The other thing I ws thinking is varices... Does your dad have any liver problems?

I've never thought to jump to CD as initial diagnosis.

Keep us posted as to what tests, results, etc.

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/29/2010 12:19 PM (GMT -6)   
Thanks for the replies. I know he's 88...what could I expect them to do?

I just want to make sure he gets the right treatment to make life more comfortable for him. His quality of life has really gone down the hill due to his eyes, hearing, and heart. He's been through several major surgeries in his life time. Jut had a pace maker put in this year on my b-day! Had GI issue before I was born too.

My family doesn't take my illness seriously especially when I mention the genetic connection found by research. I just want them to take the proper precautions, learn about this to not be blind sided like I was! ...but some people like living in ignorance. Guess I just care too much! My sister alone thinks it will be my own fault if I lose my colon due to lack of understanding and willingness to understand! Talking to them about this is like talking to a brick wall. I tried to explain things but it just blows up in my face and I got blamed for upsetting the family! Guess I'm jealous of people who have family member with this..at least they get some support. I just get ignored by family members and now nurses! shakehead
41 year old female Accountant, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 2x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Calcium + Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 12/29/2010 12:22 PM (GMT -6)   
Well, don't make it about you...sometimes that can blind you to all the options.

Your dad seems to have lots of health problems...hope the docs do the pertinent testing. Is he on reflux meds?
What meds exactly is he on? and for what?

It's sad his health is declining, especially his sight and hearing...that all is connections to people. What's going on with his heart? Does he have congestive heart failure?

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 12/29/2010 2:36 PM (GMT -6)   
It is hard dealing with people who don't' want to understand. It's also hard to let it go if they don't want to listen or understand even harder if it's your family especially since your family is suppose to be your support system. UC is apart of our lives and we can't just brush it off, but some people as they get older are just set in their ways and I know a lot of people who are stubborn in that same kind of area. You just can't change who they are, you just have to accept them as they are and not stress the point about this one thing and just enjoy the time you've got with them. Sorry to hear that your Dad is in the hospital, I hope the doctors can figure out what's exactly wrong with him.
28 year old, Married, Female. Moved from Sacramento, California to Arizona July 5th, 2010
Diagnosed with UC since March 2007

Humira since of May 2007 (Currently in remission since May 2007 with minor yearly flares)
Prescribed Imuran from May 2007 to Jan. 15, 2009
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.

Flares:
*May '08- July '08 *Mid June '09 - Aug. 21, 2009 *March 16th, 2010 - Beginning of Aug. 2010

thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 12/29/2010 4:48 PM (GMT -6)   
So sorry you dad is not doing well. It is tough as a child to see our parents quality of life decrease. I do think that the nurse should have taken the time to explain more and talk to you about his condition. It sounds like he has multiple issues going on and sometimes diagnostic tests such as a colonoscopy are more stressful to an elderly patient than they are helpful. Age and general health does play into the decisions physcians make. As you stated UC or other GI issues may run in your family but it is very unlikely (although not unheard of) to develop UC or Crohns at the age of 88. Due to the fact that the odds of developing UC and Crohns are very low for an 88 year old, his advanced age, and his general poor health conditions they most likely do not want to put him through a colonoscopy. Again sorry to hear you are dealing with this on top of not getting much support from your family related to your own UC.
Dx 2006 right after the birth of my daughter
Just had baby #2!
Apriso 4 daily
Imuran

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/29/2010 5:05 PM (GMT -6)   
I'm trying not to make it about me. As a family it's all about "us". I'm also part of the family and they need to accept me AND my UC. It's kinda attached..can't just get ride of it or hide it in a closet somewhere....lol. If not I'll just need to move on...you can't change people and it's not worth it for me to stress over.

Anyway dad's back in ICU so I'll be spending my New Years in the hospital. The bleeding returned and they took him down to locate where it's coming from....sounds like he sprung another leek. He's on blood thinners so I know that doesn't help!

It funny even thought he's 88 I beat him in the number of medications/supplements I take a day compared to him!
I just want him to be comfortable. It's ok if he goes. He had a good long life. He deserves better than this world!

thanks for your thought!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3648
   Posted 12/29/2010 5:39 PM (GMT -6)   
Peace&H - I am so sorry you are having all this with your father! Illness is a family member... never fun.

I don't blame you for wanting to know if he might have IBD, - would be good to know, family medical history wise, but... I'm not sure it will help him a whole lot; the first thing would be to stop this bleeding.

Are you the family GI expert? I am, for my family (and the colonoscopy coach for all my friends - lol!) But seriously, I bet your UC experience puts you in a better place to understand a lot of the terms and issues better than some other family members.

Hang in there and keep us posted. Hospitals and holidays aren't fun - been there, done that.
Co-Moderator, UC Forum
Age 54. Diagnosed UP 1983, UC 1986
Asacol - back to 16 pills/day,
Tapering enemas: Rowasa, Cortenema.
Metamucil - 2 doses/day
VSL#3DS and other probiotics, Multivitamin, Calcium and D
homemade yogurt each day
doing well!
Son, 17, dx pancolitis 2007, in remission

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/29/2010 8:34 PM (GMT -6)   
Well what do you know! My mom called...dad is having a colonoscopy tomorrow! Now that's a sigh of relief!

It's good to see that the doctor are being thorough! They must have not been able to detect from where the blood was coming. It wasn't mentioned to me where the blood was coming out and I didn't ask...so either they took me seriously or this is the "normal" protocol for such events!

Hopefully we'll get an answer. It better than hanging in limbo!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 12/30/2010 1:50 AM (GMT -6)   
Interesting and it seems your insistence has weight.

I would be concerned about varices, which can happen anywhere in the digestive tract...get a copy of the report from the doc as well as copied from the other tests your dad had done.

Keep us posted.

Regarding not making it personal...I meant your comments about accepting you have UC, etc. Not meaning that your push for tests wasn't appropriate. All ends should be covered.

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/30/2010 10:00 AM (GMT -6)   
Thanks for the clarification q! I've have a LONG history of these types of problems with my sister..this is no big surprise. I try to correct her but she take everything personally and then blames me for upsetting her! Wish she would just grow up!

Not sure I can get copied of his medical records.

Apparently my mom has control over that! There were times I called the hospital to find out my dad's condition and had staff member tell me they can only release the information to my mom and I call the hospital because I can't reach my mom! They needed my mom written approval to release it to me! Gotta love those HIPPA laws! Tend to depend on who answers the phone sometimes!

I wouldn't say it was my insistence. I just provided them with the information the 1st time and told them I at least want to make sure they have all the information so they can make the best decisions as I don't want him misdiagnosed. If they didn't consider it and he was misdiagnosed that could lead to malpractice suit!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 12/30/2010 1:54 PM (GMT -6)   
I don't mean records, I mean copies of the results from specific tests. You could ask your mom if she'd request that. Be clear in what you want...not the records. At least you'll know what tests were done and what the outcome of them are.
 
Regarding your issues with your sister...they're far deeper and probably come up more than just with UC.  Some people aren't supportive for various reasons..you might want to just ask her one day and not be confrontational...just needing to know so that the air can be cleared.  It doesn't matter if she understands UC...but do you understand where she's coming from?

Keep us posted.

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/31/2010 9:08 AM (GMT -6)   
Well I got to see my dad yesterday and talk with the nurse.

Apparently my condition had no impact. The colonoscopy was done as he started to bleed from the rectum. They went in but couldn't find the source. I'm not sure how far up they want. My mom mentioned that they didn't have his permission to go far up as he was put out during the procedure. Guess going further up was an after thought. No biopsies taken...the nurse said there was "no need". I was told the bleeding normally goes away on it's own. Sometimes that the case with us too!

Not very comfortable with this but you would think the medical staff would know best. Guess I'm just making a big thing out of nothing.

As for my sister, q. Been there and done that. Sometime you just gotta accept what is. Thanks for the advice. It's just good to get the support.

Thanks everyone!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 12/31/2010 12:39 PM (GMT -6)   
That sucks that they couldn't find what it was....Hope his bleeding doesn't continue, however.

Was he possibly on dosages of ibuprofen previously?

Was the blood bright red or dark?

too bad about your sister....but some siblings are just better off to not be together when raw emotions rule the relationship.

Hope you get more answers regarding your dad.

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 12/31/2010 1:00 PM (GMT -6)   
I'm also so sorry about your Dad. Back to the orginal question-when my daughter had some problems, because my me, she had to indure all those wonderful tests. I felt so bad cause she is only in her 20's. My doctors literally did not live ny stone unturned. I guess because of your Dad's age they are being more conservative.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 12/31/2010 6:40 PM (GMT -6)   
Finally got to talk with the GI doc today. They know for certain that the blood was coming from his lower colon as there was some dried blood still present but with seeing the active bleeding they ere unable to locate the course. His colon seem to get clearing the further they went in. I was assured this was not IBD. Could have been some internal hemrroids or exposed capilaries.

My dad was also taking coumadin AND aspirin for several year at the same time. He's off the coumadin now. Don't think he can take that anymore. I also asked my mom to asked about the aspirin too as this an also cause bleeding.

Well at least I'm relieve it's not IBD.... would still be better knowing for sure where the leak was but sometimes the body just heals itself...which is a good thing!
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/1/2011 3:05 AM (GMT -6)   
Good news regarding that. Did the doc take any biopsies?

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; Symbicort/Airomir (asthma)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4000 IU
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1144
   Posted 1/1/2011 8:34 AM (GMT -6)   
No Biospies taken. Was told there was no need.
41 year old female, diagnosed July 2010
flaring as of 10/15/2010,
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily
Asacol oral 2 pills 3x daily - due to tolerance level
Folic Acid 1 mg daily / Probotics / Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramp
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