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Super01Mom's Message Board Messages

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Hello,

I was diagnosed with  T31NM0 June 2008, my cancer was very near the anus as well, I had a LAR done thru the abdomen with a colostomy. My take down was performed Oct. 2011, and since then I have experienced bowel incotinence. I had tests done recently and it showed severe nerve damage and nearly no muscle control around the spincter muscle. Would the damage of happened if they went thru the anus instead according to the surgeon when you have a low tumor, your chances of nerve damage and muscle damage is very common no matter what route you take. I am trying a new treatment which is a nerve stimiluator hopefully it is successful because my alternative is having the colostomy placed back to avoid the issues I am having. I would discuss all the pros and cons with the surgeon and make sure you have a colon/rectal specialist and not just a general surgeon. Good luck and let us know how it turned out.

Sheryl

For my vomitting I was given phenegran and for the diarrhea I was given lomotil, nothing else worked for either. I would ask the doctor for the prescription. Make sure you are getting plenty of fluids down as much as you can tolerate. Good luck!

Sheryl

I have had a Picc Line on more than one occasion. My experience with Picc Lines is it wasn't much worse than getting an IV. I had it placed in my arm above the elbow, they used a topical to numb the area, it was done by a nurse and I recommend it to anyone who is a hard stick or is going to have to be stuck several times, I was able to have my blood draws done thru the picc line, all antibiotics and it is far better than being stuck multiple times. So don't worry , no big deal and you will be thankful that you did it.

Sheryl

Fran,

Sorry you are having such a hard time with the leaking. You are right everyone's body type is different and believe me I know. When I had a broken leg I just wanted to shower and well you know you can't shower with a cast on, so I found a product that you put over the cast to prevent it from getting wet, so I thought I would look into a product to put over the bag. I did find a product with Hollister, that you place over your stomach area to prevent the seal and bag from getting wet, so I could shower and not have to change the seal and bag every time I did so. It did help, I can't remember the name of it though, sorry but I did purchase it from Hollister. If you have their catalog or go online you should be able to find it, or even better you could call their customer service line and a sales person could help you. I loved thier customer service dept. they were always very helpful. I hope this helps, whatever works right? Sometimes it is just trial and error.

Sheryl

First off I am so sorry you were diagnosed with cancer, the word cancer is so scary and most people associate it with death. Do not give up hope. Have you tried calling the doctors office and talking directly to the doctor? I can't imagine a doctor giving you a diagnois of cancer and then turning his or her back from you. I know when I did not biopsy they do not stage your cancer at that point, usually have to go thru more testing , in my case it was the removal of the tumor and the lymp nodes before I had a staging. If this doctor is not willing to work with you because of insurance issues, then you need to find a doctor that will. You can get state assistance if you are uninsured and qualify, going thur Social Security takes a very long time and you need to act quickly. When I went on disability it took me over two years to get approved, most people do not get accepted the first try, no matter what the disability. If you are older and already on social security you can get medicare, which will pay for the medical expenses and the medications depending on what plan you are on. But I would seriously be proactive with your health right now, if you are unable to get your family to help out with getting all your questions answered, when I was diagnosed my entire immediate family went to the visit on my consultation appointment , they answered all our questions, inform us on the best treatment plan for myself, and not only provided medical assistance but also psycological assistance because it doesn't just affect your body, but your mind too. Please act quickly, because at this point you know nothing, do not assume anything, just act please.

Sheryl

Like everybody else already said you must have a colonostomy to rule out polys, colon or rectal cancer, infection, it could be all kinds of things....can't believe they haven't already given you the tests with the syptoms you are discribing. My colonostomy saved my life, and because of my early detection of cancer it saved my younger brother's life as well. This is nothing to play around with, call your doctor immediatly and demand the test, I don't care of your age, this can hit anyone , in any age group. So please do this now.

It's too bad you can't get in Austrlia, here in the states it varies from state to state. I live in California and it is legal to have a medical marijuana card here, although with all the regulations and rules once you do find a good supplier they are closed down because they didn't dot all their I's and cross their T's. I have never thought of using the oil, we use the oil to make a base  to make ateables, such as brownies, cookies, I did hear someone say they used the oil on salads, might be worth a try. I don't smoke it because just not my thing but the pills helped me the most, they have different strengths, and different types stativia and indigos, depending on what you are using it for they tell you which to purchase. My daughter uses it for her fibromyalgia, and it has done wonders for her, we had taken her to several different doctors and they put her on all kinds of medications but nothing worked until we used the medical marijuana, and because of her success when I developed colon cancer and was so sick, couldn't keep anything in my stomach, very weak and my whole body ached with severe pain this was the only thing that helped me get back to myself. I also used the lotion, made with the oils, I would rub it on the sensitive areas and within seconds I could feel a difference. So if you are able to get it, it does work. I was a skeptic and I worried about what other people would think before, but after getting cancer you got to just think of what works best for you and not worry about what others think. So, good luck to you all and please let us know how your husband is doing.

Sheryl

I wish you all well, I hope your experience isn't as bad as mine was with leaking bags, bags that would fall off, skin rashes, I even got a staff infection around the stoma, that I got courtesy of Balboa Military Hospital. I tried all kinds of diets to try to ease the diarrhea issues, no dairy and gluten- free helped some, immodium wouldn't do anything for me took the max per day, switched to lomotil a prescribed medication that helped a little better but maxed out on that too. I was told also in around 4 months they would reverse my colostomy but I ended up being attached to the bag for over 2 1/2 years. My issues with leaking bags got so bad I told my doctor the next time he saw me I was going to have a black trash bag around my waist attached with duct tape around my stomach, gotta laugh but it was so frustrating, humiliating, ruined my clothing. You know they really need to figure this out too many of us have this issue, my surgeron seems to think it is because of the smaller colon, well at least for me they took several feet of my colon when I had my lower anterior resection. Even after my reversal I go several times a day , still a prisoner of my bathroom, don't know what is worse the bag or sitting in the bathroom all day, and for me my spinkter muscle was damaged so when I have leaky stools I have no control, sometimes I think why did I ever have it reversed, the surgeron wants me to consider going back but I just don't know what to do anymore. I hope you ladies have better luck. At least we have each other for support on this forum, it's nice to know we are not alone and someone else understands exactly what you are going through. God Bless ladies, and you are in my prayers.

Sheryl

Fran,

I will look you up on facebook, I am on there too. Good luck!

Sheryl

Fran,

I had to use the paste by Hollister to help the seal stay in place, however this did not work on every occasion. I had severe diarrhea, it would make the seal very hard to stay in place because of the leaking, and my colostomy was on the left of my belly button, not even an inch away from belly button, making it nearly impossible to keep the darn thing sealed. My specialist I have now said it should of never been that close, because of seal problems, he said even without the diarrhea issues, it would difficult to keep it sealed, my ostomy nurse too was at her wits end. One thing that also helped was after cleaning the stoma, I would use the powder let it air dry for a couple of minutes, then cut the seal to the right size, this is also important, do not cut too big or too small or you would have a difficult time keeping the seal. I used all kinds of products but Hollister was the best fit for me, everyone is different, you will just have to play with it until you find the right fit. I know it is frustrating I didn't want to leave the house because I was afraid of a leak, I would have to pack a  bag of supplies, and extra clothing just in case, but it is better to go out even if something happens than to be trapped at home 24/7, that is not good for the soul, and this game is not all medical, our mental attitude has a lot to do with it. Keep your chin up and if you need someone to talk to feel free to send me a private message as well. Good luck and God Bless.

Sheryl

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About Super01Mom

Patient
Colon Cancer

I was diagnosed with colon cancer in April 2008. My first surgery the LAR was performed June 20, 2008, where the cancer was removed. When I awoke 48 hours later, my surgery turned into 12 hours not the 4-5 hours that was promised. Apparently there were complications, and they lost me at least once during the procedure, although my medical records that I asked for did not indicate any complications and half was either missing or blacked out, yes how can they black out your medical records, first red flag. Anyway...10 days post op an intern came into my room performed an unauthorized procedure and well all hell came loose, literally, my stomoach pretty much blew up and I developed a rectal/vaginal fistula within a few hours I was rushed into surgery, they couldn't fix the fistula because the skin was not viable, they would have to leave it for further surgery down the road. They did have to give me a colostomy at the time, because the LAR fell apart and they had to remove more of my colon. I thought this was the end of it, but 7 days later back to the operating table for another surgery, it came apart again...My recovery was long nearly 5 weeks in the hospital, came home to full time nursing care, physical therapy because the first LAR, on the table for 12 hours caused nerve damage to my right side from my foot to my hip I couldn't feel a thing or more my leg. It took the hospital 4 days to send a neurologist to take a look at me, I had a compression nerve damage, it was too late to fix the damage had already been done, because they waited 4 days. I pleaded for them to call someone down but they didn't seem to think it was a big deal. I think not being able to feel your leg or move it is a big deal. So now I have right peripheral nerve damage, a rectal/vaginal fistula, and months later I found out the surgeon cut off the blood supply to the sigmoid colon, basically killing it, so the reason for the severe diarrhea, I forgot to mention that is due to the blood supply being cut off , and now it maybe nearly impossible to reattach me and get rid of the colostomy. I thought cancer was bad, the amount of damage to me now is much worse than the cancer was. I am currently in a lawsuit, which the hospital now wants to settle out of court, we'll see how that goes...but I am cancer-free thank God and still alive and kicking. I am going to be going to UCLA soon, within the next few weeks to get repair surgery, they are suppose to be the best surgeons around so hopefully I can get some relief finally. That is what I am praying for a miracle for sure. Sorry about the novel, had a lot to say. I am lucky though got a great husband, three great kids and tons of friends that support me. I am blessed.

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