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Cancer: Colon Message Board

Cancer: Colon Board Index

Hi CatAZ! (And any others who may be interested):

Hope you're in the mood to read, cause this is gonna be a long winded response to CatAZ's q's!

When I have a bowel obstruction, my symptoms are that I don't have any bm's for days, but I do have liquid seepage and sometimes alot of it overnight. Also, I am unable to eat due to the gas pain and bloating and the final symptom is to vomit. In my experiences, the first course of action in the emergency room is usually to place a naso-gastric (NG) tube. This is supposed to assist with removal of bile and/or air that has filled the stomach with nowhere else to go. Then I am hooked up to IV to rehydrate and cannot have any food, only some ice chips now and then. Sometimes this alone has worked for me in the past. If it doesn't work, a variety of enemas are then introduced. One or both of these worked for me the first 2 obstructions I've experienced.

The 3rd time, I went to the hospital prior to reaching the vomiting point, to try to get treatment sooner. I asked if there was some other method to treat other than an NG tube. My gastroenterologist said they wanted to place the tube to get rid of any built up pressure to help me feel better, so I let them do it. However, nothing came out of it after 3 days and I begged them to remove it, as it is very uncomfortable. Besides having to drag around the IV when I had to urinate (from all the IV fluids), I had to unhook the gross tube from it's catch basin. They still administered several types of enemas rectally. Still nothing happened. This was my worst obstruction and in retrospect, I believe it was a slow building obstruction that occurred over a period of about 6 weeks. I had gone to the ER 6 weeks earlier and was sent home with a diagnosis of 'distended abdomen'. I now know in my heart that my obstruction was just beginning, but it was misdiagnosed. I have really learned to be in tune with my body's signals and I can tell when an obstruction is coming on now.

Back to my 3rd experience. After nothing else worked, by g.i. doc prescribed an IV drug called neostigmine. I think he prescribed 2 mg, but don't quote me on that. I don't know if it was that drug or the culmination of all of the other enemas, etc., but I was immediately running to the bathroom and unclogged-hooray! I picture it like those Drano commercials, when the chemicals hit the clog and it whooshes away. That's how I felt. The stomach pain went away, but the lower you-know-where pain began after the first few times in the bathroom. My entire g.i. system was beyond full this time and I was in the bathroom a whole lot. Once things calmed down and the bm's became a bit more solid, I was allowed to have liquid diet, then soft foods. Once I could keep down soft foods, I was released.

The 4th time, I refused called my g.i. doc before I went to the ER and told him I did not want to have the NG tube, just the neostigmine. He contacted the ER staff with those instructions. So they just made me comfortable and admitted me, because I guess patients receiving this drug must be on a cardiac-monitored floor. I think because the main purpose of the drug is for the heart, but a side effect they have discovered is that it helps the g.i. system. Anyhow, I was given the IV neostigmine, but in smaller doses over time and had to suffer until enough of it got into my system to work. That was my last obstruction and I know if I get another one, I'll insist on the higher dosage right off the bat so I don't have to continue suffering.

Next subject - pretty much anything I eat sends me to the bathroom within 20 minutes of finishing the meal. I haven't really pinpointed certain foods that are worse. The numerous x-rays my g.i. doc. has had done show that my g.i. tract is always completely full; other tests have determined my digestion is very slow; and I have noticed that it takes a long time before I can 'see' certain foods in my bm's--like 5-7 days after I've eaten something, I'll see some evidence of it and think back 'hey, I ate that last Thursday!'. It still surprises me.

I have not worked since my diagnosis on March 31, 2005. I am still on long-term disability from my company. They terminated my employment in (I think) April, 2006, but I am still covered under the company's disability carrier. I am on COBRA healthcare, but that will be expiring next month. My company's policy required me to apply for Social Security Disability to continue receiving benefits. I was denied twice and until recently was awaiting a hearing before an Administrative Law Judge with SSA. I just found out Friday that I received a favorable decision! I won! Now the disability carrier will reduce the amount they pay me by the amount I receive from Social Security. I will still receive the same amount, it will now come from 2 sources instead of one. The judge made the determination that I am disabled for my former job and any other job due to my urgent need to get to a bathroom often and the fact that I have 15 to 25+ bm's per day, which when he figured out an average time that I'd be spending in the bathroom per day, I would lose nearly a whole day of productivity out of each week, and that's how he determined my eligibility. He didn't even think about the number of days I might be out sick due to my issues, but I'm sure I'd miss at least 1 more day per week. I am glad I finally got the decision I was waiting for. Although, I think contacting my Congressman had something to do with expediting the decision. I was told my by atty. that there is a 6-18 month backlog in getting hearing dates assigned and I was approaching the 14 month mark. Someone, and I really wish I could remember who (so I can thank them) told me to email my Congressman and see if they could do anything to help speed up the process. I think it worked, and only wish I had done it sooner, but very thankful and relieved that it is complete now.

I am pretty sure I would have had the radiation even if someone had warned me about the problems. I would of course, have discussed the pros/cons with my husband, but pretty sure he would agree. We had a 2-year-old daughter to raise so there was no way I was not going to use every weapon in my arsenal to fight my cancer. It took us 10 years to finally get pregnant and have her (we were about to consult a fertility specialist and I missed my period!). I was only 38, alot of living left to do.

I did seek a second opinion on the surgery, because the first surgeon I saw was a general surgeon and was going to cut out the rectum and attach a colostomy with no other options. I had done my homework, having worked in the pharmaceutical industry for 17 years and knowing many doctors and nurses, I had some wonderful guidance. I asked my second and ultimate surgeon, who was an oncological surgeon with experience performing a sphincter-sparing procedure, which I had read about, if he agreed with my oncologist's plan for concommitant radiation/chemo, followed by surgery, then a 2nd round of chemo. He said it sounded like the norm for an agressive treatment plan. I was staged at 3 with some 4, no nodes. My surgeon stated that my tumor was ping-pong ball sized and that based upon studies of tumor growth rates, mine was cancerous for 5 years and was a polyp for 10 years prior to that! The best news he gave me was that I had a 100% chance for cure, with 80% chance of NO recurrence with the whole treatment plan. I had a temporary ileostomy too, for 9 months. It grossed me out from the beginning, but I began to get into a routine of caring for it. I had alot of trouble with it. My bag would burst in the middle of the night from filling up w/gas, my paste and rings wouldn't stick well enough and I had several embarassing leaks. My skin was so sensitive to the adhesives that it was raw and bleeding for most of the 9 months. And, my very first obstruction was just before it was to be surgically taken down and I was going to be reconnected.

Not sure if I've had a proctoscopy. My cancer was in the rectum, all the way down, where the sphincter muscle is, so I'm pretty sure they can just take a look to see how my anastomosis is doing (I know, gross--but isn't most of this? Never thought I'd be talking about my own poop so much in my life! I thought being pregnant and examined down there for that was enough of a dignity testing process-butt (get the pun?) this is ridiculous!).

I am very unwilling to go back to a bag, which my g.i. doc keeps telling me will improve my quality of life. I just remember the problems I had and even though that was a temporary bag and was only meant to last a finite period of time, I just hated dealing with it. Not to mention the turn-off sexually it is to see. Not that sex has been a part of my life with things the way they are now either...

Oh, I had a couple of ports. My 1st one, which was placed by that 1st surgeon I didn't end up staying with, got infected 1 week before my 1st round of chemo was to end and had to be removed. They put in a PICC line for that remaining week and they are temporary. Then I had another port placed after surgery to remove the tumor/rectum--when I was having my 2nd round of chemo. I had it removed when they took out my illeostomy. I also asked if they could remove my gallbladder, since they found stones during one of my many tests and I had been having pain. So I was planning to have 3 procedures done at one time--but they found an umbillical hernia when they opened me up and had to repair that too--so I had 4 things done in one operation!

When I gave birth, my OB tried to induce me for 3 days. She finally had to perform a C-section (In hindsight, once again (another pun too!) I believe my cancer was the cause of my fertility problems and my inability to respond to the induction drugs). It scares me to know that I had cancer while carrying my daughter. So my c-section scar is horizontal and pretty much unnoticeable now, just above the hairline. But my other scars make me feel disfigured. I don't mind the one from the ports (they were both placed in the same area, to minimize the number of scars). The stoma scar is minimal, but is still discolored like a bruise-that I can deal with too. My issue is with the long, jagged, stapled scar that extends from just below the center of my ribcage down to my c-section scar. It goes around my belly button. I liken the appearance on my stomach to 3 butts in front and 1 (the only 1 I should have) in back. One side of my stomach at the bottom is larger than the other (the opposite side from where my stoma was), so I'm uneven on the left and right sides and the scar is still painful, in addition to not being straight. It is definitely better than it used to be, but I would have plastic surgery in a heartbeat if it was something we could afford, like a luxury. I just can't justify spending the money on it in my own mind. I'd feel as though it was an unnecessary expense.

Oh, maybe I forgot to mention, my husband quit his job when Michelle (our daughter) was born to become a Stay-At-Home Dad. It was always our "5-year plan". My career was going really well. We paid off our 1st mortgage early, moved to the neighborhood we wanted our daughter to go to school in (more $, better schools). Things were really good--then I decided to have my bunions fixed to prepare for our someday family vacations which would require alot of walking. Just after that is when I got my cancer diagnosis (went to the OB for my annual exam, thought I had hemmoroids still from my pregnancy-she said nope--it's cancer unless is proven otherwise-go get a colonoscopy). But I regress. I am glad my husband was/is not working though. We both needed him so much in these past 3 years. I still have days I wouldn't be able to handle taking care of Michelle now and then and it helps to not have to worry about it. All 3 of us have benefited so much from being together all this time. Of course, it is sometimes hard to be around your spouse 24/7 for 3 years and we get on each others nerves, but we have endured. Michelle is starting school this fall and my husband is looking for work, which was also in the plan.

I lost 80 lbs during treatment. I tell people that it was the best diet I've ever been on, but I wouldn't recommend it to ANYONE...My low point was 115 lbs, and that made me look emaciated. I was stabilizing at 135-145 until recently. I wouldn't term myself 'physically fit' at least since I hit my 30s. But I wasn't ever sick more than the usual cold now and then prior to the cancer diagnosis.

There is no history of cancer in my family-I am the first. I have 2 older brothers, 2 older sisters and 2 younger sisters who are fraternal twins. I could have had genetic testing done, but insurance wouldn't pay for it. I told my bros/sis to get colonoscopies. Some did, some didn't. My dad also. His was negative as were the siblings who got tested. The others are either scared or just prefer not to know.

Sounds like we have had many similar experiences and are in close to the same stage of survivorship (if that's a word?). Did you ever go to a support group? I didn't. I did have a few people in the infusion room that had same cancer when I was having 2nd round of chemo and we talked. I used to email one of the ladies, but we have since lost touch. Others, I have been sending Christmas cards to since we met, but haven't heard from them since treatment ended. Everyone moves on in their own way, I guess. I ask about them when I see the nurses at my oncology office and they are doing well, which makes me happy.

Where in AZ do you live? We were just in Tucson in June to visit my bro-in-law, his wife and their grown daughter. They have the oldest daughter in my husband's side of the family and we have the youngest. I also have a sister in the Phoenix area.

How old are you if you don't mind my asking? Not that our topics have been the least bit taboo to begin with!!!

My fingers hurt now, so I'm going to stop typing for a while. If you come up with other q's, just ask and I'll do my best to answer. Especially if you want to know more about disability, I'll let you know more of my experience and maybe it will help you out in some way.

Take care and "talk" to you later,


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