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.
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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?
Hi Summer Lily
I really feel for u
I'm 52 now & also have FAP (inherited from my mum) I felt exactly like u - I went into hospital (I live in UK) in 2002 a healthy women but like u had polyps & came out with an ileostomy for 4 months then reversal with jpouch. I felt so scared of cancer that I agreed to av the colon & rectum removed asap. Life was hard for about first 6 months but eventually it got better & easier to live with. I av rough days still but often av to remind myself "it's better than cancer". U need time to heal (body & mind) so try to be patient & kind to yourself & ASK for help when u need it.
Hi Summer L,
I am so sorry...although this is always a rough journey, not everyone has it as rough as you are having it now.
You are going through a very dark patch...and endless dark tunnel with no end in sight..At least for now. It is called PTSD (post traumatic stress disorder) and it is hell. It makes you sad, hopeless, terrified, negative, sleepless, puts knots in your guts, makes your heart palpitate, causes cold sweats, makes you stink, clouds your mind and dreams...and those are only a few know symptoms...There are many more. Some people weather it, others take meds or talk therapy for it, others meet in groups to talk about it or on forums like this.
You need people who understand what you are going through, people with whom you can share you terror, fear and pain...people who will not pretend to understand but really do. You need to cry, a lot...And then cry more. Tears help so do not keep them bottle in...let them out...you are allowed...you are in mourning for your life as you knew it before, your freedom and your health...nothing is going as planned and your body is making you pay for it...
So for now, use whatever you need to feel better...but eat...eating will help you to heal...get a hand blender and blend fruits or veggies or something, anything that you and your pouch like that does not burn on the way out.
You are facing a double problem...Things that go in and do not block you and things that come out and do not burn...and knowing which ones are ok for both. It is so hard.
There is a light at the end and eventually, you will see it...for now, it is just too far off for you.
I know that that darned NG tube is hell, I cried for 2 straight weeks when I had it in post-op in 2000...it felt like I had a Hover in my head that would never shut down. I couldn't sleep or eat and would choke on my own saliva and tears. It didn't stop me from getting an ileus and going down another horrible road...but I still survived it (didn't feel like it at the time).
I get a lot of blockages, try to do what I can to avoid them and now know (more or less) what to do whenever I get them...I am so terrified of that darned NG tube that I prefer to wait it out here at home than to go to ER...so far I have been lucky.
Yes, your life sucks and your body that feels like your worse enemy...for now. It may take a while for it to heal...But it will...one way or another.
98% of us do...you are lucky to have an understanding hubby beside you...it is so much better than being alone through this journey.
Look on that as a small ray of sunshine in a world of darkness.
Do what you need to do to find a calm and peaceful place to heal in...light candles, listen to music, take hot baths, lay on a heating pad (I use a cherry pit filled bag that I throw into the Mic every night...it soothes me and puts me to sleep almost immediately) .
Give it time but do not give up.
Sharon
Hi There,
I know its a little late for a reply but I fell on this post and wanted to share the pain and also to share a word of encouragement.
I have Gardner syndrome with high grade dysplasia for the last 5 years even thought I have had the "Surgery". I also have both of my daughter with Gardner Syndrome.
I have my 9 years old daughter that was released this week from here first phase of the IPAA operation. She currently has a temporary ileostomy and she hit every complication possible so far to the point I thought she might not make it. she needed blood transfusion, PICC line, Blood cloth and just pain that no one should ever feel.
It was to the point that I wondered if I made the right decision, but in our family the Gardner syndrome is agressive, Me myself I am back at the doctors tomorrow to see what we can do, I have 50 polyps in my j-pouch and for the last 5 years I have had high grade dysplasia... Will see.
I have had the surgery myself back in 1993 at age 7 and seing her it brings me right back to that day and man if I could I would take that pain from here.
My 9 years old has kept a smile on here face all the way through, and even do life is hard right now and that she is in pain, Here is the quote from my little one "someone out there that has it harder than us and she says it can be worst I could have cancer so let keep positive".
Not sure this helps but you are not alone and that at some point, it will get better if you keep fighting. Easy to say harder to do but trust me I have been there I have been in that limbo on and off for the last 28 years. I am now 33 and with my daughter facing it I just accepted it.
As a parent I feel guilty as hell to have passed that on to both of my kids, now more then ever but life isn't perfect nor easy. But please try to keep a positive attitude it make a world of difference, some days will be harder than other but dont stop trying.
Hope you make it out alright and if you need some one to talk to, we are there.
I don't know what new things I may have, my doctors have not been very good at following up in seeing me or in reviewing my test results. Since my reattachment, I have had terrible diarrhea and also developed a terrible hernia. They scheduled surgery but since the diarrhea was so bad they did a bunch of tests. I tested negative for C-Dif but they did not give me results for any other tests. Neither my GI nor my surgeon have followed up and called back on a dozen calls to their offices to ask what is going on. I have an appointment with the GI's office next Tuesday. I think their behavior has been unconscionable.
Also, my fatigue has been so bad that I usually just rest all day and use the bathroom. Any time I eat I pay for it with diarrhea. I run the risk of having an accident if I go anywhere. My quality of life is far worse than it was before the surgeries.