Community Forum

Hi,

My wife has Crohns, back when i first meat her in 1989 she was 17. we feal in love. a year later she lost weight and had gotten really sick. She was admitted to the hospital. I was confused on what was happening and told she was probly not going to live and she had crohns. it was a nightmare to me, I travaled 145 mjle every weekend to see her. well she fought it and lived.

We had our first son she went into remission, had our second son, mild flare up. Not much happened over the years just mild stuff, but she had no treatments.

Well over 2007 I noticed a few things but hard to afford doctores, plus most seem clueless.

well to get to my post.

I feel helpless as heck now, She has been really sick sence Nov. in and out of the hospitale, she is currently on medicaid. no gasteroligest. Think she has romitory arthritist along with it, her joints are allways swollen, she crys at night .All the doctors think she wants pain pills, wich I no is bs, as I see what hppening. I take care of her, the house, cooking, work, kids, I just wana scream. Im at a loss. the docs are dumb, the meds make her really sic. She is allways in pain, and I cant get stressed or depressed. Im trying to get her to a doc out of state, if her medicaid ever clears. Nothing I can do but watch her suffer. I could go on but its pointless. I just wanted to get some of this out, if anyone else can relate to this YOU ARE NOT ALONE. I wish you hope, stay strong, do ot let this bring you down. Take care all.

thanks

Todd

 Reply posted for andy.

I have had Crohn's for 42 years, undergo yearly colonoscopies, have blood tests quarterly, take Pentasa, Imuran, Flagyl, Entocort, folic acid, fiber and lomotil, also have prednisone for emergencies.

 Reply posted for Selena.

Has anyone had UC for along time?  How do you prevent colon cancer?  What meds are you on?

 Reply posted for dtdragon.

Dt, see if there is a Crohn's & Colitis support group near you.  If not, contact the national organization and see if they can help you start one.  I am sure there are many others around where you live who are experiencing the same thing and you never know what may come out of one meeting.  I am going to my first conference with the Crohn's & Colitis Foundation in Seattle WA next month and it gives me hope and something to look forward to.

Also remember, it is NEVER your fault.  You must get those thoughts out of your mind.  At some point in this lifetime, we will lose a pet regardless.  It isn't easy, as they are truly a member of our family. 

Be strong, you can do it and I will send prayers and healing and positive energy to your wife. 

We're here if you need to vent.  Never lose sight of that.

 Reply posted for dtdragon.

i know it must be hard to care for your wife and all of the other house hold duties.  i have seen my family go through what you are going through by trying to take care of me while i was sick.  it is alot of work and she is lucky to have you.  the only thing i can tell you is to not give up on her.  this is just as *** her as it is on you and she may feel worse that she cannot do much about it.  as a patient you feel extremely helpless also so it's difficult for everyone.  i was in a relationship when i was first diagnosed and as i was recovering things became too hard and stressful and i ended up alone, this has been harder to deal with than the recovery its self.  so please don't give up on her.   i know you may be frustrated at times but let her know you are there and that you truly care for her, believe or not it does make a difference to hear this.  

i hope this helps

 Reply posted for dtdragon.

I do know how you feel, as a spouse.  It is so hard to watch your partner in constant pain, and without successful treatment.  It is exhausting to take care of all the household responsibilities, pets, schedule appointments, drive both of us to and from work, on top of caring for your partner and watching them suffer.  Add to that the financial burden of the medical care and potential income lost.  I understand, and i am sure others do to, even though they are sometimes hard to find. 
I also know how hard it is to take care of yourself, given the circumstances.  But i want to remind you that it is so important to take care of yourself.  If you don't, you can't care for your wife.  If you do take care of yourself, it will help both of your quality of life, and will help you have the strength to keep you two going, and bring smiles to your days.  Take time to breathe and think about what IS going well (start with your will decrease, and find time and ways to enjoy each other and other loved ones.  Laughter and love are amazing healing tools!

 Reply posted for dtdragon.

I'm so sorry about your African Grey parrots.  It is so difficult losing a pet that you love so much.  I know how comforting pets can be.  How is your wife coping with one of them passing away?  I hope she is ok.  I can see how worried you are about your wife and how she is going to handle this.  She is so lucky to have your support.  I think your support will help her handle anything.  Please keep us posted.

 Reply posted for dtdragon.

Todd,

Having this disease is very difficult on our loved ones.  I have had ulcerative colits for more than 30 years.  I have been in and out of  hospitals since I was a teen. I am alive today only because of three excellent gastroenterologists who saved my life over the course of my disease with their excellent care and knowledge of this disease. 

From your post it sounds like your wife needs to see a specialist who knows how to treat this disease- a gastroenterologist (GI doc).  Is it possible to get her into to a GI clinic at a university hospital in your  area?  Check to see where the closest university hospital is in your city/state.  Medicaid should cover your wife being treated by a GI doc.  Also, CCFA should be able to help you find a GI doctor in your area if you need help.  I think you can pose questions to a CCFA professional on this web site at a different location. If you are not sure how to find a GI doc, university hospital in your area or where on the CCFA web site you can talk to a CCFA profession write back and I can try to walk you through those steps.

 Reply posted for EZ.

OMG Ive failed again, this is a nightmare. Im at a loss... Now Im scared of whats going to happen. Im not even sure why im here at this sec...   Im so,so,sad..and so extremly worried. We have 2 afrigan greys we have have sence they where 3 days old. we raised one was mine the other hers. hers got sick, we thought it was better after the vet viset, It just died 15 minets ago,feel like its my falt. It was one thing that kept her going, now he is gone Now im super concernd about her. I dont know what to do, im so sad, and worried that she is going to plumit dowm hill now. I never cry but he was family, and i faild him, now shes goingto be sicker, and i know its going to be bad. God I never get a break

Im so scared...............................

 Reply posted for dtdragon.

Your wife is so lucky to have such a caring husband as you.  It's really hard to believe how expensive the doctors, blood tests, medicine all costs.  I do worry about how my daughter will be able to afford all this in her life.  Do you have a teaching hospital in your area like in a University?  Maybe they would help your wife and hopefully medicade would be accepted there.  I hope one day my daughter finds a caring husband like you.  Good luck.