New and finally sharing

Hello everyone out there, I have been a creepy silent reader of this site for quite some time... but finally after several of the most difficult times of my life I decided that it is best to reach out and just SHARE or just RANT about what has been happening.

I am a 26 year old girl, still in school, working part time as an accounting assistant and getting my double major in business programs. Back in August I was diagnosed with FAP (hereditary colon cancer). My mother had stage 4 colon cancer when she was just 21 years old. Unfortunately it seems that I had gotten that fateful gene as well. Anyways. In August, when I did the screening (colonoscopy, ct scans etc) it had been all cancer free, bioposies all came back negative which made everyone breathe a sigh of relief. Surgery for a total colectomy with j-pouch procedure was suppose to happen ASAP regardless because of the high chance of cancer. This is where everything went a bit downhill, months passed and no surgery time, everytime I would speak to my surgeon's assistant she would inform me that surgery time had already been given to people with cancer. (this of course was fair and there was not much to argue there!)
Finally in November, my surgeon's assistant offered me holiday surgery on Christmas Eve if I choose to take it, because other than that she said it's not likely I would be getting any kind of surgery any time soon. So although I was a bit unhappy about spending my Christmas in the hospital, I thought perhaps it's a blessing in disguise... kind of a Santa's present for me for good health. I was set to have a 2 part surgery, first part to construct j-pouch with temporary ileostomy and take down surgery 3-6months afterwards.

December 24, 2013 was the day of my first surgery, I had partial laprascopic surgery with a 3 inch incision to remove most of my rectum. Surgery went well (or so they say) and everything was actually pretty OK for the first 3-4 days. Then things took a drastic turn for the worst. My surgeon left for holidays 2 days after my surgery so I was taken care of by mostly residents and other members of his team, I was very unstable and in extrodinary pain which was unexplained. I couldn't pee at all when they took out the cathedar, my leg went numb from the PCA system and didnt regain feeling for 2 days. All in all, I am just going to spare all the lengthy detail but I had a couple abscesses, blood clots, and horrible pain control.

I ended up being in the hospital post surgery for 6 WEEKS. During this time I swear I went a little mental, I was lucky that I had family and my boyfriend and my friends, but truth be told, it was the hardest time of my life. Also about 3 weeks post op, my surgeon came and told me that the parts of the colon they had removed was actually CANCEROUS and it had spread to 4 lymph nodes which means that I need to have CHEMOTHERAPY. When my friends asked me how I reacted, I didnt even know how I reacted because I was still in so much surgical pain I don't even think i reacted like a normal person. Sigh. The next day after my surgeon told me this I had a bunch of questions to ask him about the cancer, and he was extremely dismissive. I had never been a huge advocate on medication and I feel that chemo is very poisonous so I asked him for alternatives, he basically told me if I choose not to do chemo I have a 60% chance of dying within the next 5 years and if I would like to die. I was rendered speechless.

Anyways, now I have been out of the hospital for a couple of weeks, getting back into the flow of things (which I haven't mentioned but with an ileostomy has been such a struggle!! Everything feels so itchy and heavy!! is this normal!?!? Someone please help on this part)
I have started on my first chemotherapy treatment last wednesday, and so far, just fatigue but the side effects seem to be still kept at bay *fingers crossed*

I know this post is super all over the place and not in order but I just needed to rant out a bit here at a time before I officially go insane from all the changes that has been happening in the last few months. Even the click clacking of the keyboard sounds make me feel a little bit more together. Anyways, thank you to anyone that is reading ... any feedback or comment would be good and make me feel less alone :)

I'm so sorry about your ordeal, but thankful that you have had the colectomy. The FP gene is frightful and demands immediate attention. Wondering if things were scheduled sooner, maybe the outcome would have been different.

Wanted to touch on the mental distress of what you went through. I went through similar events. Was open and positive going into surgery, couldn't have mentally accepted it and prepared for it any better. My surgeon too went on vacation 5 days post op. I had a colectomy with small-rectum connection. The residents and attending surgeon neglected all the warning signs and I ended up having a ileostomy, and sepsis lead to catastrophic issues that rendered me 6 weeks hospitalized with 4 surgeries. I couldn't believe the extent of it all, and in the end, lost it. I'm most certain all the emotions you are going through, I did too.

Please hang in there. I'm glad you are not a lurker anymore. I found this forum 4 months after I returned home and I really wish I had way earlier. Those close to me were supportive, but the people here gave me a part of myself back. Strength, perseverance, wisdom, true kindred spirits. In the event that you need more assistance, seek out an ostomy support group near you. Dive into a craft, or your studies, keeping your mind off things.

I wish you my best regarding chemo and your mental health. You are not alone and we are here to help. Let us know your ostomy routine regarding your itchiness, could be the prep or wafer. Some here were taking for a short time, 3-6 months, antidepressants. Don't be afraid to ask your doctor if it all gets to be too much.

((((((HUGS))))))))))

Post Edited (windy city) : 2/25/2014 1:34:10 PM (GMT-7)

Thank you everyone for the responses. It really helps just to see some support and knowing that how I feel isn't completely NUTS. *hugssssss*

@windycity @activeUCer Also so sorry for your guys' bad experiences with surgery, but good to know i am not alone haha when it comes to neverending complications!

As for the heavy/itchy feeling around my stoma. I have extremely sensitive skin and my stoma is also super tiny, since it is temporary, it also isn't sewn very well so the skin has been SUPER RED and itchy around it. I saw a stoma nurse at the suppliers last week and she has me using the sensura flex COLOPLAST system, the close ended one because the open drainable ones are really big on me ( I am 5"2, 85lbs with a very small frame)

Anyways, I've tried the powder, I've tried the barrier cream, nothing seems to help with the itch!!! Also maybe the heavyness is because my underwear isn't holding it up properly? I don't know if that makes any sense or if im even wearing the proper underwear for this? Another difficulty I have is that even if I wanted to wear more "granny panties" for support, they actually don't make them in my size :S

Please if anyone has any suggestions!

For the heaviness, if the incision has healed, tape the top of the bag to your stomach. I also wear 2 pair of underwear, much cheaper than the special underwear.
I think everyone gets mental in the hospital, I threw popsicle at my mom and told her I wasn't eating that bleep bleep bleep thing. I don't remember it at all!
What you've been through is horrible and if you need some meds to help get through that's totally understandable. Good luck.

@activeUCer The supplier we have in Canada is Nightingale.. they offer all types of different brands but the one the stoma nurse suggested is the convex coloplast one. I think I will try wearing the belt because that seems like the only thing that can alleviate that heavyness feeling. Still confused about the itch though, because from everything I have seen, I have seen zero leaks? so where is the itchiness coming from?

@summerstorm I loved the popsicle story. hahaha reminds me when I was post surgery eating a popsicle thinking it was the best thing on earth and wouldn't stop telling my nurse how awesome it is. I am gna try taping the top of the bag, maybe that will help

@summerstorm the skin around is super red almost grey-ish color. It's been 2 months and still to this day is the same itchiness

Hi KunaKat - I agree with the above posters that you should see a WOCN to help trouble shoot.

Wow - you have been through A LOT, and everything you are feeling is so normal. Your feelings are your feelings, and we've all been there, so know that we all support you - this is a great site to be a part of, so welcome :)

OK, my hospital also uses Coloplast supplies exclusively, however my WOCN did encourage me to call the other manufacturers (Hollister, ConvaTec, etc) for samples to try to find what works best for me. My skin is very sensitive like yours, and the Coloplast wafer ended up working the best for me, but everyone is different. I do use a convex light wafer, and I also use an Eakin ring. I use powder on any redness.

Coloplast (if you are still using that brand) does make a midi size bag that is 10" instead of the normal 12" - if you call them up they will send you a TON of freebies. I use products from the Coloplast SenSura line, I prefer them over the Assura line.

I have heard great things about the ConvaTec mouldable wafer, unfortunately the adhesive doesn't work well with my skin.

I have two of those pregnancy band things that when I'm out and about I wear, it helps keep my bag close to my body and it feels very secure. I understand the "heavy" feeling you mention, maybe a pregnancy band would help?

Big hugs to you :)

@Kuna - we are all here for you, and at some point one of us or another can relate and help get you through tough times :)

OK, I unroll the bottom of my bag and velcro it back on itself. I use toilet paper to clean off the end, and then I take another bunch of toilet paper to wipe off a bit of the inside of the end of the bag as well. I don't use baby wipes and I'm wondering if some of your baby wipe is getting on the velcro closure, making it wet? It probably isn't stool if you are rolling the tail end up correctly (I'm assuming you are otherwise you'd have a HUGE mess!), but it could also be a bit damp from sweat maybe? Yes, Coloplast makes a midi drainable pouch - call them and they will send you lots - I got 20 midi drainable pouches from them :)

I've also just ordered some stuff from ostomysecrets - let me know how you like them! Walmart carries pregnancy bands and they are super stretchy so you don't have to worry about flow being restricted or anything. I've had no issues wearing one so far :)

Big hugs to you

Welcome to the site. You will find a lot of answers here. These guys have been a life saver for me. We even are here if you just want to rant. Sorry for all you've been through. What doesn't kill us, makes us stronger.

Best of luck,
Halo