10 months post-colectomy and still in pain

High contrast CT showed the pain is not due to anything from the surgery. I have Ovarian cancer. I get to have the ovarian removals and the first step j-pouch surgery at the same time. A 2 for 1! Just to be extra safe the surgeons are going to use supra film to avoid painful scar tissue. I still swear by and recommend post-surgery physical therapy.
Trying to stay optimistic and cheerful but my bottom lip is a little trembly.

So sorry to hear your news. That must have been a huge shock. Are you having any other treatment? chemo or radiotherapy? Sounds like you're in safe hands with your Dr and surgeon. Thinking of you.. Sarah

Big (((((((HUGS)))))))))))))). You are in my thoughts

Thank you all for your kind postings. I just found out last night. I have one more ultra sound to confirm the CT scan and to determine if it has spread. Due to the nature of ovarian cancer, the surgeon really won't know until he is inside the abdomen. The rest of the treatment i.e. Chemotherapy won't be discussed until we know more about what type and stage it is. Radiation is not effective for ovarian cancers.
The surgery includes removing all abdominal fat. I could end up skinny! I would not complain about that I am very excited about hopefully becoming pain free. I don't need my ovaries anymore so I am not upset about having them removed.
The surgery date will be set after the ultra sound. I want to bring in a gynecological oncologist but I am getting a lot of resistance from the other doctors.
My main purpose in posting was to let everyone know that chronic pain is not a normal consequence of a total colectomy. It is important to keep pushing the doctors and keep searching for answers.
All the best,
Szm

Post Edited (Subzeromambo) : 1/11/2012 11:10:56 PM (GMT-7)

You're welcome.... I was so scared when my friend got diagnosed, so I did want to share. I think treatments have improved.

Sounds like you're doing a great job advocating for yourself at a tough time. I can't imagine you not having a specialized oncologist involved, why are the others resisting? And good for you for pushing to keep getting tested on the pain.... you're right, and if the pain is cancer, then an earlier diagnosis can make a huge difference.

Are you going to get genetic testing for the BRCA gene (ignore if that's overwhelming).... do you have any daughters? If so, might be a good idea at some point down the road so they can be monitored ... (a colleague of mine who has breast cancer and is doing great was just so excited recently because she, and hence her daughter, does not have the gene.... my friend w/ovarian cancer does have it, but she found out when her daughter was in her 20's ....).

Great about the weight loss -- there should be some prize in all this!

How are you doing Subzero?

I don't think you're wrong to want a gynecological oncologist. Push for what makes you comfortable. I don't see why the other doctors would want to pursuede you to do things that you're not comfortable with.

*hugs*

What an awesome neighbor! So glad that he called out your surgeon for you -- less energy output for you and probably much more effective too.

Your mom does have a point ..... I'm in Massachusetts, so the insurance laws are much better here regarding pre existing conditions, and I didn't think about that aspect. It was such a relief for me here when the health care law passed -- before that I was afraid I could never change jobs.

I found crochet to be one of the most helpful things when I was on bed rest (I am just coming off of 3+ months of that), so I think knitting is a great idea. At first I was making mostly small stuffed animals (amigurumi) and that was very satisfying.... I could make one in a day or two, they were easy to manage w/out too much movement, and then I gave them away to kids, and it felt good to be able to give something when so many others were taking care of me.

Later I did a big project and made a blanket, and that was satisfying in a different way.

Also, crochet/knitting is very calming, and that helps a lot.

I also watched a lot of movies and tv shows. When I started feeling better, I got some courses from the teaching company that were very good .... nice to learn new things (the one on stress and health is especially good and relevant). I didn't want to read much at first, but later started that too.

I found posting here to be helpful too -- even more in responding to others than talking about myself. Appreciated feeling useful (I wasn't that sick though..... )

I keep a blog on carepages and that's a nice way to keep family/friends updated and to get messages w/out it taking a lot of extra energy.

I found I had to be careful about how much work I tried to do.... I avoided the things that were either a) so absorbing that I would lose track of my posture etc in bed and possibly do damage and b) too stressful. I did do some work on my website that was fun.

I also got a twitter account, and that was much more interesting than I expected. If you follow people who are interested in things you are, then they post links to an amazing array of things that you wouldn't necessarily find through your regular networks. There are various chats on there too, which I found very strange at first, but I like #mathchat, which is related to my work, and was a way to feel like I was sort of meeting new people when I was on bed rest.

Your situation is different than mine, but maybe one or two of the things I did will resonate w/you.

Thinking of you and hoping your doctors get lined up soon and you have a plan. Are you going to have surgery soon?

Hang in.

Not so sickly girl, I encourage you to give crochet or knitting a try. I am a mathematician, thought I was terrible at crafts.... I learned to crochet to make math models for my class.... and was kind of blown away that I could actually do it. I think I have no natural talent for it, but I did it enough so that I got better and the things I make are not perfect, but they are good enough...

It's funny, I first learned from a math book, but I was doing it wrong (I thought slip stitch was single crochet, which won't make sense to you yet, but will to others). At a conference, I met the author of the book, and she showed me what I was doing wrong.

But there are tons of videos on youtube etc. If you know someone who can show you, that can be helpful. Also, I think yarn stores and some adult ed programs have classes. To learn new stitches and get ideas for projects, I got a bunch of books out of the library and then bought copies of the few I liked best.

One annoying thing w/crochet is that the first few rows are harder than subsequent rows.... so persistence is good.... you also get better at making the stitches even. My stuff was pretty uneven at first, but I got a lot better at it.

I can't really speak on crochet vs knitting, as I don't know how to knit (yet!) .... seems like many people prefer one or the other.... but I'm not sure which is easier to learn.

Subzero, hope you don't mind this side conversation on your thread....

I just realized I missed some questions. I am waiting for the results of yet another ultrasound, but it appears the surgery will be in two weeks. The surgeons still have to work out who is doing what. Current plan is to have all the cancer stuff removed at the same time as the j pouch construction. A very fussy friend of mine wants to be the anesthesiologist. She had the same cancer surgery in July. She is very concerned about how long the double surgery will be and won't be shy about expressing her opinions to the other doctors.
I wish I had all this help and advice when I had the emergency total colectomy. Three doctors in a row made the wrong diagnosis!
Not so sickly girl,
I use end user software to design sites that encourage public interaction with non-profits and appropriate public agencies. My son wants me to learn python and ruby so that I can be more competitive in the job market. I am a retired reporter and cannot stop being involved in communications. I'll be launching a new one in a couple of days. I would love any advice.
Szm

SZM, so glad you have so many advocates now -- wish you had them then too .... thinking of what my gi told me a long time ago -- you NEVER want to have emergency surgery, so much better if surgeries are planned. I hope you get a lot of rest and calm these two weeks.

Windy city when I was recovering from my first surgery I crocheted a baby blanket for my new niece.... told my brother it was coming, and when he got it he said something along the lines of, "This is really nice, to tell you the truth when YOU said you were making a blanket, I didn't know what to expect" (meaning, something considerably less than "really nice."). I think he was also thinking of that horribly scratch acrylic yarn from when we were kids.... most everyone had a totally uncomfortable crocheted afghan in their living room.... but my lack of craftyness was in there too....

I was just reading about crocheting triangles "from the point," which sounds like knitting on the bias....

I am also intrigued by the math involved in doing things like creating new stitches .... and I often think that crochet, knitting etc have been mathematical outlets for women throughout the ages, when often there weren't many others. I have a not-so-mathematical colleague who writes about Jane Austen, who really liked this notion.... she has thought a lot about the role of needlework in these novels, and this was a new angle for her.

I am playing w/an idea for a teaching math article on exploring things like the surface area of a sphere using crochet.

Oh, and I did start learning Python a few summers ago..... so far behind in these matters....

It's a computer programming language.

Bluegrass,
I really like your article proposal. I wish I knew more about crocheting.
Szm