Crohn's Disease Forum » Your Story » Advice for a struggling caregiver...

05-13-2012, 08:29 PM   #1
New Member
Join Date: May 2012
Location: Long Prairie, Minnesota
Advice for a struggling caregiver...

Nurse-Wife, the loving nickname my husband gave me after over a year of me trying to take care of him during his severe illnesses. I am under 30 years old and my husband and I have been married over 5 years. We don't fit into any category, but he has many GI issues, so I thought this might be a good place to get some advice and support.

The backstory: My husband was mis-diagnosed with a rare autoimmune disease in January of 2010. This started a sequence of events that doctors have since referred to as "a series of unfortunate events" and "the perfect storm." After a month of being on immune suppressants and steroids (to cure what we now know was just a small ulcer) he had a bad reaction to the medication and he developed a severe infection which required hospitalization. The doctors though it was strep throat and pumped him full of antibiotics and more steroids. He was unable to eat, drink, talk, or sleep for over a week. His liver shut down and he had only had 200 white blood cells. We transferred him to another hospital where we found out that he did not have strep throat, but candida, a fungal infection. He also had aspiration pneumonia. The fungus ended up destroying 2/3rd of his esophagus and killing his ascending colon. He had emergency surgery and was given an illeostomy. We were in the hospital a total of 6 weeks that time.

After being released from the hospital, my husband had a feeding tube and had to relearn how to swallow and talk. We also had to travel to the hospital 1-2 times a week for dilatations to the esophagus just to keep his throat open enough to be able to eat and drink. His esophagus ended up perforating and they put in a stint for 4 weeks. All of that time he was hospitalized due to extreme pain. After the stint was taken out his esophagus it had to heal for another month before we could get finally get a surgery that would hopefully be a long term solution.

The Surgery: My husband had a Iver-Lewis, which removed 2/3rd of his damaged esophagus, made a tube from the stomach which now send the food immediately into the small intestines. He was also able to reverse the illeostomy! We are very thankful for this possibility of returning to some semblance of normal.

The Problem: All of this has made it so that my husband has been on extremely high doses of Dilaudid for 15 months. He was able to ween off the daily medication, but now is going in to the ER every 2-5 days for multiple shots of IV Dilaudid because of extreme pain, nausea, gas, and bloating. The CT scans, blood work and X-rays always come back normal. No doctor can give of a firm diagnosis of what is causing the pain. This leads me to do my own research and I believe he may have Narcotic Bowel Syndrome. I have done a lot of research and we're going to see pain specialist this week. I don't understand the pain and I think the pain meds are making him worse. How can I make him feel supported? I have been making most of his care decisions and taking care of the house needs for over a year, how do I stand aside and allow him to do something that may be making him worse? What do I do next? This issue is causing extreme tension in our marriage. Does anyone have any alternative (not marijuana) pain management ideas we can try? Other advice. Thanks for your help.

05-24-2012, 04:08 PM   #2
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ThatsWhatSheSaid's Avatar
Join Date: May 2012
Location: Wisconsin

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Wow I am so sorry to hear about this. As far as pain management...ask about Tramadol. It's synthetic but mimics opiods. Because it is synthetic, it does not have the addiction rates that other painkillers do. Even transitioning to something like that may help to see if after the transition has occurred if he is still having pain (in which case, the pain most likely would not be from the painkillers). Cymbalta is an antidepressant also used for certain types of pain (which I don't think he would fall under, but don't know his whole story). I was really skeptical about this drug, but my fiance is on it for arthritic back pain and has seen a world of difference. If it is an addiction, there may be value in talking to the doctor about also incorporating an anti-anxiety medicine which will reduce the withdrawal/rebound effects and make it easier to get off the medicine. I don't know if any of this helps. I wish you the best of luck. Also, I understand how difficult it can be. It sounds like you are a wonderful wife and he is lucky to have you. Continue to be patient- for both of you.
05-31-2012, 11:03 PM   #3
New Member
Join Date: May 2012
Location: Long Prairie, Minnesota

Thanks for posting a reply. After many days of not receiving one I was worried I was out in left field. I will ask our Dr. about these options. Thanks also for your words of encouragement. I will do my best to stay patient with him. I will never be able to understand all he's been through.

06-01-2012, 12:19 AM   #4
Jessi's Avatar
Join Date: Jul 2011
Location: Ogden, Utah

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Oh, sweetie, I am so sorry that this post was somehow swept under the rug.

I have been absent from the forum for quite some time due to my hubby going through something very similar to yours.

He had a 7 mm kidney stone lodged in his ureter that stayed put for 2 months. It took 3 surgeries, a stent, and massive doses of dilaudid to get us through this treacherous time. I do understand a bit of what you're going through.

If you're still searching out an alternative to pain killers, I just wanted to suggest that acupuncture could help him. Personally, I have never done it for my own disease, but I hear many claims that it works wonders.

I hope that you haven't felt unwelcome here. We really are a great group of caring supporters. I hope you stick around with us.

Let us know how you and your hubby get along.

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.

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