Caring For a Loved One With Crohn's Disease

My husband has some residual pain and small scars from the surgery, but his Crohn's disease is mostly under control. Going through these serious hospitalizations and the surgery taught me the importance of being in control of your loved one's medical care.
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My husband woke me up at 1 a.m. on April 15, 2011 with a stomachache. For most people, a stomachache isn't a major concern and passes with time. However, he had been on and off the toilet all night, nothing was moving, and the pain wasn't getting better. I jumped out of bed, put on my shoes, and we went to the emergency room.

My husband suffers from Crohn's disease, so a stomachache that doesn't go away is an emergency. According to the Mayo Clinic, Crohn's causes the inflammation of the lining of your digestive tract. It causes abdominal pain, severe diarrhea, malnutrition, weight loss, fatigue, and all other types of physical ailments.

On our way to the emergency room, we were thinking worst case scenario: a blockage. After four hours in the emergency room, a CAT scan confirmed what we hoped it wasn't. My husband had a partial intestinal blockage, which had been building for years in a narrow passageway in his intestines. So many questions popped up in my head when the doctor told us this: How will it be treated? Will he need surgery? I kept asking questions to the doctor on call, but he didn't know what the long-term treatment would be.

To treat the problem short-term, the doctor inserted a nasogastric tube into my husband's stomach. This tube goes in your nose, down your throat and into your stomach in order to drain the contents of your stomach. Seeing your loved one with a tube that drains backed up feces from his stomach out through his nose is a sight that I hope not many people witness; it is gross to say the least. But it resolved the blockage for the moment.

Unfortunately, this wasn't the first emergency hospitalization that I went through with my husband or the first one where I feared for his life. One year earlier, following a routine colonoscopy, my husband spiked a 104-degree fever 30 minutes after coming out of anesthesia as we were preparing to be discharged. He ended up spending five days in the hospital with an E. coli infection caused by a small puncture made by the scope during the procedure. I learned quickly during my husband's first hospitalization how important it is to ask questions. I am my husband's sole caretaker -- I am responsible for ensuring that the doctors and nurses are doing everything they can to treat him appropriately. However, without being a doctor, there is no way for me to know what the right course of treatment is without asking questions.

After five days in the hospital last year with the blockage, my husband was released and we immediately saw his gastrointestinal doctor. His doctor told us what we feared the most -- my husband needed to have a bowel resection. A surgeon was going to laproscopically remove the section of his intestines that was causing the problem. After they removed the portion, they would reattach the intestines and he would have a wide passageway, eradicating the problem. Of course I asked a lot of questions: What would the surgery entail? What would recovery time be like? What physical limitations would he be under? After going through the gamut of questions, the surgeon reassured us that recovery time wouldn't be very long and my husband would be able to resume his regular life. While this sounded great, we began to worry about possible complications.

Surgery is common for patients with Crohn's disease. In fact, between 66 and 75 percent of people with Crohn's Disease need to have surgery at some point in their lives. Bowel resections are typical procedures for those patients who end up needing surgery. However, there are still many risks associated with the surgery, including blood clots, bleeding in the stomach, and infection. Worst of all possible resection complications is the risk of the patient needing an ostomy. In an ostomy, an opening is created allowing excrement to drain from the stomach into an external pouch. There are different types of ostomies and they aren't always permanent. However, an ostomy is my husband's worst nightmare. He told me time and time again, on this occasion and prior to it, that he'd rather die than wake up with an ostomy.

I tried to reassure him that it wouldn't happen to him -- only a small amount of his intestines were being removed. But it was hard keeping a straight face when I was not only worrying about possible complications but also about him making it out of surgery alive.

Thankfully, the surgery went smoothly. My husband recovered in the hospital for five days and then was released. He spent another six weeks recuperating at home, during which I slept on an air mattress on the floor next to our bed, waking every few hours to walk him to the bathroom and give him his medication. He felt weak and was in immense pain, but in retrospect, I'd rather that than what could have happened.

Now, a year later, my husband has some residual pain and small scars from the surgery, but his Crohn's disease is mostly under control. Going through these serious hospitalizations and the surgery taught me the importance of being in control of your loved one's medical care. Previously, I went to doctor's appointments and listened but never took an active role in his care. Now, I try to stay as informed as possible so that I am familiar with the newest treatments and what might be best for him. When we see his doctor, I make sure to ask as many questions as possible, much to my husband's dismay, to ensure that I understand everything going on. I know, at some point in our life, another emergency situation will arise. And when it does, I want to be prepared so that when I get woken up at 1 a.m. I at least have some sense of hope that, while it may be serious at that moment, everything will ultimately be okay.

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