Advice would be very much appreciated

[Patty]

Hi all! I have been reading this board for several months but this is my first post. I am a 59 year old woman who has had tonic/clonic seizures since the age of 14. The seizures' frequency and violence is only made worse by meds so I live without any seizure control. On Christmas Eve I was diagnosed with rectal/colon cancer (the last thing in the world I was expecting; still in shock and crying). My doctor has informed me that he intends to initially remove my rectum and put me on a colostomy bag. I am now reading on the internet about living with a colostomy bag, what it is, etc. and am concerned what will happen to it when I have a seizure. I can only imagine that it will be torn from my body at the site.The seizures are unavoidable. I live alone. Does anyone have any knowledge of someone with epilepsy who has lived with this issue? Either successfully or unsuccessfully. I am thinking the surgery is not wise. I would really appreciate any information you could share.

TIA

Patty

 

[RobinN]

Hi Patty - Welcome and glad that you decided to join us.
So sorry to hear of your diagnosis. Have you done any research to find out if there have been any healing stories?

I do not have a recollection of anyone that has posted here, but perhaps it is not something that is shared in public or was before my time. I hope someone has info for you.

 

[Patty]

Hi Patty - Welcome and glad that you decided to join us.
So sorry to hear of your diagnosis. Have you done any research to find out if there have been any healing stories?

I do not have a recollection of anyone that has posted here, but perhaps it is not something that is shared in public or was before my time. I hope someone has info for you.

Hi Robin. Thanks so much for answering. I am so scared. I know nothing about colon cancer except what I have learned on the web in the last 48 hours. This was thrown at me on Christmas Eve following up on an ER visit the previous Friday during which it was never so much as hinted at. Apparently the most important factor in determining survival of colon cancer is early detection. And it can advance pretty far without displaying any outward signs. So, a regular colonoscopy (I had one 30 years ago ) is important. My concern is what could happen to the incision site of a bag during the course of a grand mal seizure. I know the trouble I have gotten into during seizures on my own!

I apologize if my post was inappropriate. Please forgive me. I am feeling desperate at the moment.

Thank you for your time.

Patty

 

[alivenwell]

That's a very valid question. With the bag attached, how does your system absorb medication? Will it be via your stomach only or are they adding alternative methods (injections, Diastat...etc.) to provide you with drugs to control the epilepsy?

It would seem to me that the primary objective is to control the epilepsy and also remove the cancerous tissue simultaneously. Maybe up until now, the cancerous colon tissue was unable to absorb epilepsy medication.

You're absolutely right about early detection.

Personally, if the seizures are under control now, it probably would be a good idea to get measurements of ideal blood levels of those medications you currently are taking until the bag becomes attached. I would imagine it would be highly critical for you to know those levels.

 

[brain]

:hello: Patty,

Welcome to CWE, and so sorry you had
to hear this news and it had to be heart-
breaking to learn of this. In addition, one
thing you would need to do is go over and
cover all the bases with your Doctors and
making sure all the fields are covered. I
know it is all frightening enough and even
more so when one is alone; but please do
inquire in regards for support and assistance.
I am pretty positively sure they will be there
to assist and help you. Modern Surgery has
come a tremendously long ways and has
progressed and advanced far more than you
can imagine in many, many areas! So please
do consider some alternatives and look into
that areas as well. Will keep you in thoughts
and prayers!

PS: Make sure your Neurologist or Epileptologist
is aware of this as well as your Primary Doctor
and all of your Doctors who are treating you as
well!

((((((( hugs ))))))))

 

[Patty]

That's a very valid question. With the bag attached, how does your system absorb medication? Will it be via your stomach only or are they adding alternative methods (injections, Diastat...etc.) to provide you with drugs to control the epilepsy?

It would seem to me that the primary objective is to control the epilepsy and also remove the cancerous tissue simultaneously. Maybe up until now, the cancerous colon tissue was unable to absorb epilepsy medication.

You're absolutely right about early detection.

Personally, if the seizures are under control now, it probably would be a good idea to get measurements of ideal blood levels of those medications you currently are taking until the bag becomes attached. I would imagine it would be highly critical for you to know those levels.

Thank you so much for your post, alivenwell. I am not on any meds and my seizures are not controlled. I have been on maybe 10 different meds and had horrific side effects (eg. blood vessels in brain swelling on tegretol), while my seizures either always remained the same or became worse. I am better on nothing. But, I still have the seizures. My fear is that, if I agree to this surgery, I will be combining the bag attached to a surgical site with grand mal seizures and living alone and I am concerned about really doing some damage to myself during a seizure. I wondered if anyone had dealt with this or knew someone who had.

Thanks again.

Patty

 

[Patty]

:hello: Patty,

Welcome to CWE, and so sorry you had
to hear this news and it had to be heart-
breaking to learn of this. In addition, one
thing you would need to do is go over and
cover all the bases with your Doctors and
making sure all the fields are covered. I
know it is all frightening enough and even
more so when one is alone; but please do
inquire in regards for support and assistance.
I am pretty positively sure they will be there
to assist and help you. Modern Surgery has
come a tremendously long ways and has
progressed and advanced far more than you
can imagine in many, many areas! So please
do consider some alternatives and look into
that areas as well. Will keep you in thoughts
and prayers!

PS: Make sure your Neurologist or Epileptologist
is aware of this as well as your Primary Doctor
and all of your Doctors who are treating you as
well!

((((((( hugs ))))))))

Thank you so much, brain. I am trying to get my feet on the ground. This has come so quickly. My only doctor is a General Surgeon who is all ready to go. I don't have an Epileptologist anymore nor a Primary Doctor ($$$). I have Blue Cross but no coverage for meds. My cousin is screaming for me to go to a cancer center (Siteman) that we have here (St. Louis) before anything that can't be undone is done.

Thanks again,

Patty

 

[drarvindr]

Dear Patty ,
First of all , welcome to CWE:hello:. I'm very sorry about what you've had to deal with , especially in the holiday season. I agree that you should think twice before other interventions. In my experience , surgeons live by the motto " when in doubt , cut it out".colon surgeries are for the most part curative and require little post op chemo (5-Fu and other drugs) but if you are uncomfortable with surgery , i don't feel you should do it unless you have explored the other possibilities. Several pharma companies run drug trials , and need guinea pigs , so you can ask an oncologist to refer you if you feel meds are too expensive and the trial shows some promise. My father has Non-Hodgkin's Lymphoma and the first doctor we went to wanted to nuke him. My dad refused and we went with monoclonal antibodies. He's in remission now (knock on wood). I know personally that miracles can happen. Don't give up hope.
As for your trouble with the seizures , i don't know whether the colostomy will have adverse effects as far as your seizures go. It depends on how much colon he is removing. If you feel that you are not getting adequate health coverage and if you are healthy enough to travel , you can try going to other countries to see if health care there is cheaper. Drugs cost roughly the same everywhere. You definitely need a neuro consult and if your seizures are medically intractable , you may need a VNS or you can try neurofeeback or other alternative therapies . In my opinion , the surgery per se will not be dangerous for you but having a seizure in the post op period is not a desirable state of affairs , not to mention the adverse effects of some anaesthetics. You will need to discuss this aspect with your surgeon. It is very important that he remain informed of this.
I hope you get better soon and that i've been of some help. Please feel free to Pm me with any questions or thoughts. Wish you a merry christmas and a happy , healthy new year. Keep your chin up.

 

[BIGMAN131307]

Hi all! I have been reading this board for several months but this is my first post. I am a 59 year old woman who has had tonic/clonic seizures since the age of 14. The seizures' frequency and violence is only made worse by meds so I live without any seizure control. On Christmas Eve I was diagnosed with rectal/colon cancer (the last thing in the world I was expecting; still in shock and crying). My doctor has informed me that he intends to initially remove my rectum and put me on a colostomy bag. I am now reading on the internet about living with a colostomy bag, what it is, etc. and am concerned what will happen to it when I have a seizure. I can only imagine that it will be torn from my body at the site.The seizures are unavoidable. I live alone. Does anyone have any knowledge of someone with epilepsy who has lived with this issue? Either successfully or unsuccessfully. I am thinking the surgery is not wise. I would really appreciate any information you could share.

TIA

Patty

I'm sorry for your recent diagnosis. I don't know of anyone that has/had seizures & a colostomy bag together. But I do know of one that had colon cancer, then the surgery and got the colostomy bag. This person was older than you, and had some other health problems. The bag itself shouldn't be much of issue if you take care of it properly.

Keep the bag connection clean.
Use a new clean often as needed. (Depends on how often you move your bowels)
Make sure the bag is connected securely. (Make sure there is no air trapped inside)
Keep a good supply of bag deodorizers handy.

As for the surgery to remove the colostomy bag, don't count on it. In order to reverse the surgery your body has to completely heal inside & out. You cancer severity is also a factor.
The more that is removed, the less likely the surgery can be reversed. Also your age is also against you.

I'm sorry if this all sounds bit forward, but it's the truth as told by my friends doctor.

 

[Nancy]

Hi Patty -- Siteman, part of Washington U/Barnes Jewish Hospital, in St Louis is where I've had two surgeries and I cannot say enough good things about them. It's where I see my epileptologist, Dr. Rashid, and I would not change that for anything.
One of my surgeries was covered 100% by the sort of Blue Cross we had (it also covered my meds).
Please call there to make an appointment for a second opinion.

 

[Patty]

Dear Patty ,
First of all , welcome to CWE:hello:. I'm very sorry about what you've had to deal with , especially in the holiday season. I agree that you should think twice before other interventions. In my experience , surgeons live by the motto " when in doubt , cut it out".colon surgeries are for the most part curative and require little post op chemo (5-Fu and other drugs) but if you are uncomfortable with surgery , i don't feel you should do it unless you have explored the other possibilities. Several pharma companies run drug trials , and need guinea pigs , so you can ask an oncologist to refer you if you feel meds are too expensive and the trial shows some promise. My father has Non-Hodgkin's Lymphoma and the first doctor we went to wanted to nuke him. My dad refused and we went with monoclonal antibodies. He's in remission now (knock on wood). I know personally that miracles can happen. Don't give up hope.
As for your trouble with the seizures , i don't know whether the colostomy will have adverse effects as far as your seizures go. It depends on how much colon he is removing. If you feel that you are not getting adequate health coverage and if you are healthy enough to travel , you can try going to other countries to see if health care there is cheaper. Drugs cost roughly the same everywhere. You definitely need a neuro consult and if your seizures are medically intractable , you may need a VNS or you can try neurofeeback or other alternative therapies . In my opinion , the surgery per se will not be dangerous for you but having a seizure in the post op period is not a desirable state of affairs , not to mention the adverse effects of some anaesthetics. You will need to discuss this aspect with your surgeon. It is very important that he remain informed of this.
I hope you get better soon and that i've been of some help. Please feel free to Pm me with any questions or thoughts. Wish you a merry christmas and a happy , healthy new year. Keep your chin up.

Drarvindr, thank you so much for your post. First let me say how sorry I am for the horrors that recently touched the people of Mumbai. May God bless all of you. My cousin said the same thing you did about surgeons seeing the world in relation to what can be done with a scalpel. She wants me to go to the Siteman Cancer Center in St. Louis and see what they say. I've still only had the one visit with the surgeon on Christmas Eve. He announced that he was going to remove my rectum, put me on a bag, and radiate me. I see on the internet that post-operative radiation does help prevent local recurrance of the cancer but that that is offset by an increase in morbidity from other factors. The Siteman website says that they offer clinical trials. They are part of the same hospital group where I last saw an epileptologist, so perhaps I could ask for advice about anaesthetics there. In spite of my advanced age (59), I have never had surgery of any kind. But, when I offered to donate a kidney to my sister-in-law several years ago, they refused to even test me because of my epilepsy. They said they were afraid I would seize on the table. I lived in London during the late '60's to mid-'70's. The National Health is so civilized!! But I am not able to travel at this point. I have to hang onto the wall to walk to the kitchen. I am very weak. I last saw this surgeon in November of 2007. He had performed a Seton Cutting Procedure on me as an outpatient (I wanted to avoid anaesthesia) and told me I was bleeding far too much. He said he wanted to scope me after a reconstructive surgeon put my rectum back together (it had healed open). I told him that I had to sell my house and move and asked if I could do that first. He said "yes" and I finished moving in the fall. I planned to see the reconstructionist after the holidays but ended up in the ER on December 19th completely blocked by a large tumor.

May God bless your dad. Miracles do happen. I'm so glad he's doing well and pray that he will remain in remission. Forever.

Thanks again.

Patty

 

[Patty]

I'm sorry for your recent diagnosis. I don't know of anyone that has/had seizures & a colostomy bag together. But I do know of one that had colon cancer, then the surgery and got the colostomy bag. This person was older than you, and had some other health problems. The bag itself shouldn't be much of issue if you take care of it properly.

Keep the bag connection clean.
Use a new clean often as needed. (Depends on how often you move your bowels)
Make sure the bag is connected securely. (Make sure there is no air trapped inside)
Keep a good supply of bag deodorizers handy.

As for the surgery to remove the colostomy bag, don't count on it. In order to reverse the surgery your body has to completely heal inside & out. You cancer severity is also a factor.
The more that is removed, the less likely the surgery can be reversed. Also your age is also against you.

I'm sorry if this all sounds bit forward, but it's the truth as told by my friends doctor.

Thank you so much for your post, BIGMAN. It helps. I know nothing at all about this. Please don't worry about sounding a bit forward. What I need now is the truth. I need to start thinking of the immediate problem and how to best deal with it. All I have been able to think of these last few days is Tammy Faye Baker on Larry King the night before she died.

Take care,

Patty

 

[Patty]

Hi Patty -- Siteman, part of Washington U/Barnes Jewish Hospital, in St Louis is where I've had two surgeries and I cannot say enough good things about them. It's where I see my epileptologist, Dr. Rashid, and I would not change that for anything.
One of my surgeries was covered 100% by the sort of Blue Cross we had (it also covered my meds).
Please call there to make an appointment for a second opinion.

OMG! Thanks, Nancy! The surgeon I am seeing now is connected with St. Mary's. My sister-in-law had a kidney transplant at Barnes last Christmas and is encouraging me to go there, too. I was seeing Dr. Miller at Barnes for my epilepsy. When he moved to Seattle, he sent me to Dr. Duntley in the Barnes Sleep Disorders Clinic because the majority of my seizures occur within the first few hours of waking up. I liked Dr. Duntley but I kept reacting to the meds, one after another, and had to be taken off. In the end, he said he had one more drug for me to try but that it did have bad side effects. I said, "No more. I'm done." This was in 2003.

I'm so glad you are having such success with your treatment. My very best wishes to you for a wonderful life.

Thanks again,

Patty

 

[Bernard]

Hi Patty, welcome to the forum. :hello:

I don't recall running across anyone with your particular situation.

 

[RobinN]

A study led by Kimmie Ng, M.D., M.P.H., of the Dana-Farber Cancer Institute has found that colorectal cancer sufferers with high levels of vitamin D had better survival rates during a follow-up period when compared to those with low levels of the vitamin. The study also involved the Harvard School of Public Health, Brigham and Women’s Hospital and the Medical University of South Carolina.

http://www.naturalnews.com/024442.html

In 1990, the highly respected German epidemiologist, Dr. Ulrich Abel from the Tumor Clinic of the University of Heidelberg, conducted the most comprehensive investigation of every major clinical study on chemotherapy drugs ever done. Abel contacted 350 medical centers and asked them to send him anything they had ever published on chemotherapy. He also reviewed and analyzed thousands of scientific articles published in the most prestigious medical journals. It took Abel several years to collect and evaluate the data. Abel’s epidemiological study, which was published on August 10, 1991 in The Lancet, should have alerted every doctor and cancer patient about the risks of one of the most common treatments used for cancer and other diseases. In his paper, Abel came to the conclusion that the overall success rate of chemotherapy was “appalling.” According to this report, there was no scientific evidence available in any existing study to show that chemotherapy can “extend in any appreciable way the lives of patients suffering from the most common organic cancers.”

http://www.naturalnews.com/023689.html

A study of grape seed extract found that it inhibits the growth of colorectal tumors in cell cultures and mice, reported researchers in the Oct. 18 issue of Clinical Cancer Research.

The scientists administered the grape seed extract to two different human colon carcinoma cells and recorded an inhibition of cell growth dependent on time and dose.

"Beneficial effects were correlated with how much extract was used and how long it was used for," said lead researcher Rajesh Agarwal, Ph.D., professor in the Department of Pharmaceutical Sciences at the University of Colorado Health Sciences Center in Denver, adding that there was a 92 percent reduction in live cells when the highest dose was administered to one cell line for two days.

http://www.naturalnews.com/020812.html

Ginger is one of several powerful healing foods that exhibit strong, well documented effects on the human body. In this case, it's being shown to inhibit the growth of colorectal cancer cells.

http://www.naturalnews.com/000366.html

http://www.naturalnews.com/colon_cancer.html

Colon Cancer Alliance

http://articles.mercola.com/sites/articles/archive/2004/03/27/bacteria-gut-cancer.aspx

 

[RobinN]

The major problem here is that one requires an effective treatment program once colon, or for that matter any, cancer is identified. Unfortunately, the traditional paradigm is many years away from accepting and embracing the physiological fact that most sugars and grains that rapidly break down to sugar will accelerate cancer growth and impair its resolution. This is discussed in the first two links below.

The first step in treating any cancer is to remove the sugar and grains from your diet. To many this may seem like an unachievable task, but there are many approaches that make this quite easy to do.

The first is to understand your Metabolic Type and eat accordingly. Once your body is receiving the right fuels in the right combinations the desires for sugars decreases dramatically. The cravings are actually major clues that you are not giving your body the right fuel.

The trillions of cells in your body are screaming for fuel when you are not eating for your nutritional type. Sugar can satisfy those cravings in the short-term, but it has devastating long-term complications.

Eating every two hours is also a useful strategy when you are weaning off of sugar as that is typically enough to compensate for the insulin hypoglycemia rebound cycle that results in many of the side effects of stopping sugar.

The other challenge that many have even if they are eating the perfect foods is that they will use food for reasons other than nutrition. Many use sugar as comfort food to address some of the emotional challenges and struggles they encounter.

I have found EFT to be particularly helpful for this issue, and you can review my free 25-page EFT report to learn more of how to apply this useful tool.

It is important to recognize that my EFT manual is not meant to provide a comprehensive treatment program, but merely serve as an introduction to EFT. If you have some serious issues it is strongly recommended that you find an EFT professional to help you. Gary Craig has a list of EFT Practitioner Referrals from the U.S. and the world. Many of these therapists even offer a free 15-minute phone session in which you can ask them questions to see if you connect.

Cancer is no different from any other chronic degenerative illness. It requires addressing the foundational basics of diet and emotional balancing. I don’t specialize in treating cancer patients, and I realize that very complex individualized treatment regimens are necessary for successful resolution.

However, in my experience sophisticated regimens invariably fail if careful attention is not paid to the optimization of dietary and emotional issues.

The other key is to address the problem early on. Colon cancer is particularly easy to treat if caught early. If you find a polyp with colonoscopy while it is still small, the "cure" rate is very high.

Similarly, nutritional and emotional interventions are far more successful if employed early on in the treatment.

http://articles.mercola.com/sites/articles/archive/2003/03/29/colon-cancer-part-two.aspx

 

[Patty]

Hi Patty, welcome to the forum. :hello:

I don't recall running across anyone with your particular situation.

Hi there, Bernard! Thanks for the welcome!


Patty

 

[Patty]

Thanks for all the info, Robin! I really appreciate it.


Patty

 

[RobinN]

Just remember there are miracles and you too can join that club. Just continue to hope, pray, and believe.

 

[CindyD]

Hi Patty

I am sorry for your news, but you have found some very supportive and friendly people here on this forum. As for the colon surgery. My maternal grandmother had to have both her bladder and colon (large and small) removed at the age of 65, and I just want to let you know that she never let her stop that from living her life to its fullest. She loved to dance and was a very social person. She continued to do the things she loved but she was also wise enough to stay with her doctor, take her medications as ordered and keep her appointments. I'm not saying she didn't have any problems over the years, but she did live to the ripe age of 88 and danced, traveled, dated, and did whatever else she wanted. She just had to make a few adjustments in the way she ate and how she managed her personal health, etc. I hope this was an encouragement to you that even though you have just received some devistating news, you can decide to whether to let this news beat you or you beat this news. You take good care of yourself and I look forward to reading many posts from you in the future.

Big Hugs,
Cindy