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Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 8/30/2008 5:57 PM (GMT -6)   
Has anyone found that when first diagnosised w/ uc that family members have a difficult time accepting your diagnosis?  My husband, whom I love w/ all my heart and is a wonderful man is in denial of my disease.  He has been great this first week w/ me changing our diets, but he refuses to believe I have uc.  I suppose it's like someone being diagnosised w/ diabetes.  Has anyone else experienced this?

Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 8/30/2008 6:24 PM (GMT -6)   
Yes, my parents. They are convinced that I do not have a chronic disease and are somehow going to "cure" me.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
Lialda 4.8gm/Day
Prednisone 60mg/Day


IBD/IBS Author
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/30/2008 6:48 PM (GMT -6)   
One thing you can do is to have your loved ones join you the next time you see your doctor to have your diagnosis confirmed. Also, you can take them to ccfa.org's website and let them read the description of your disease - UC or Crohn's. Or, bring them to this site and let them browse the posts so they can realize that the disease is real and so are the symptoms, frustrations, etc.

Good luck,
Elizabeth
Dx'd with UC, 1998 & IBS, 1999
Asacol, probiotics, vits. and whole foods diet


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 8/30/2008 7:25 PM (GMT -6)   
I dont even really talk about it anymore to the people in my life because most just don't have a clue and they think it's just something that you did to yourself...like my friend the other day made the comment that I didn't take care of myself.  I was highly offended and told her that she needed to educate herself about the disease before making sweeping judgements.  Another friend of mine who I used to work with wanted me to try all of these detox programs because she thought I had a toxin buildup which was causing my symptoms.  I just nodded along and told her I would give it a shot.  The main thing is to not take what they say personally.  Those that do understand and listen are few and far between but when you encounter someone like that then you can open up and discuss the issues without feeling like you are being judged and having to explain yourself.  Maybe you can print out some of the facts from credible sites and share them with those who need convincing.  Also, keep in mind that denial is a common human reaction to something that people aren't willing to accept on some level.  Some people live in denial on several levels with various issues in their life to help cope with some type of fear that they have.  I would say give it time with him as this is all new and not something that is easily accepted at first (or ever for some people!)

 
 
__________________________________________________________________________________
- 30 y/o male residing in Northern Virginia living a fairly "normal" life at the moment
- Currently in remission
- Pancolitis since April, 2006
- Small fistula and anemic at times 
- 4 Colazal/day, multivitamin, Fish oil and Primal Defense Probiotics 2x/day
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/30/2008 7:37 PM (GMT -6)   

Some of my family and friends think that I "made up" this UC to get out of knee replacement surgery.  I am trying to get into remission long enough for my GI doc to approve the surgery.  The internal bleeding of any kind can cause problems with surgery, of course.  AND - knee replacement is elective surgery so the doc don't have to do it.

Anyway, my husband is wonderful and went to my colonoscopy report so he knows what is going on.  He has COPD and now Stage 4 lung cancer. 

Ask your family/friends if they really want to know how you are dealing with this and give them info or take them to doctor's appointment.  If they care - they will at least try to understand.  Doctors have great models and brochures.  Also, brochures online to print. I have a friend who told me she had Crohns and I had NO idea what she was going through until I read about it and diagnosed with UC.  She would tell me she never ate when traveling - I thought it was foolish stuff - boy, I know better now.  Education is the answer.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


AussieGirl
Regular Member


Date Joined Feb 2005
Total Posts : 92
   Posted 8/30/2008 8:49 PM (GMT -6)   
I agree. For some reason people have heard of Crohns but not UC. I end up telling those who I have to, that I have Crohns as it's the most easiest way. People also confuse IBD with IBS..... My elder sister is always trying to give me immune boosting herbs, vitamins and minerals, not understanding that our immune systems are too fast and need to be suppressed, not sped up even more :)
Officially diagnosed Jan 2005 with UC & anthropathy arthritis, RV Fistula April 2005
Misdiagnosed for over 20 years re the above!
 
4 DVTs and 1 PE (blood clots) Nov 2007 (caused by flare ups) 
Oesteopenia in right hip and spine (caused by pred)
 
Present meds: 6 x 750mg Colazide, 50mg 6MP, off warfarin but on stage 3 clinical drug trial Rivaroxaban
Take 1000IU Vit D, calcium, magnesium, vit C, vit B, Evening Primrose Oil 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 8/30/2008 11:47 PM (GMT -6)   
My dad seems to think I'm going to "out grow" the disease. However, that is his outlook on most things so I doubt he's in denial. I think sometimes its hard for people to wrap their minds around IBDs. But for sure education is best.
Sam 19 year old college student
Diagnosed March 2005
Remission since January/April 2006 (incident with mono)
3200mg Asacol, 25mg Amitriptlyine, Ortho Tri-cyclen lo, Imodium when I need it
"If you don't like something, change it. If you can't change it, change your attitude"
Maya Angelou


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 8/31/2008 7:14 AM (GMT -6)   
I know what you mean. My husband who is also a good man really doesn't get my illness. He understands when I am in a full blown flare and can't do much but the in between times when I have good days and bad days he doesn't get. Like I will be complaining that I am tired and my tummy is a bit dodgy and he will reply saying his is too and we must of eaten something bad.  I'm sure he probably does have a bit IBS but sometimes says things like hell I've probably got colitis too but I just get on with it which p's me off as if he really had it he would definately know all about it.  I have not had a day for a long long time where I have felt completely normal unless of course I am taking pred.

32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 8/31/2008 8:00 AM (GMT -6)   
My husband's parents don't seem to believe me. My father-in-law especially doesn't believe me. This from a man who has diabetes. I think sometimes that he thinks I'm just trying to get out of doing stuff. My family understands since my grandmother passed away from colon cancer. One of my sisters-in-law fully understands what I'm going through because we see each other regularly and she knows how active I can be when I'm healthy. My husband's aunt fully understood when I told her. She stopped me and said, "you don't need to say anymore because I know what you're going through". I didn't ask her how she came to this knowledge. A conversation for another day I guess. My mother-in-law has actually been trying to understand more. I guess what I need to do is show her some literature and explain to her that every day is different. What I ate at Thanksgiving dinner doesn't apply at the current moment. My husband is a saint. He does everything he can to keep me comfortable and happy. It's like the old saying, "when mommy aint happy then nobody happy". Very true in this house. smilewinkgrin
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Strangely I find that eating a turkey and ham sub from Subway with lots of vegis will help me come out of a flare. Why I don't know. I stay away from fats or my D will just get worse.


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 8/31/2008 10:15 AM (GMT -6)   
Thank you guys so much - I knew my husband was normal and I also know what a loving man he is. You have made me feel better and I greatly appreciate it!

jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 8/31/2008 9:39 PM (GMT -6)   
Yeah my great uncle told me how he got rid of his when he was in his early twenties, and that I can do the same. He believes I'm too nervous and need to chill. HAHAHA....if it were only that easy.
Age: 30
Sex: Yes please!
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day, Mesa rectal meds
Supplements: calcium, and multivitamin
No. of colonoscopies: 5
Last scope: 6/7/08-everything looked ok.
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 8/31/2008 9:54 PM (GMT -6)   
My Dad has the disease, but he has been in denial for the longest time. He had surgery to take his LG. intestine out, and had a reconnect so he doesn't have to have the pouch, but he is still in denial. Course I'm the other direction, I'm facing it head on, and dealing with it, I have all the support I need my Mom, and my hubby's family, and my hubby. I guess u really have to be extremly sick with this disease for the ones close to u to totally understand. Taking your hubby with u with your next appointment is a good idea so he can ask questions to the doctor to help him understand too. I did that with my hubby for a few visits. It totally helped.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/1/2008 9:24 AM (GMT -6)   

jars05,

I have to agree somewhat with your uncle.  Now being nervous does not CAUSE IBD but it can make the symptoms so much worse.  I am now on Xanax - small doses - and it helps sooooo much!  Relaxing is the best if you can!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
Colazal 1X3- discontinued for now
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Starting Rowasa nightly - discontinued for now
 
 
 
 
 
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/1/2008 12:04 PM (GMT -6)   
My mother and sister are nurses, so for them it's more of a fight about treatment then about what it is. But it is good to have their knowledge. I took my mother with me (she's 50, I'm 31) to a flex-sig procedure. My GI allowed her (welcomed her in fact) to sit in on the procedure. I have to say, for me at any other point in my life or with any other person it would have been embarrassing. But with my mother the BSN who has worked in the field for 20 years, it was extremely comforting.

So, I haven't had the problem of people accepting the limitations and agonizing discomfort of the disease, save for the VA and the Military that give me the "Fish in the meat market" look whenever I start to discuss it in common terms.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/2/2008 3:32 PM (GMT -6)   
My mother-in-law is always trying to compare her tummy aches to my disease. I wish I only had a sensitive tummy. I think my husband finally straightened her out, because she hasn't said anything lately.

Now that I think of it, my first doctor (long ago) said I was his "denial patient."
I think because I tried not to tell anyone about it.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 9/2/2008 5:14 PM (GMT -6)   
I had the same problem after dx as well. I didn't meet my husband until after 4 yrs of disease but he didn't fully understand until my first big flare a few yrs back.

The best thing i did with him was go to a ccfa conference. Here in the chicago area it is in march. There were a bunch of small seminars to choose from which explains everything from basic UC info, surgery options, pregnancy and IBD, and so much more. We have gone back every year as my disease changes. Thinking of a family this year we did pregnancy and surgery seminars. Its also a good way to meet people who are in the same boat.

Good luck!
Kelly, 30, suburbs of Chicago, IL

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion

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