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Crohn's Disease Forum » Your Story » Emotional Support For Wife Of Crohn's Patient


05-12-2014, 05:21 PM   #1
sandboy
 
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Location: Rathdrum, Idaho

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Emotional Support For Wife Of Crohn's Patient

Hello to all, Sorry if this in in the wrong forum. I was just reading some of the comments of Crohn's patients on what to say and what NOT to say. I am the wife of a 76 year old husband who has Crohn's disease since age 22 when he had a small bowel resection. He was not given a diagnosis of a long life but I guess he fooled the docs! BUT it has been a miserable 56 years for him and an emotional roller coaster for both of us. I love my husband but sometimes the well is dry. It is very hard to live with this disease for him and for me. I did benefit from reading some of your comments on what to say and what not to say. I would marry him all over again because in spite of this disease and the emotional up and downs, he is a great husband. I look forward to being on the forum and reading about your experiences. He just keeps losing weight and nothing seems to help anymore. Colonoscopy normal as well as all blood work. He was unable to take Imuran, felt much worse on that!
05-12-2014, 05:26 PM   #2
theOcean
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We actually have a support section here for spouses of Crohn's patients! You might want to post there and talk to others for support, too.

Crohn's is a terrible illness, but I've always been told that it affects quality of life, not quantity. So hopefully your husband should still be around for a long time. It's also incredibly sweet, and very heartening as a person with Crohn's to hear that you would marry your husband all over again despite his illness. I'm sure you've been a wonderful support to him all this time.

That he felt worse on Imuran isn't too abnormal -- a lot of people seem to have issues with immunosuppressants, though I've noticed that if people push through the first week most of the side-effects seem to go away. What is your husband being treated with now, and what has he tried before?
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-12-2014, 05:34 PM   #3
sandboy
 
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He is not currently on any medication to prevent inflammation. He takes questran to slow diarrhea, jus finished a run of prednisone. He is called, "Prednisone dependent" by his GI doc. The VA wanted him to try Remicade last year but after reading the side effects, he refused. I am a retired RN and try to learn all I can on this disease as the internet( Mayo Clinic) is a great resource but your boards may turn out to be the best resource. Only those who have been there really know.
05-12-2014, 05:42 PM   #4
theOcean
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I've seen prednisone dependency for a few members of this forum, so there are definitely people who can relate to your husband's situation.

That's unfortunate about the Remicade, though. I can understand why he'd reject it, but it really has all the same risks as Imuran did. If he does want to try a biologic, Humira is much less likely to have side-effects since it's human protein rather than Remicade with its mouse protein. Cimzia is also one that has less risks.

Personally, I've been treated with combinations of Remicade/Imuran and Humira/Imuran (so even more of a risk for me) but I haven't actually had any problems or complications because of it, and now I'm comfortably in remission.
05-12-2014, 09:24 PM   #5
nogutsnoglory
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I'm so sorry to hear of him suffering for so many years and the impact it has had on your marriage. This is a great place for support and we have many spouses and caretakers among our membership.

It sounds like he really could benefit from medication. Yes, the side effects are scary but isn't living like this scary and awful too? Sometimes it's worth the risk as so many lives have been changed for the better.
05-12-2014, 09:28 PM   #6
Jmrogers4
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Welcome Sandboy and fellow Idahoan,
My hubby and son both have crohn's. My hubby was diagnosed when he was 25 over 20 years ago so certainly has not been as long as your hubby and my son was diagnosed when he was 10 and will be 15 in July. My hubby takes Imuran and has been on it for about 12 years with great results but it did not work as well for my son and did not fully control his Crohn's he is on remicade now and is back to the boy I remember before diagnosis so for us remicade has given him his life back and allowed him to be a regular teenage boy.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
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