Tired and depressed and sick

I had my colectomy on September 14th this year and it ended up with the three-week-long ileus, three hospital visits, and two NG tubes. I ended up with constantly burning skin and although I knew the J-pouch would be an adjustment, I thought nothing could be worse than my skin constantly burning. I had my reversal on December 21st, ended up being sent home with a blockage, got another NG tube in the hospital that scratched the hell out of my throat (I was vomiting blood and the tube was often full of red), and spent time at the dirtiest hospital where none of the staff took care of me because I literally could not ask for help with the tube down my throat. No one would help me go to the bathroom and I was chained to the bed thanks to the NG tube so I'd just end up going to the bathroom on myself. It was the worst Christmas ever. 

Now I can't sleep, I'm always nauseous, and a cry a lot because I can't stop thinking of the NG tube. I'm trying to drink water and Gatorade for electrolytes but my stomach just always feels full and nauseous. I'm terrified of everything giving me a blockage. When I lay down I can't sleep and when I sit up and I can't enjoy any activity. I'm tired of rushing to the bathroom. I'm doing kegels but it hasn't helped at all yet. I have to wear diapers. 

I follow some blogs and read the forums, but for most people who have this surgery it was an improvement even when it's as bad as it is for me. My colon worked perfectly fine, it was just full of pre-cancerous polyps. I keep wondering if this surgery was even worth it and what the point of this was. I feel like I made a mistake and there's some treatment for FAP polyps out there that nobody told me about, since nobody told me it was going to be this freaking hard and miserable. I already suffered from severe depression and anxiety, and this whole experience is just making it worse.

I have a follow up with my surgeon next Friday (in which he'll tell me two years blah blah blah) and I'm waiting for him to return my phone call to ask if I can start taking imodium. I'm pretty sure he said I could, but my husband's freaking out because of the blockage and wants the surgeon to give permission again. 

Before I was working on the slow acceptance of my life, but now I just hate it. I hate this surgery, I hate this j-pouch, I hate that I was born with this stupid disease, I hate that everyone else I know is healthy and happy, I hate the entirety of my existence, I hate that neither of my parents knew my father had FAP because if they had known I would never have been born and wouldn't be sitting here being a vessel from which feces flows through. I just don't want to be here anymore.

Original Post

Summer, I am so sorry you're going through all of that. My heart just hurts for you. I had my takedown/creation of j-pouch on December 14th, so I am recovering from that now; also feeling pretty down/depressed just because I feel so limited in what I can do and am in some amount of discomfort all of the time. When I had my colon removed, I also had an ileus and an NG tube and that was hands down one of the most trying experiences of my life. I cannot imagine going through it more than once.

Please send me a message if you just want someone to correspond and commiserate with! The plus side for me is that I was in a really good hospital with a great surgeon and helpful nurses. Your hospital experience sounds awful and I wonder if it may be worth looking into being seen somewhere else...? I'm sure the thought of that sounds like a huge pain, but your quality of life is SO important and getting good care is crucial to that. 

Is anything improving for you yet?

Hello, Summer Lily.

I feel for you. I am sorry you had a very bad hospital stay and could not communicate with the nursing team because of your NG tube. What are you able to eat and drink besides water and Gatorade?  What is a typical day, food wise, for you?  There are a lot of members with FAP and I hope they can chime in with their remembered experiences, or what they might be going through now. 

If you are not able to communicate with the nursing team, ask for a big writing pad and a marker and write down any help you need. Use UPPER CASE if you need to yell. I hope you never need to stay in hospital again. I hope you feel better today. What were you able to eat today?

 

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