I just lost my mom on March 6 and I know this is going to be a long post. My mom had severe Crohn's disease and colon cancer. It all happened too fast though. I don't even know where to start. In December of 2012 my mom had a bowel obstruction, which is pretty common for those with Crohn's disease. She had to have a bowel obstruction and the surgeon found a mass when he went in to resect her bowel. The mass turned out being cancer, but luckily the cancer hadn't spread and she was told she was cancer free. She was also told that the chance of the cancer reoccurring was relatively rare. She did not need any chemotherapy or radiation and she eventually recovered from the surgery, although she recovered very slowly. She was put on Prednisone at the time and did extremely well for a period after finally recovering from the surgery. Eventually her GI doctor weaned her off of the Prednisone and she had a pretty severe Crohn's flare that landed her in the hospital for a few days. Soon after that severe Crohn's flare she was put on Remicade infusions, which really helped her. The Remicade pretty much put her into remission from Crohn's. Her GI doctor wanted to do another colonoscopy because she kept on getting polyps and sure enough he found more polyps, which he removed and biopsied. The polyps turned out to be cancerous. At the time they wanted to remove the rest of her colon and have her use a bag, for lack of better wording. She did not like the idea of having the rest of her colon removed of course, but, in the meantime it was discovered that the cancer had spread to her abdomen also. The goal then became to give her chemo therapy and hopefully get the cancer into remission, at which time her colon might have then been removed. She started first with a round of chemo therapy in pill form. After the round of the chemotherapy pill it was determined that she had had minimal growth. She then had a port put in for chemotherapy infusions, was told she was very unlikely to lose her hair, which she was relieved about and was told that the chemotherapy had a very high success rate. She was already starting to go into a Chron's flare when she got her first Chemotherapy infusion and , as luck would have it, the number one side effect of the Chemotherapy she was receiving was diarrhea. She received one Chemotherapy treatment and developed such bad diarrhea that she kept on having to get IVs just to get her hydrated. She was finally put in the hospital again so she could receive continuous IV hydration. She ended up being in the hospital for 12 full days, during which time she had low potassium and magnesium levels. She also had such low hemoglobin levels that she had 2 blood transfusions and had another colonoscopy. She finally came home and was so extremely weak by the time that she came home that she couldn't even walk. She just sat in the recliner for several days because she couldn't even walk upstairs. The hospital was sending out nurses and she was going to receive both physical and occupational therapy. My sister finally talked her into going back to the hospital several nights after she had been sent home. She was readmitted with a high white blood cell count and cellulitis. She was even probably going to go to a rehab facility when she was released from the hospital. A CT scan was done later on that day of her abdomen. I was out of my mother's room later on that day when I received a call from a doctor. He told me he wanted to talk to me, at which point he told me that multiple lesions had been found in my mom's abdomen, he had paged a surgeon because she might need surgery and he was moving her to the ICU. She also had low hemoglobin levels again so she was given 2 more blood transfusions. The surgeon, which I never got to talk to, meant with my sister and showed her the CT scan. My mom was full of infection in addition to the bad Crohn's flare and colon cancer. He told her that my mom had a severe flesh eating disease called Necrotizing Fasciitis. He was not going to perform any surgery on my mother because it would have been too risky. He would had to open my mom all up her infection was so severe and said without the surgery that my mom was basically going to die. My mother was started on very strong IV antibiotics just in an attempt to slow down the infection, but the antibiotics didn't even work to slow down the infection. My mom's white blood cell count continued to rise higher and higher despite the strong IV antibiotics. She was then sent home as a hospice patient to basically die. She had to be brought home by ambulance. She couldn't even be brought home by car and, although I was not there, I heard that they could not get the gurney through the door so they had to pick her up and literally carried her to her death bed, which was a hospital bed. She was given morphine for the pain and was still in pain every time she had to be rolled on her side. She was brought home to die on Monday evening and she passed away on the morning of Thursday March 6.
I had already been going through such a difficult time for the last several years before all of this happened. I am unemployed and have a very hard time with fast paced jobs. I'm also wide awake and am on harsh sedatives. I'm very confused, feel lost, overwhelmed, extremely scared about the future, etc and I am even worse now that I've lost my mom. I never moved out of my parent's house and so I had the privilege of seeing her and being with her everyday. She, however, never really opened up to me or really anyone for that matter, but I don't know how much we really ever encouraged her to open up. I never once saw her cry during this, but I don't know how well I would have responded anyway. We never hugged much as I got older and it had been a while since I had heard her say she loved me, which I now think I regret. We did get a long well, which I'm glad about though. I talk to her out loud and I wish I could hear her again. I just hope she can hear and see me still. I think that I might OD with all the different meds I had if I knew that there was a paradise that I would go to, but I don't know what would happen and I am afraid of going to hell, if it exists. I am at a point that I'm afraid to live and be miserable, etc but I'm also afraid to die and burn in a hell.
My Grandpa, who has lost my Grandma and now my mom less than 3 years within each other, made the remark when I saw him last something like "You need to get a career. Your mom is gone now and your dad won't always be here" or something like that. His remark just totally overwhelmed me. I am and have been having a hard enough time for the last several years without that. I attended college for several years and, although I was usually a dean's list student, I didn't quite finish due to severe difficulty with the math courses, etc. I don't really have any friends in this area and I am lonely in addition to feeling completely overwhelmed, lost, confused, scared about the future, etc. I just don't even know what to do and I haven't known what to do for several years. I really don't know what to do without my mom here. I am now living alone with my dad, whom I have had a very rocky relationship with over the years. He was often verbally abusive to my mother and was/can still be verbally abusive to me. He has been better toward me since my mom has passed away, but I always worry he will get bad again, that he might kick me out and that I will have no place to go. He says he is not going to kick me out, which I was worried he would do if my mom died. I just don't know what to do.