Feeling guilty

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 3/28/2008 9:00 AM (GMT -6)   
Hmm this is new for me... I have been feeling so guilty about having UC.  I know it's not my fault.  But, I feel guilty when I am sick and can't do anything.  I told my dh he would have been so much better off if he'd married a "normal" person instead of me with this stupid disease.  Is this normal?  Gee I thought by having this for so many years, I had been through everything... I guess not. sad
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08


Beachy Mom
New Member


Date Joined Mar 2008
Total Posts : 18
   Posted 3/28/2008 9:13 AM (GMT -6)   
princesscolon-
I feel guilty every day. I have 2 very active kids - son (ages 14), daughter (age 7)and a husband that travels. It bothers me to have my kids always saying "mom's sick". I would love to have my energy back. My husband has been great through it all. But guilt...... I have it every day.
Just "Beachy"


eliztopp
Regular Member


Date Joined Feb 2008
Total Posts : 46
   Posted 3/28/2008 10:28 AM (GMT -6)   
I feel the same way. It is difficult to know how much this effects you and can bring you down let alone what your family and friends go though as well. I feel guilty when I'm in a flare or having a bad day and I ask my boyfriend or mom to "take care of me". I just told my boyfriend last night that I was sorry to have UC and that our relationship has basicly been centered around this since I was dx when we had only been dating almost a year (but i had been really sick for months before that) and it is just hard when my family rearranged their schdules when I was in the hospital for a week in Jan so that I didn't have to be alone as much. It is so great, but i feel guilty that not only can i not lead a "normal" life but they can't eaither. I love them all to death and am so greatful for them, but sometimes i just feel that i make their life so much more difficult and its uncessary!
 
{[lizzielu]}
age 20, diagnosed december 2006
meds: Asacol 400mg 4 pills 3x a day; 6-mp 75 mg; iron supplament; one-a-day; protonix; prednisone 15mg (tapper, down from 40mg started 1/1/08)
low residue diet
Remicade????-- if i can't get off of the pred.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 3/28/2008 10:44 AM (GMT -6)   
I have been having this same problem. I haven't been able to work and while we can get by on DH's salary it's very stressful for us both. I usually hold up well emotionally and have a good outlook. I am ok withhow this DD affects me but not with the strain it puts on others. I love my husband more than anything and often feel he doesn't deserve this. Luckily he is so great and always makes me feel better. But i know how much he hates his job and won't look for a new one in fear of losing health benefits, he wants to open a business but can't until i can get work again and get group health. I know i am holding him back and it eats me up. The best way i have found to deal with this is two fold. I talk to my husband alot about it. It makes him feel better to know how i feel every moment of the day and in return he lets me know how it makes him feel. second i do as many little things for him as i can. making him a sandwich for lunch, having his favorite beer in the fridge. anything that i know will put a smile on his face. Its hard and I just keep reminding myself that this disease has ups and downs. It will go up again and things will get much closer to "normal"
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/28/2008 12:20 PM (GMT -6)   
I am the type of person that doesn't like to ask for help. Mainly because if I do, I feel guilty for asking! I am slowly learning by having my kids do small things for me but I still feel a tad guilty if I ask my hubby to do something. I feel that I stay at home all day while he works that I SHOULD be able to do it all. It's irrational to feel that way and my hubby has even told me numerous times that if I should ever need help for ANYTHING to ask him. That it's perfectly ok - he's such a good man! I still feel bad for doing it though but the rational side of me says that I am only ONE person and a sick one at that - that I CAN'T do it all. After I was diagnosed, I asked my hubby if he minds being with a dysfunctional wife and does he want to trade me in for a newer better model - his reply was that he wouldn't trade me for the world and whatever I am going thru so is he. That we can get thru this together.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2008 12:40 PM (GMT -6)   
I was just saying those kinds of things to my husband a couple of weeks ago.......I was real down, knowing that we would have to put off having a family for at least another year b/c of my kidney disease. I was like you sure got stuck with a defective wife, are you sure you don't want to trade me in. He thought I was nuts, and was like no way.

I try to deal w/it the best I can and not let it rule my life or his (as much as I can).
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 3/28/2008 12:48 PM (GMT -6)   
My husband and I joke that he definitely got me on the downhill slope ; ) When we got married, I was athletic and very active, always up for anything. Now I have to spend a lot of time resting and our life is pretty different. He is so sweet and takes wonderful care of me, I couldn't be luckier. But I do feel guilty about this burden I've put on him, especially as we are hoping to get pregnant in the next few years and my latest flare has put that dream on hold for the near future.
-currently having a flare
-prednisone , rowasa enema, Lialda (4 pills 1 time a day), canasa, probiotic, multivitamin, calcium with vitamin d, iron


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/28/2008 6:22 PM (GMT -6)   
I have had the 'are you sure you don't want to trade me in for a newer model' conversation with my BF MANY times and he looks at me like I am crazy. He is laid back and enjoys vegging out more than me. I always feel guilty vegging out because when I do have energy I feel like I have to play catch up with chores, etc. I don't know how our guys do it. I knew he was a keeper when we started dating and I would be stuck in the bathroom with D...he didn't crack jokes or make me feel awkward. He would ask every so often if I needed anything..drink,book..etc. What a thrilling girlfriend I am ..haha.
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/28/2008 11:32 PM (GMT -6)   
Feelings of guilt are natural for anyone suffering with a chronic illness...it's important to remember not to be too hard on yourself when these feelings hit because if you let it control you (whinning about being sick to others constantly and having continuous self-pity) that's what will people will really grow tired of...it's not necessarily how disfunctional the disease can make you (make you feel as well) it's your perspective on it and on yourself that can be disfunctioning if you let it....and then you're letting the disease win.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/29/2008 9:48 AM (GMT -6)   
When I was at the worst of my flare and DH was having to do everything around the house, I felt guilty about him having to take on the whole load. I don't recall ever feeling guilty about being sick, but I am just in awe of how supportive and loving he is. I try every day to do some little thing to return the blessings he's given me.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 3/29/2008 10:04 AM (GMT -6)   
Me too. I apologize to my hubby all the time for being sick, and the guilt is horrible. But I think my hubby gets kinda angry. His position is we are a team, and we are here to help each other out....til death. I think he views my telling him he deserves better as a sign that he isn't strong enough to deal with this whole disease. Now, if I am really feeling down, I write it all down....everything. My fears and guilt and he can read it and think about it and then we talk about it calmly and lovingly. Our significan others are really the best.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


quincy
Elite Member


Date Joined May 2003
Total Posts : 30674
   Posted 3/29/2008 11:11 AM (GMT -6)   
I think I was born feeling guilty...lol! Therapy did help that aspect...and I'm still married after 29 years..so, something is working.
Definitely counterproductive.

I'm in my most stressful/anxious time of year...Spring...and definitely feeling it. It definitely takes energy to change my perspective and look forward to the stuff I have to/want to do rather than dread it.

I know my limitations....but do tend to stretch/leap. Feels good, but with leapin always comes change..so, I get caught in the cycle of guilt if I don't continue.

I've learned that understanding/finding boundaries and not feeling responsible for everything helps to lessen the guilt. It's not with everything...but those of us who feel it tend to fixate on that.

The big picture perspective and objective options always is good to add to the mix......but dang...that takes so much energy..haha.

Well, back to my happy place....groan!

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Supernurse
Regular Member


Date Joined Aug 2006
Total Posts : 96
   Posted 3/31/2008 12:16 PM (GMT -6)   
I also feel terribly guilty at having UC. My husband and I had lived together for a long time, and he actually asked me to marry him 2 years after I was diagnosed, so I know deep down that he accepts me "warts and all". But that dosn't take the feelings of guilt away, especially if we have to cancel a night out because I feel unwell. But then as he says, the marriage vows say in sickness, and in health.........I know I am lucky to have such an understanding husband.
Does anyone else ever think " I must have done something wrong to have been given this awful disease" ? I've gone through periods of feeling like that........what did I do to deserve this ?
Diagnosed May 2005- left sided UC.Diagnosed with iritis in my Right eye March 2007
On Pentasa 8 tabs a day
Also on Pentasa enemas one daily to treat current flare.

Plus Aloe vera, probiotics, multi vits, turmeric,bromelain.


ddneilson
Regular Member


Date Joined Mar 2008
Total Posts : 21
   Posted 3/31/2008 12:44 PM (GMT -6)   
I think that everyone with an SO and one of these bowel diseases feels guilty to some extent. I lost count of the number of times that we've had to cancel plans, or just couldn't leave the house, over the last 5 years just because of me. For me, I find that the negative feelings (guilt leads to stress in my case) just tend to make things worse, so I try to just roll with the punches; it's not ideal but, ya make due with what you've got.
Universal Colitis since 09/2003
Current Meds:
Asacol (1200mg 2x daily), [occationally alternate Asacol with Pentasa]
Prednisone (15mg, tapering),
Calcium Supplement,
Multivitamin


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 3/31/2008 12:55 PM (GMT -6)   
My husband said the same thing about "Do you wish you married someone else" or "if I want to trade for a better model " etc.  He feels guilty because we got married in April 07, didn't go on a honeymoon because he spent the day after the wedding curled up in a ball on the couch in pain.  His flare started as soon as he moved into our new house in Feb 07 and UC basically ruined our first year of marriage.  He ended up breaking his arm because of water retention in his legs and the high dose of prednisone.  I had to help him up the stairs every night and put his shoes on (he's 28).  He ended up on disability because he was too sick to work or do any chores.  He was so depressed.
 
I would think it is completely normal to feel down about this disease. Our light at the end of the tunnel came when he had to have his colon removed in emergency surgery because it was about to perforate. 

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 3/31/2008 1:10 PM (GMT -6)   
Supernurse- I never think that i must have done something wrong to have gotten this DD but i do ask how did i get so lucky to get the husband and family i have!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.

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