For probably my entire life I had UC. I just learned to deal with it. I didn't think my life was all that bad... My surgeon says I don't know what it's like to be healthy. It recently became so bad that surgery was no longer an option and more of an inevitable end. So I knew it was coming, that didn't make the decision easier. My surgeon was (and still is) so optimistic. I feel like I'm finding every complication possible: an illeus, hypergranulation around my illeostomy, and now a perioostomal pyoderma?! Ouch, ouch and OMG ouch!!! It's been just about twelve weeks since my colectomy. I have this rectal stump that is impossible to control- it's worse than the ostomy by far!!! I'm in so much pain that I've now had to take another leave from work. I'm supposed to have surgery next week and I know the best thing for the pyoderma is to get rid of the rest of the diseased colon, which is that darn stump that I've been about done with since day 1. But this was supposed to give me my life back, so far I'm a million times worse than before. I keep reading posts on here and thinking that this is why I never wanted surgery. Is this my life now? Pain and further complications. I'm starting to feel hopeless. Will surgical complications and j-pouch issues control my life more than colitis ever did?
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Hi, Cshell!
There is a lot of expertise and experience on this board. But the truth remains, people come to this board when they are going to undergo surgery, during their surgery and right after their surgery for people to talk to. For the large part, this is a place for people to ask questions if they have a problem; therefore, it makes sense that what you discover on this board are details about an issue someone may have. Kind of like going to a service department at a car dealership, seeing all the cars up on the lift and thinking that all cars just break down so what's the use!
I have had my share of problems for the past few years, but finally feel the best I have felt since I was a young kid! There is a "graduation" of sorts for many, many people that come in and spend time while they go through the same stuff that is unique to us with colons that have to go. I feel well enough to graduate from here, like many, many others, but enjoy coming to see what I might do to encourage/help people. It's a tough row to hoe, but there is light at the end of the tunnel. I can't image what you are going through now, but there's an investment as the single most important thing in your life to "get healthy." Once you make that tough investment in time and energy, you can come out on the other end like a "normal" person and a great many wonderful healthy years ahead of you!
I agree with your doctor, many of us don't even know we have it rough, and kudos to all of us and how tough we truly are! Best wishes on your endeavor to good health. Good to know we have a place that we can talk with about "our stuff."
Cahell, this too shall,pass! I promise. My son has had UC since he was 6 years old. In 2014 we found out that his entire colon had to be removed because he was producing precancerous polyps. In June 2014 he had the surgery. He was 23. He also had a j-pouch made at the same time. Since then, he has had all sorts of uncommon right down to rare complications. He has had two more surgeries and is looking at another one perhaps early next year. My point is, something will always go wrong. But sooner or later it will get solved. Right now my son is back on the ostomy has he had major problems with his pouch but he is not in any pain. He doesn't like it, but can live. He lost 120 pounds but has since gained back about 60, not that he should have. Long story. But my point is, while he hates the ostomy he can eat, go out with his friends and at least is enjoying his life more than before. It will get better. It just takes a while. Try and stay positive, and find a silver lining in all this. They will figure it out. I don't know where you are being treated, but in our case we were being treated in NJ but my son's complications became so severe that our surgeon could no longer help us so we had to move on the NY City. Don't be afaid to change doctors if necessary. Sometimes a fresh pair of eyes brings a new perspective. But it will get better! Good luck!
I am not clear on the surgical steps you've been through, perhaps admittedly because I read it quickly. I would echo the view that often right after surgery, especially if there are some hiccups, its a head scratcher if you are in a better place. my suspicion is that over time, as the details sort out the hiccups get taken care of you will be in a better place. follow the surgeons orders to the letter and seek medical expertise as you need to, including calling on the surgeon and his staff as things crop up. good luck on your recovery.
It's awful, I know, but the sad truth is that the recover period can be rough. I had a lot of trouble with my rectal stump as well, but I was so sick with UC and required emergency surgery, that I had to live with the stump for over two years after my initial subtotal colectomy. I had lost too much weight, so they wanted me to gain at least 25 pounds before I went on to step 2 of the surgery.
I was prescribed Cortifoam for my rectal stump when it got really bad. The medication was expensive and unfortunately not covered by my drug plan, but it definitely helped calm the stump. I had less urgency and bleeding. This may be something you want to look into.