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Date Joined Oct 2009
Total Posts : 66
Posted 10/2/2009 6:29 PM (GMT -7)
Hi all, just found this web site this evening and wish to introduce myself to you. My DH is 68 and has had Crohn's for approximately 43 years. He has been prednisone dependant most of this time...only a year or two off here and there. He takes Pentasa, Humira, Ranitidine, B12 injections and vitamins. He took Immuran and developed Pancreatitis. He tried Remicade soon after it was approved for use without a change in symptoms. A few years later, when they had changed the dosing protocol, the doctor had him try it again. The first one or two infusions were okay, but then he had an allergic reaction...no more Remicade. He also suffers from chronic anemia and mild diabetes.
In 2004, he had a resection, suffered a pulmonary embolisum and spent a week in ICU. The anastamosis leaked and he had a drain for several weeks. Spent a total of seven weeks in hospital. He developed an abdominal fistual in which they placed a drain. That fistual was joined by another abdominal fistula; neither of which have ever healed. His surgeon, and other docs, have said he really isn't a candidate for more surgeries and to "leave well enough alone". He was initially started on the Humira even before it was approved for Crohn's in the hope that it would heal the fistulas. No luck there, but it does reduce the fistula output.
Due to the fistulas, it is necessary that we use ostomy products. As some of you may know Medicare only wants to catch "poop" with ostomy products if it comes out of a "surgically placed stoma", so getting supplies covered has been a battle.
Crohn's has definitely been a challenge in our lives as I am sure it has been in all of yours. For many, many years, DH was the only one on both sides of our families who was "chronically ill". Not a lot of fun, but I do think it has made our immediate family closer...poorer, but closer! LOL!
I look forward to "chatting" with all of you and having a place to go to where people actually "get it"! Thanks for reading this far!
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Date Joined May 2006
Total Posts : 1177
Posted 10/2/2009 7:26 PM (GMT -7)
Rose, I'm so glad to hear from you. I am the wife of a Chronie as well . . . though he was only diagnosed last year. I must say that I have struggled with this diagnosis, and I wonder how we're going to survive all the suffering that the future probably has in store for us because of this disease. Until this disease struck, our worries were small, and our hopes so many . . . and now I just want to try to lead a somewhat normal life, and for my husband not to suffer . . . and I fear that this won't be the case given the nature of this disease. I have wondered how we're going to survive if he needs to quit working, or how we're going to manage if he needs surgery etc. since we have absolutely no family.
This disease has added so much worry and anxiety to my life, that I am going to go see the doctor about
getting on some anti-anxiety medications to get me through each day. How did you do it? We have pretty much ruled out having kids, because I am not only afraid that we'll have kids who end up with Crohn's, but also because I am worried that my husband may not be able to keep down a job because he's sick, and I'll end up having to take care of my husband and kid(s), and be the sole financial provider as well. I am still struggling with this one . . . but I definitely don't feel ready to face the challenge of facing both a chronic horrible illness, and the possibility of being both mom and sole provider, so I am at least postponing for now . . . I am still considering adoption.
How have you done it? How did you get through the tough times? How did you manage financially? It sounds like you've had a pretty rough road, and I'd love to hear more about
it, to learn from you how to lead a good life with this illness.
Has your husband tried cimzia? It is the latest of the anti-tnf agents (like Humira) - maybe it'll have more success with the fistula. I am still learning about
crohn's, so I don't have a lot of information that may help your husband. I just wanted to say hi, and to tell you that I absolutely do "get it". I'm sorry you're having trouble with medicare - it's bad enough to have to deal with such a terrible disease, it's even harder to have to argue with insurance folks to get the care that is needed. I know that I almost lost it on the phone talking to my husband's insurance, when he was in the hospital, and was having tachycardia from dehydration, and they wanted him to go home.
((((Hugs)))). This board has become my support group . . . I don't have very many people to talk to about
my husband's illness, and noone other than my husband to give me a hug when I need it . . . and this board has been soooo good to me. Without the wonderful people on this board, I definitely would not have survived this last 18 months for sure. Welcome.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life
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Date Joined Apr 2007
Total Posts : 32602
Posted 10/3/2009 2:51 PM (GMT -7)
Welcome to HealingWell and I too am the wife of a Chronie. My hubby has had Crohn's for 33 years. He has had 3 major surgeries with the last one being 18 years ago now. He has a narrowing that his GI physician was not able to pass her scope through back in June so we just wait and see.
He has been through some really tough time but we have been blessed with some really good times also. As the years have passed since his last surgery I have just adopted an attitude that we will deal with what ever happens next when it happens.
I must do this to stay out of anticipatory anxiety mode and stay in the moment. I try not to worry about
tomorrow and live today as that is truly the only moment we have.
Welcome to a great community.
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Date Joined Oct 2009
Total Posts : 66
Posted 10/3/2009 3:29 PM (GMT -7)
Hi PV! Boy, do your concerns for the future remind of my past! In DH's case looking back, he must have developed Crohn's shortly after our first year of marriage. His first hospitalization was in 1966, but then they said he had an "ulcer". In 1977, a local surgeon told us he thought DH had a malignant intestinal tumor and sent us to IU Medical Center there we learned that he actually had Crohn's. He did have a resection at that time and was in the hospital about
4 weeks. He has had two additional resections since then with the most recent being in 2004. They don't want to operate on him again.
When DH was officially diagnosed, we already had three little girls so the decision to have or not to have children was already made and I am thankful it was that way. I really think we might have had a fourth child, but like you I was fearful of what the future held and how I could possibly manage. I am sorry that you don't have family close by to offer support to you. While I have always had family close, unless you live with a chronic illness, you don't "get it"! There have always been visits and hugs, but they always have their normal lives to get back to! LOL! And that is as it should be.
Everyone has to make their own choices of course regarding having children, and I don't know the severity of your DH's disease or what path his illness will take. I don't think I could have ever ruled out having children, but everyone's situation is different. We too worried about
out daughters developing Crohn's...some believe there is a hereditary tendancy and others do not, but of course we worried about
it! There are no others in DH's family who have ever been diagnosed with Crohn's so who knows! Now that we have grandchildren, we worry about
one of them developing Crohn's...the concern never goes away I guess.
In the early years, I know I didn't want a "sick husband" and all that went with that. Money was always tight, we didn't get to do a lot of things others did. Plans were often cancelled/changed at the last moment because DH was not feeling well. He says that I raised our girls...while he was sleeping! And sometimes, I admit it felt that way. But I loved him, he loved me and we loved our girls and so we moved forward. You just take it as it comes...that's not to say you are always happy about
DH always had a decent job with good insurance and when he needed sick leaves, he took them. We always lived beneath our means so that we could manage when we had to. We didn't ever take on much debt, our kids didn't wear designer clothes, family vacations were modest. When the girls were small, DH's parents raised beef and kept our freezer stocked with meat...that always helped. Sometimes things were tough. But I will tell you this, the good always outweighed the bad! We are a strong close knit bunch and I know DH's illness is a great deal of the reason for that. "Taking care of Daddy", has in part, helped to make them all strong self-sufficient women. Even with a chronic illness and all it entails, we have been blessed!
Please don't spend your days looking too far ahead. Many of the things we worry about
never happen! (Note to Self: Re-read this paragraph periodically!) We don't have crystal balls to show us our future. We can live each day and hope that tomorrow will be as good or better or we can hide in a corner and be miserable each and every day...when all is said and done those basically are our choices.
There are so many new drugs available now to treat Crohn's which weren't available when DH was diagnosed. I know many of them have scary side effects, but lots of things in life are a trade-off. Lots of people are having good results from Remicade. DH has not tried Cimzia. His gastro talked to him about
another injectable drug a visit or two ago, I am not sure if it was Cimzia. Doctor has also brought up the possibility of DH going on artificial nutrition because he is 5'10" and weighs 130 fully clothed. But that too can offer a whole host of complications and you have to involve home health care in your life...and then there is the decision as to when do you stop? DH went on disability in 2001 at age 60. Not what he wanted, but it was time.
I, of course don't know where you live, but if I were you starting out with a Crohn's diagnosis at this point in time, I would find the best hospital/gastroenterologist in the area that I could. You need a no nonsense doctor who keeps abreast of the latest advances and who will take the time to know your individual needs. You will have to become his advocate. You will have to fight some of the battles for him. Know your insurance policy, what it covers and what it does not. DH has always been self-sufficient when it comes to taking his meds, but not all men are that way. It is important that meds are taken when they are suppose to be taken...especially when they feel well.
Being new to this board, I don't know if you can send private e-mails, but I will check it out. If so, I will send you my e-mail address. You can feel free to reach out to me at any time. We "Crohnie" wives have got to stick together! Thank you for the welcom and cyber (((Hugs))) to you!
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Date Joined Dec 2008
Total Posts : 947
Posted 10/4/2009 7:20 PM (GMT -7)
The only advise I can really offer is to take on day at a time and make the best of each day.
Don't give up the fight!!
I thank God for giving me my wonderful wife who takes care of me when needed with a smile.
((HUGS)) to you all.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009
Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium,
, Probiotics, Pepcid Complete, Questran, Monthly B-12 injections.
Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.
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