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Update - Please Help Me

wesparris
Posts: 11
Joined: Apr 2007

First I want to thank all of you that responded to my message a week ago. Your kind words brought me and my family much comfort. Just a quick review of the history - last week I went in for a routine screening colonoscopy as I was having minor bowel changes, and wanted to be extra safe (the doc did not even really want to do it due to my age - he said it was probably irritable bowel). I am a 41 year old married father of 2 with one on the way.

Well...it turned out I had "at least 40 polyps", and the Doctor said I would need to get my entire colon out or would get colon cancer within 5 years. He took only one Polyp out which proved to be a benign Tubular Villious Adenoma.

I decided to get a second opinion as I was uncomfortable that the first doctor did not do a thorough job (as how can you generalize the pathology of all these polyps with only testing 1).

The second doctor agreed and today he did another Colonoscopy and Endoscopy. The good news is that there was nothing in my stomach or upper intestinal area. The bad news is that he said he saw more than 100 Polyps and the appear like "carpet" in the colon. He took 15 out for testing. He also said after the procedure he would recommend a full Colectomy "within a few months"...and would not advise waiting year.

My problem is that I have just started a new job. ANy ideas how long it takes to recover from this type of procedure (J-pouch is the one I think I will go with), and does it take two procedures (1 to do it and 1 to reconnnect), or can they do it all at once? I really cannot take more than 1 to 1 1/2 weeks off. Any chance of that? Also, every thing I read says that CRC is slow growing, so I wonder why I could not get colonoscopys every 3 months fort he next year and then have the procedure done in a year - once I am established at work?

Thanks again for all the help. Your additional thoughts would be greatly appreciated.

Wes

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Wes,

I am so sorry that you are having to deal with these struggles, especially at a difficult time like a job change.

You should have some job protection to get this procedure done. My surgery did not include any pouch and total healing was around 6 weeks. I would guess that I could have gone back to work (if I had to) within 2-3 weeks (also depending on the job) and there may be some time getting used to your new appliance. I am fairly certain that it will only require one procedure to remove and reconnect.

You need to get this procedure done ASAP or you are seriously running a huge risk and ensureing that you will need even more time off for multiple surgeries and chemo. At some point, you have to determine the value of your life. Work will always be available ... will you? Yes, most cancer of the colon is slow growing, but with that many polyps (tumors) time would not be a risk I would be taking. If none of them have turned cancerous, it is still taking a huge risk that one of them won't turn cancerous during the one year wait. Also, there are certain types of colon cancer that quickly grow. A follow-up colonoscopy is generally done only to ensure that the colon still remains clear of problems and the doctor can't always tell by sight whether something has turned cancerous. My gastro claims that he was surprised when my SINGLE, healthy looking, juvenile polyp came back cancerous. Suprise number two came after my surgery and they discovered that I was already stage III, meaning that it had spread locally and invaded at least one lymph node.

My prayers are with you during this difficult time with a difficult decision to make. It's great that the second doctor took more samples.

I'm sure speaking to a surgeon would give you a much better idea of how long a recovery you would need. Maybe meeting a surgeon would help.

Good luck,

Patricia

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi Wes -

So unfortunate that you are in this situation just as you are starting a new job. However, with 40 (or a 100) polyps, you really need to go for the surgery now. Trust me, as a Stage IV person, you really don't want to end up with metastatic disease and the first step toward avoiding that is getting rid of what's in your colon.

I "only" had a laparoscopic sigmoid colectomy, but it took me 4 weeks to go back to work (no ileostomy) - if it had mattered hugely I could have done it in three weeks, but 1.5 sounds really unlikely. My surgery was on Tuesday and I was home on Saturday, but it was laparoscopic and believe me, being home was great, but I was not fully functional (and was totally exhausted)..

I am wishing the best for you, but I really think the very first thing you need to do is get rid all those polyps - which probably means getting rid of the colon that has those polyps. Colon cancer - or potential colon cancer - is not something to mess around with. You in a way are fortunate that in spite of all these polyps you may have been diagnosed before anything becomes cancerous. And, the next step would be to get all this out before it can become a real problem.

Take care, I know this is all really difficult to take in,
Betsy

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Wes,

You and your family are definitely facing a lot of decisions. I was 33 when I was diagnosed and my kids were 2, 4, & 7. So I really understand where you're at with things.

Although CRC is slow moving, you must consider that if one doctor saw 40 polyps, and the second saw 100, is that a sign of growing or carelessness on the part of the first doc? Secondly, even though you are starting a new job, none of it will mean anything if you make your health take a back seat to a job. I realize having the time off can be taxing, but if you don't take care of yourself, you will have worse consequences than unemployment, right? Plus, what about family leave at your job? I realize it's time off without pay, but your job is in a holding pattern until you return.

So back to what you do know....
(1) You do have polyps.
(2) I would bet that due to the number of them that you have, some are probably on the brink of turning serious, if they hadn't already.
(3) Do you feel comfortable waiting an entire year before doing something? Take the scenario of getting scoped every 3 months. What if one of those scopes reveals that it's advanced from the prior scan, and you can't rewind?

Just points to ponder. Be strong, be optimistic, but most of all, work on being here for your family.

Keep us posted,
Stacy

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi again Wes,
I am sorry that you have to go through all of this, but there is not much doubt, in my mind, that you have FAP which is a genetically inherited condition in which many polyps develop in the colon, at a young age. I can attest that it only takes one polyp to develop colon cancer. I was diagnosed at 31 and I was Stage IV with only one polyp. God willing, you do not have any cancerous polyps among the many. However, you do not have much choice but to go ahead with your surgery ASAP. It takes 5-10 years for a polyp to become cancerous, but you have no idea how long those things have been there. Adenoma means that the polyp tested was a pre-cancerous polyp. So, If I were you I would just have a little sit down heart to heart with your supervisor. It is not as though you planned any of this. Perhaps you should wait until you know your surgery date, but I would say the minimum amount of time before you would be able to return to work would be 2 weeks, and that is if you have a desk/office type of job. I am a Forest Ranger in the back country and I was back working after 2 weeks, if memory serves me and I was out backpacking w/in a month and while on chemo. The main thing is not to lift heavy objects for 3 weeks, I believe, otherwise you can carry on OK, esp. if your job does not entail physical labour.
At any rate, I think you will be surprised how understanding people can be, you just have to give them the chance. You might consider a 3rd opinion even, my mother, as I stated before, saw Dr. George Chang at MD Anderson in Houston, Texas. He specializes in minimally invasive surgery. You can look him up on mdanderson.org She ended up not having surgery at all, but she does not have FAP (which I suspect you may very well have).
Anyway, I am sure you will be fine, just try to take it one day at a time. I know that is easier said than done.
Take care,
Susan H.

katiehughes8
Posts: 2
Joined: Apr 2007

Hi Wes
I had a ileoanaostomy J-Pouch(Not sure on the spelling)when I was 14 years old. My mom's side of the family is Ridden with FAP. Both my sister and I had the operation on the same day she was 18. The doctor said that if we didn't catch it early on that it would develop into cancer by the time we turned 30. I am 31 today and thankful that my parents made the smart decision. I know you are worried about your job but I would worry more about being there for your family in 5 years. Do what ever you have to do. Take a family leave do the surgery...you will probably be in the hospital for 7 days with no complications. I started walking around the day after my surgery...it's important to walk around i guess. I was able to walk around my neighborhood block after 10-12 days and was feeling as normal after a month. After 3 months I was able to run on the cross country team in highschool. If you have a desk job I would think you could be back to work and be productive after 3 weeks to a month. Where do you live. I know the best Doctor to go to. He actually pioneered the ileoanaostomy and gave me a great bikini line! I would love to be of any support if needed. I feel I have a lot to share in the department. Including what to eat and what not to eat after this operation. Again, health and your family is a great gift. Do what you have to do to take care of yourself.

Katie Hughes

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. I certainly understand how you feel about being in a new position and having to miss work. When my husband was dx in Dec,I had received a promotion just 2 days prior to his dx. It's a demanding job so I called my boss and said , if you need to recind the offer, I understand, as I'll be going to treatments with my husband, doctors, hospital for surgery, etc. because that's my priority. I was SURE they would recind it. There were two other qualified candidates for the position. I was surprised when my boss said, not a chance! We'll work through it and I know you'll give it your best when you are here, which I do. Your in a tough spot because it's a new job, but people often surprise you. Talk to your boss, explain the situation . You didn't plan on this. It's beyond your control. If they have any compassion at all, they'll understand and let you prove your worth before you have surgery and after your recoup. As Betsy said, colon cancer is nothing to mess around with. If you wait too long, it can have more disasterous effects on you and your family then losing your job. You'll be in my prayers. God Bless

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Wes,
I had a J-Pouch after removal of the rectum and sigmoid colon, total of 12 inches of colon removed. I never had an ostomy....my surgeon specialized in reattaching the bowel during the same proceedure.
I don't think I could have returned to work in a week. I would recommend talking to your new boss, like others have said. Explain that this would be alot better than having you out for cancer sometime in the future, if you must.....
Being without cancer is MUCH better than with....take care of it now....think of what it will mean to your family if they must deal with the beast, as well!!!!
PLEASE keep us posted,

Hugs, Kathi

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

You should not wait, find a good colorectal oncology surgeon. You are allowed 12 weeks off of work per year by law. It's called the family/leave act.

Good luck and keep us posted.

Maureen

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Hi all -

FMLA only covers employees after 12 months and only if they worked 1250 hours the previous year (not including paid time off). So, Wes doesn't have FMLA to rely on. However, may companies have sick leave policies that are very generous from the start and that may be a possibility.

Wes, this is a tough situation, but please talk to ta surgeon so you can start your climb back to normal.

Take care,
Betsy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Wes,

thank goodness your polyps are not cancerous yet. You'll be a semi-colon without the cancer!

Could someone please educate me on what a J-Pouch is?

Hope all goes well for you on what you decide.

peace, emily

katiehughes8
Posts: 2
Joined: Apr 2007

HI

The J-Pouch is when they turn the end of the small intestine into a reservoir and then it is attached to the anus.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Oops! You are right, katie...

Mine was a modified J-pouch...used large intestine for the reservoir....both replace the rectum, which is the storage for fecal matter.

Hugs Kathi

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