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Colonoscopy with permanent ostomy.

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(@kenf11)
Joined: 6 years ago
Posts: 7
Topic starter  

Hi guys. I have a question for you. 3 years ago I was diagnosed with stage 3c colorectal cancer. 3 months chemo and radiation and then 1st surgery Nov./2016. Removed tumour and illeostomy. 1 yr later 2nd surgery and bowel removed, butt sowed up and permanent colostomy. Since the 2nd surgery we moved to the east coast. My question is this, seeing as it is 3rd year since diag.,I was thinking I should have a colonoscopy(very scary thinking cancer might return) and was wondering how they do this thru stoma? Any help mucho appreciated.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4193
 

Hey kenf11, 

I've had an ileoscopy done, but it's pretty similar to how a colonoscopy would be done when you have a colostomy.

I've written about my experience here:  https://www.veganostomy.ca/first-ileoscopy/ with additional tips here:  https://www.veganostomy.ca/ileoscopy-prep-getting-scoped-through-a-stoma/

Your doctor may have different prep instructions, so you'll want to check in with them, but the process of having the actual scope should be very similar. 

I've opted to stay awake during the procedure, since I find it interesting to watch, but it was a little painful (gas pains) and not for everyone. 

Either way, it's good that you're considering it and I wish you a clean bill of health!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1460
 

Hi Kenf11...I have had to have a colonoscopy thru my ileostomy.  I still have my rectum, so he scoped there first. My doctor was kind enough to agree to medicate me for the procedure. Past scopes I have always found very painful.  At any rate, it went very well, and very quickly. when I think of the fourty years it took to get a proper diagnoses, I was slowly loosing my BRAVE! Like Eric, I always rather enjoyed seeing the pictures as they went along my guts, but after that previous scope, I would opt. for the drugs any day. All the best to you, and because of cancer, I would truly recommend that you see your doctor and request one. Cancer is nothing to mess around with. Neither is your life. Be safe, not sorry.  All the best to you.

Linda


   
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Barbara
(@msbjlee)
Joined: 6 years ago
Posts: 452
 

When I still had my colostomy (bowel removed and permanent ileostomy July30th) I had 2 colonoscopies through my stoma.  I still have my rectum and they started there then went to my stoma.  I am a chicken so opted for the drugs.  My doctor uses versaid (sp?) Which he refers to as the " I don't give a damn drug". So I didn't feel anything and according to rumor had a marvelous time!  The doc said they went fine. 

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1460
 

Kenf11...How is it going?  I was wondering if you have looked into having that scope yet?  It is not easy to confront the past this way, but Kenf11, if not, maybe it's time to do so?  If you have taken the steps to take care of this health issue,  let us know how it went for you if you want. It can be hard being in a new area and all, have you got a regular doctor, or are you having to go thru a clinic? You can be sure that knowing you dealt with cancer once, means that a new doctor will take your situation just as seriously.  Some of us are old hats at scopes without stomas, but we were all new at having that first scope with one.  If you need encouraging of any kind, just let us know. That is what this is all about. Hope to hear from you soon. Have a nice weekend.

Linda

Linda


   
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(@kenf11)
Joined: 6 years ago
Posts: 7
Topic starter  

Thankyou everyone for your responses. Still waiting to get hooked up with a doctor and oncologist here in Moncton. Wheels turn so slow. I am at my 3 yr mark after diag. for stage 3c bowel cancer. I do see a NP at a clinic here, however I think I may be his 1st patient that had bowel cancer. Again thanks for the encouragement.

 


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1460
 

Kenf11...being a first patient to a new NP with a cancer history, is not always a bad thing. They are often more eager to learn and will remember you well. Just be sure and check in with the NP in 2-3 week intervals. I was in a line up in Walmart at Christmas about three years ago. There were about seven people in line.  One had been waiting 7 years for knee surgery, and was now in a wheel chair, and the others were waiting more then three years for various other surgeries or tests. I could not help but over hear what they were saying. They were all just abiding their time to have there surgery or tests done, and none of them were looking forward to family time at Christmas due to the amount of pain they were in. Once we were out of the line up and walking towards the door, one of them had noticed that I too was limping. My limp was a swollen knee from Arthritis. My first round with it. Just before we got to the door, I asked each of them how long they had been waiting and when the last time was they saw the doctor who ordered their tests or surgery. I was a tad alarmed for the man who said it had been 7 years since he was to be put on the waiting list for his surgery and was now in a wheel chair. He said he was in considerable pain 24/7. He was taking over the counter NSAIDS (non steroidal anti-inflammatory drugs) in large amounts. This was likely causing his digestive upset something fierce. I explained that as long as they remained the quiet patient, just taking the wait time and the pain, and not going back to their doctors office to let him know they still existed, and to tell the GP how they were affected by their pain, that the doctors will think that they are managing just fine and that there is no need to put them up in the line to have things done. The proverbially squeaky wheel gets the grease...I told this man that by now the doctor did not even likely know he existed. His file is probably under three feet of other dormant patient files. All of them looked at me like they had just seen the stars for the first time. We had a discussion right then and there about how to get back to the doctors office and make the matter of pain and quality of life a big and important issue. I told them to go back every 2-3 weeks, and to go to emerge of they were terribly bad.  They may not have been life and death, but the severity of how their lives were affected by the pain was very obvious. All of them and even some hanging around and listening to the impromptu chat were going to make appointment's as soon as they could to get back to the original doctor.  The thing is, to see a specialist, after 6 months, unless you go back to the specialist before that time, you need another referral to the specialist who saw you and said you needed surgery or tests. This is not the end of it, often they want updated tests and x-rays, these all take time, and then another wait list for the specialist...you get the point right? Do not lay dormant and too patient, this is cancer. It waits for no one. Listen to your guts in a whole other way, and if you feel an urgency to have this scope done because it has been three years, you need to be on your doctors door step. Because they are new to you, they have no idea what you went thru and they may not even have your file and may wait for that to make the next move. I get copies of any serious results that have a positive read to them and as well as the doctors letter to the specialist and the specialists to my doctor.  You may have to pay something for it, but I have never gone wrong doing this. When we moved 5 hours away from my old doctors, they let me take copies of the file in hand to my new doctors. I made my own copies and have had to make copies of copies more then once because of files getting transferred to computers. This has proved vital on more then one occasion. You can get swept under the rug so quickly in a hospital or doctors office, that it is really up to you to keep track of what you have and what is being done about it and if they will not give you the papers you request, keep a really good journal about who has what about what. Addresses, names, dates, all of it. Also, in Canada, you have a right to all your medical files. There may be a fee for paper copies, but it is so worth it. You get these papers by writing to the doctors office or hospital you were in and request the files for a certain stay. You will need your doctors name, and the dates you were in hospital and ask for the test results, and surgical notes also. They will only send you what you ask for so you have to think of everything. Also, make sure you say that this is for you information only. Do not say this, but they may think there is a lawsuit at hand and will delay sending files and making copies. After you send the letters, wait about two weeks, then phone and ask if they got your letter and ask how long it may take to get the copies. I say this when I call...I need to make sure I put the right address on the return envelope I sent along....this requires them to dig up your letter. Now it is in their hands. Then, if they said three weeks, call back at three weeks and ask if they have gotten to your request yet. Be very polite and patient with them to some degree, but do not let your letter get buried under three feet anywhere. I believe this falls under the freedom of information act. You can read about this in the law books at your local library. Include your  contact information including your medical number. Not necessary but, I have often included a large envelope and  bunch of stamps on it addressed to yourself. The end weight will be the cost. I have never sued a doctor or mentioned the word in front of them.  I am so glad I have the information I have.   This is not the advice of Eric or his site, it is just mine.

Kenf11, I know this is long, but I want anyone reading this to realize, if you do not, that you are a valuable person in life and that you matter. Do not let your health get the better of you or a waiting list. Keep up to date on things, no one is going to do it for you. You are your responsibility. Live life well. If you have to go down, go down fighting. All the best.

Linda

Linda


   
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