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Living with Crohn's Disease

Crohn's Disease can be life threatening.

Crohn's Disease can make life unbearable. (Photo by Mwangi Gatheca)

Any person who has had a serious Crohn's flare has most likely been through hell. This disease is often misunderstood by people who have never suffered from it, or been close to someone who has it. Crohn's is a horrible life threatening disease that can make a sufferer's life almost unbearable. Adults and children are both prone to this illness. Among other things, it can affect bowel control. Some people may find it funny to hear or tell a school or work place story about someone who had had a unfortunate accident in their pants. My hope is that this article will help readers realize how difficult Crohn's Disease can be to live with.

The Unexpected Crohn's Diagnoses

My husband's Crohn's disease was not diagnosed until he had a bout of excoriating pain. He was admitted to the hospital where they thought he was suffering from appendicitis. It was discovered by the surgeon that it was not appendicitis that was causing the pain. The pain was caused by a severely infected intestine, which they had to remove. Apparently he had had Crohn's for years, and did not know it. He had suffered with gut issues for a long time, but thought he had a nervous or sensitive stomach. Unfortunately, at the time of his diagnoses, we did not understand how serious Crohn's Disease is. He spent about 15 days in the hospital after his surgery. It took a while to recover from the surgery. After that, his Crohn's seemed to be well-controlled with medicine. We were lulled into a false sense of security about this disease.

The Crohn's flares start up.

My husband continued to make life with Crohn's manageable with the aid of medicine for over 10 years. Then he started to have problems. The nausea was worse and he was feeling exhausted most of the time. After about two years of this, his Crohn's kicked in with vengeance. He started passing blood when he had a bowel movement. He was having uncontrollable diarrhea. His GI doctor put him on Humira, which is a medicine used for autoimmune disease. Unfortunately for my husband, this did not help. In fact, it appeared to make him worse. It was becoming difficult for him to leave the house. The fear of having an accident in his pants was overwhelming for him. I tried to encourage him to get out and do things with friends. However, I realized how difficult it was for him to leave the house. Especially when the accidents became very frequent. The worst incident happened while we were at the grocery store. He needed to rush to the nearest bathroom, but did not make it. We had to leave the store with me walking behind him to try and cover the evidence of his accident. He rarely left the house after that incident.

The Many Hospital Stays

It got to the point where my husband only left the house to go to the doctor or to be admitted to the hospital. He had lost 100 pounds and was very weak. The hospital visits were becoming more and more frequent. He was admitted to the hospital on more than 12 occasions in one year. My husband would go in to the hospital for a few days, then they would release him. There were many times he was readmitted within days of being discharged. He was also suffering from falls caused by how weak he was. That meant more hospital stays. Going to the bathroom around 10 to 20 times a day was playing havoc with his body. His sodium and potassium levels were causing complications for him. He would frequently get dehydrated. All in all, life was not pleasant for him. We had to put plastic sheets on the bedroom floor because many times he could not make it from the bed to his bedside commode in time. We had recently downsized homes to a small house so there was no escaping the odor that would permeate the house. This worried and embarrassed my husband.

Getting Another Opinion About the Crohn's Flare Ups

After close to two years of his serious Crohn’s Disease flare ups, with no sign of improvement, his GI doctor told my husband he was out of his league. He referred him to specialist at KU medical center. By the time my husband made it to that appointment he was very ill. He was using a walking stick to walk. He needed a wheelchair to get from the hospital entrance to the doctor's office. My poor husband had an accident in his pants while waiting for the doctor to see him. He was too weak for me to take him to a bathroom to clean up. I had to just inform the doctor about the accident when he arrived. He was very understanding and said he would get help for us after the appointment. After looking and talking to my husband, the doctor realized how ill he was. He then decided to admit him to the hospital on the spot.

Surgery for Crohn's

He was in the hospital for two weeks. They did a fecal transplant on him, and thought it had worked so they released him on a Friday. That turned out to be the weekend from hell for him... he started having to go to the bathroom a lot. I counted 30 times on that Sunday. He was very weak. He felt nausea all the time. Food did not tempt him at all. His weight was continuing to drop. He looked like a shell of his old self. When the doctor's office called at the start of the week, I informed them of how ill he was. They told me to bring him back to KU medical center... he was admitted to the hospital for another month. During that stay, he got very ill. In order to save his life, they performed a Ileostomy on him. When he returned home, he was extremely frail. Over time, he started to eat more. This helped him to gain some weight. He does not enjoy having to use an Ileostomy bag, but his quality of life has improved.

The Crohn's warrior fights on.

As of now, my husband still is having health issues because of Crohn's Disease. He spends time in the hospital because of the problems he is having with his sodium and potassium levels again. I am hoping they can figure out what is going on with his body. He dislikes having to be in the hospital. On the upside, though, when my husband is doing okay, we are able to go out of the house without having to worry about how close the nearest bathroom is. We can go to the movies and out to eat. Things we had not been able to do for months when he was so ill. I am thankful for that. My wish is that someone will soon discover a cure for Crohn's Disease.

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