Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Hello! I'm going by Merri on this site. It's my nickname. I don't have Crohn's, my husband does. He was diagnosed in 2009, 5 months after we got married. He was untreated for about 7 or 8 years. His large intestine was in bad shape by his first colonoscopy. He's tried infusions (unsure of the drug), Cimzia, and Methotrexate. He has been unresponsive to everything and its getting worse. He had a colonoscopy last Monday and his Dr said that he has precancerous changes in his colon/large intestine (I now know they're the same). With him getting worse despite all of his treatments it is strongly recommended that he have surgery to remove the entire colon and he was have an ostomy bag for the rest of his life.
He doesn't like talking about his Crohn's. He is, of course, devastated over this. I can't imagine how terrified he must be right now. I'm terrified, too. Since I can't talk to him about it, I wonder if anyone has an ostomy bag who could help me understand how to help him get through this. Are there any tips and tricks for being prepared to run errands, hang out with friends, travel, and anything else you can think of. What supplies do you need? How do you care for your ostomy? What is recovery like for this surgery? Any tips for me as his care giver and wife? Any random tip would help. Yesterday, I saw the cloud of depression set up camp on his head. I'm terrified that this is going to break his spirit.
That was longer than I thought. If you read the whole thing. Feel free to correct me on medical terminology! I'd love to hear your story. Bottom line? I want to know how to help him get through such wwxq
He doesn't like talking about his Crohn's. He is, of course, devastated over this. I can't imagine how terrified he must be right now. I'm terrified, too. Since I can't talk to him about it, I wonder if anyone has an ostomy bag who could help me understand how to help him get through this. Are there any tips and tricks for being prepared to run errands, hang out with friends, travel, and anything else you can think of. What supplies do you need? How do you care for your ostomy? What is recovery like for this surgery? Any tips for me as his care giver and wife? Any random tip would help. Yesterday, I saw the cloud of depression set up camp on his head. I'm terrified that this is going to break his spirit.
That was longer than I thought. If you read the whole thing. Feel free to correct me on medical terminology! I'd love to hear your story. Bottom line? I want to know how to help him get through such wwxq
I remember after talking with the doctor and finding out what I had I was in shock and really scared about it. I needed time to process what he had told me. This maybe what is going on with your husband. I cannot say that is for sure but I know that it was for me. Just being supportive to him and doing what you are joining a group so that you can learn more is a great start. Research as well. Good luck and God Bless
I have Crohns disease and last Sept had to have an illeostomy with about 1.5 feet of my colon removed. I have a ostomy bag (although it will be reversed in about 2 weeks now)..
I was very concerned about the bag..I had zero experience with them. I'm amazed at how much easier it has made my life. The horrible pain was gone from the damaged area of colon. I still have Crohns of course and am on meds. The staff goes over everything with you before the surgery and then are available to help with any questions. You will soon be very familiar with the terms 'wafer' and 'pouch'..Once you get used to changing the pouch, it only takes about 15 minutes or less for the whole thing. There are great supplies at Ostomy secrets website..to go under his clothes. I watched a lot of youtube videos too on changing the wafer and pouch. They helped a lot. Also, there are usually support groups in your area where he can talk to others with an ostomy. Ask the ostomy nurse that trains you at your hospital.
Yes, it is very scary at times..The unknown. But, once you get the hang of it, it's really not bad at all!!!