Crohn's Disease Forum » Your Story » My husband has CD, ED, and ileostomy

08-04-2015, 02:40 PM   #1
Join Date: Aug 2015
My husband has CD, ED, and ileostomy

Hello, everyone!

The is the first time I'm sharing publicly of my husband and our family's journey since 5/13. On May 18, 2013 my husband at the age of 35 awoke with severe abdominal pain. It continued throughout the day without any relief and increased intense pain. He couldn't vomit nor have a bowel movement. After10 hours he finally decided to go to the ER. By the time we arrived he couldn't walk and was gasping for air. The ER docs and nurses immediately put him in a trauma room and hooked him up to liquid oxygen. Within an hour he had a CT scan, catheter, PIC line, MRI, GI specialist, and Infectious Disease doc. They had also contacted the surgeon on call that night but he never showed.. An hour later he was in ICU with his BP so low they couldn't get a reading, oxygen around 86, and HR pushing 200!! Even at this point (I guess I was in shock) I didn't realize how severe his condition was. It was until about 4 hours later when the nurse came into the waiting area to sign a form so he could be put on life support when I realized how sick he really was. At that point one of the ICU doc asked me what surgeon he should contact because he needed immediate surgery to find out exactly what was going on since the MRI and CT scan didn't show much. Within an hour the surgeon of my choice (not the one on call the night before) had him in the surgery room prepping him!! When asked to sign the consent form for the surgery I was told he was so ill he had a 2% chance of surviving during surgery and a 0% without it. The surgery took 2 hours but when the surgeon "opened" him up (from just below breast bone down to just above groin area) he immediately seen the "problem"... his entire colon and part of ileum was "dead". At that point his entire colon and a few inches of small intestines was removed and an ileostomy was created. He was diagnosed with toxic mega colon. For 28 days my husband continued to fight for his life!! He had so many IV's I think I counted 14 at some point, dialasis machine, pic lines, ventilator, etc. Before he was taken off of the ventilator he endured set back after set back:

sepsis (of course)
double pneumonia
kidney failure
infection in ileostomy
another surgery (due to ileostomy infection)
high fevers
BP plumbiting almost daily
allergic reaction to an antibiotic
fighting sedation so hard he had to be restrained and ended up with bruises and blood clots in arms ands legs
lost 95 lbs
feeding tube

When he was finally well enough to come of the ventilator he went through 4 months of PT to walk again ang get some strength back.
After a total of 59 days in the hospital (40 in ICU) the local doctors/specialists still could not figure out how a seemingly healthy 35 year old man suddenly fall so ill without ANY arly warning signs. After he was finished with PT (6 months after he 1st fell ill), we contacted Dr. Beck (GI specialists and surgeon) at Ochsner Medical Center in New Orleans, LA. Dr. Beck and Dr. Thompson teamed up on my husband's case and diagnosed him with Crohn's Disease. Although they had never experienced a patient with Crohn's suddenly and so fierce appearing. His was originally started on remicade but then we found ur insurance does not cover a penny of it (not good). He has now been on Humira for 8 months after being on and off of Prednisone for about 4 months. The Humira seems to be helping his flare ups! I am very thankful to have my husband on this earth with me and our children. For over 2 years him and his well being has been my main concern. However, he has attempted having sex with me twice in 2 years with only once being successful (ED). Before he became ill we both had a HUGE sex drive even after 3 children. Now mine is still here and his is NOT. We have talked about it several times but he has too much Pride to discuss it with his doctor. He also has anxiety about his "bag" (ileostomy pouch) getting in the way. I've expressed to him that that does not bother me. I've seen him at his worst and vise versa. I'm sad to admit this but deep down the sadness is turning into anger from him not wanting not being able nor doing anything about having sex with me....
08-05-2015, 02:15 PM   #2
Join Date: Jan 2015

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I am sorry that your husband has gone through much. I empathize with him. I request you to remember, however, that he is an ill individual, and your "anger" would not help him in any way. I further believe that humane behavior from your side is what is needed, and IMHO I do not see any evidence of such behavior on the particular aspect of your lives that you write about. The "anger" that you are talking about, is, I think, most unjustified.


Crohn's Disease Forum » Your Story » My husband has CD, ED, and ileostomy
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