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sickRN
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 10/21/2008 2:33 AM (GMT -6)   
I'm 28 years old. I was diagnosed when I was 14 (but sick without knowing why since 12). It seems as though my mother is the only one who really understands when I am not feeling well. I got married to a wonderful man about 7 mos ago. He knew all about my condition before we got married and seemed to be very understanding. Lately, especially with my last flare, he doesn't seem to be as supportive. He tells me that he's there for me, but I don't feel it. Whenever I tell him that I'm not feeling well he says "but you'll be OK right?" Last monday I began my Remicade infusions. I was scared to death. All he kept telling me was don't worry, you'll be fine. I know he feels that telling me everything will be ok is good enough, but its not. I don't know if he's trying to convince himself? This only stresses me out which makes me feel worse. Any advise?

kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/21/2008 3:05 AM (GMT -6)   
yes, i have advice.... he is worried sick and doesnt know how to express it. i talked to my hubby about it when he said the same sort of thing. its like he is saying it in question form and hopes for a good answer. my dad is same way. they have a hard time with the ones they love being in pain or sick etc...
my hubby told me that he used to (and still does) calls me all the time during the day just in the hopes that i might for once say ' i feel okay'. it kills him inside that i feel so awful and he can do nothing about it. he feels helpless.

him telling you to not worry and you'll be fine is like an affirmation of sorts and i guess rationalises to him that you will be okay.

hope that helps you a bit.
steph - 32 - female - gold coast australia - UC since 2000
severe UC in descending colon and sigmoid colon ONLY
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
prednisolone 25mg x1 a day (ick ick and did i say ick?)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
tumeric capsules - if i remember to take the bloody things.
i still eat what i want, when i want, if i feel like eating at all :(
 
 
 


sickRN
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 10/21/2008 3:30 AM (GMT -6)   
That does help. I know he cares. And to make things worse his mother passed away about a 2 years ago from colon cancer. He never likes to talk about it. I wish he did. I know he's scared. But so am I.

Female
Age 28
Newlywed
Meds: Remicade, Lialda, Rowasa, Cortifoam, Folic Acid, Imodium (my best friend)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/21/2008 3:36 AM (GMT -6)   
yeah, put yourself in his position. if someone you loved was super sick and feeling awful and you couldnt do a darn thing about it. must feel helpless. we are on the other side of the fence by being the sick one. dont be too upset. im sure he is just feeling helpless like we would in the same position.
my grandma just passed from breast cancer that spread and my whole family couldnt do anything but sit there feeling awful that she felt awful. it sucks from all perspectives.
just let him love you. and maybe tell him you need to hear it more and it would make you feel better. im sure he would do anything to help.
steph - 32 - female - gold coast australia - UC since 2000
severe UC in descending colon and sigmoid colon ONLY
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
prednisolone 25mg x1 a day (ick ick and did i say ick?)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
tumeric capsules - if i remember to take the bloody things.
i still eat what i want, when i want, if i feel like eating at all :(
 
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/21/2008 7:04 AM (GMT -6)   
Steph is so right. He is worried sick and feeling helpless. He is doing what he feels he can but I bet he is insecure because he doesn't feel he can do enough. When I first diagnosed, my hubby and I both cried together. He has told me that he feels bad when I do because he can't do anything to take the pain away. He has told me numerous times that if he could trade places with me, he would do it in a heartbeat. But even though he tries to do little things for me when I am sick, he can never truly understand nor do I expect him to. He is healthy and no healthy person can ever relate to us unless they are in our situation one day. Just take comfort in knowing that he cares for you and if he can't understand completely that is ok too. But in the meantime, come here as often as you want because we CAN relate to what you are going thru.
 @--->--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**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30976
   Posted 10/21/2008 8:22 AM (GMT -6)   
aside what's been said already...have you actually asked him how he feels?
that might help open communication.

Welcome to the forum!

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/21/2008 8:28 AM (GMT -6)   
hey SickRN,

My husband lost his mother 5 years ago and they were super close, it was very difficult as I am sure it must be for everyone who loses someone. I think it is that my husband just cannot imagine that I will not be ok and that he will lose me. I will be ok but he does not understand that just b/c I am not dying does not mean that there are points where I feel like I am.

I have found with him it's best if I just sit him down and explain it to him. I found out my last flare up that I really did not tell him much, I tried to handle it all on my own and expected him to know how I felt, when we talked about it I was just very matter of fact about it and explained it the best I could. He's a very optomistic person, I consider myself realisitic.

You can get through this, you just need to find a way to communicate to eachother your feelings and needs.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
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 09/07. Close to remission since 9/08.
Prednisone 2.5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 10/21/2008 8:46 AM (GMT -6)   
My husband is super supportive and always lets me know we're in this together.  But part of having married someone who is so caring is that he sometimes feels helpless against this disease and wishes he could help me-I totally agree with the other posters here.  One thing that has really helped me to remember this is to see a therapist during bad flares if I can-she helps me see things from his point of view and also gives me an outside opinion on what is going on with me (without being invested the way a spouse or family is).  It helps to have someone else to vent to and to remind me how, though having colitis is terrible, I have many other blessings in my life, including a husband who only wants the best for me.  This is something you may want to consider if you can swing it or your insurance covers it.  I have found therapy really helps me through those rough times.
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/21/2008 9:43 AM (GMT -6)   
Also, remember the differences in the way men and women communicate. When we vent to them, we're relieving stress and just need them to listen. Almost all men receive this as our wanting them to solve the problem, when that isn't what we want. On the other hand, when they tell us about a problem, we tend to think they're venting and we just listen, when often they want our input on a solution. Your husband doesn't have any solutions to offer, so he feels helpless.

Took my husband and I 25 years to understand this dynamic. Once we did, it made things a lot easier for us.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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