Another Colon Cancer Newbie

[Colonless in NY]

Hi all:

I've been lingering on here for a few weeks now. From what I can see, this is the single best resource I've seen online for colorectal cancers. The forums on this board have provided me with a wealth of information and a couple of really good laughs as well. I'm full of questions and apologize if anything I ask has already been covered on the board.

By way of introduction, I'm a 43 year old woman who recently (July 1, 2010) had a total abdominal colectomy with ileorectal anastomosis. The surgery went well and I'm fortunate that none of my lymphnodes were infected. At age 41 in 2008, I had endometrial cancer (Stage IIIc) and underwent a total hysterectomy, pelvic radiation and 3 months of chemotherapy. Soon after my hysterectomy, I had genetic testing and learned that I have Lynch Syndrome (HNPCC), so the colon cancer was not completely out of the blue. I just didn't think it would come as fast as it did.

The recupertion for the colectomy has been hard. Draining -- and I mean that quite literally as well as emotionally. I have anywhere from 12 to 25 bowel movements a day. Everything I eat passes right through. I also have a weird sensation in my rectum after a bm (which are always watery) that there is something else there, something more that wants to come out. But there is nothing there. The pain is excrutiating when this happens. I've been checked and there is not any type of blockage and the surgeon says I'm healing well. Has anyone else out there experienced this? Also, in terms of nutrition, I'd love to hear your thoughts, tips, etc. I'm a relatively healthy eater. I was recently given the green light to start to re-incorporate vegetables and fiber back into my diet, which I've been doing slowly. Truthfully, everything has the same effect on me. I can eat a piece of white toast or a piece of broccoli and, regardless, I'm back in the loo 20 minutes later.

For those of you who've had colectomies, how long before your bm's were back to normal and / or had some type of formation? What are your energies level like? I will return to work in mid-September, 2 1/2 months after my surgery and I'm already filled with an enormous amount of anxiety about how my bowel management will be.

[Jon Olis]

Hi,

I'm a 6 year cancer survivor from Stage IIIC colon cancer and FAP. I have an IRA like you. Sounds like you are about 4 weeks out from surgery which is not a lot of time. The digestive tract is such a fragile system that gets upset from the surgery. My experience is things continued to improve for a few years. For me, early on, things were all liquid and I had similar sensations where something needed to come out but nothing was there. I think its just inflamed or something from the acidic nature of the output. Here's some things I'd recommend right away.

- Buy metamucil wafers and start eating 1-2 wafers with each meal
- start taking immodium 2 pills in the morning, 2 at night to slow things down.
- go online and buy some calmoseptine lotion to put down there to protect the skin. Its a barrier so you use it before problems start and it helps a lot for the pain.
- go to this website and learn about the differences between soluble and insoluble fiber. Soluble fiber is what you want now. Soluble fiber absorbs liquid and you have too much liquid output. Your colon used to take the water out and the small intestine will pick up these duties eventually but that takes time. Here's the website...

http://www.helpforibs.com/supplements/sol_fiber1.asp

Other recommendations I've heard is to eat the wafer but don't drink lots of liquids with a meal. Wait at least a 1/2 hour. I don't really follow this one but it makes sense.

With time you can get off the Imodium, you won't need the calmoseptine. I still take the metamucil but am actually experimenting not taking it now (2 days so far) since I'm out and more is on order but won't be in for a week.

For me, the IRA has been very manageable. Hopefully my suggestions will get you moving in the right direction (or get things not moving, pun intended ). FYI, I mountain bike ride/race and I'm on the bike for 2+ hours at a time in the heat. I hydrate fine and don't ever find I need a bathroom. Eventually you will just get used to your new normal but trust me, you aren't there yet. Feel free to PM me for more info. I'm happy to help any way I can.

[SkiFletch]

No experience with a total colectomy here, but I did just want to welcome you to the board and say we look forward to sharing with you

[MarkS.]

Hang in there. I also found myself going to the bathroom quite a few times immediately after the surgery (almost 8 -10 times a day), and was starting to get a little distressed about it. I spoke to my Onc and he said that that is quite normal after the surgery and it can take 4-5 months to get to my "regular" pattern. Of course each person heals differently.

I'm been keeping a journal ever since my surgery and I am now down to 3-5 times a day (I'm 7 weeks out). Each day gets better......

[mymaria]

Welcome!!! I was 43 last summer when I was diagnosed with uterine cancer (stage 1B grade 3) and had the radiation treatments also. Four months later, I was diagnosed with colon cancer, stage 2A. I also have Lynch Syndrome. Welcome to the forum!!! Not glad you have to be here, but glad you found us!

[Terry]

I can't believe all of the newly diagnosed people, it's unbelievable! I'm really sorry you and all of the other new ones have to be here.

I didn't have your type of surgery, I had an excision but even with that I remember having that feeling of never feeling like I had expelled everything and it was a little painful for me but not a lot. It did get better though, one day I woke up and it was gone, I'm sure that's probably what will happen to you also.

Good luck through your journey and if you have any other questions or just need to vent, we're here for you.

Terry

[Colonless in NY]

Thanks everyone. The nutritional tips regarding soluble vs. insoluble fiber have been especially helpful. I've spent the past two days adhering more closely to a soluble fiber diet, which has been much kinder to my body. Also, the Metamucil wafers have been a terrific supplement. Things a slowed down just a little, which, as far as I'm concerned, is huge.

[Sinfulsot]

A fellow brooklynite. Well, I escaped from NY, and am now in RI.