Update

DulcimerGal · Posted: Mon Aug 04, 2008 6:46 am Post subject: Update

Hi everyone,

It's been a few weeks since I posted, and I've had a tough time. Remember I last posted about my bloated and swelled feelings in my pelvic areas...I was having a really hard time with it. Well - it got worse and developed into real pain deep in my pelvis. I started running a low grade fever - 99-100 and so of course called my Doctor's office (the surgeon group that excised the tumor June 1 Cool

. Lucky me - my Doctor who is a peach was on vacation - so I got this advice -

Probably scar tissue building up and the nerves re-healing - take your pain meds, rest, drink hot tea and lay on your right side...this went on for seven days, I kept calling in each day to say the pain was the same and so was the fever - but they said don't worry unless it goes over 101 - then go to the Emergency room if it does. So I was in agony for a total of 9 days, over the last weekend I called in again and was prescribed valium I was so upset about the pain.

On the Monday my surgeon returned I was the first one in his office, and bless him - he sent me right over to the hospital for a CAT scan. They found a pelvic abscess the size of an orange and put me right in the hospital where I stayed for the next seven days. They had to put a drain in ( a barbaric procedure) and get me on heavy antibiotics.

Of course this has set me back probably 3 weeks from getting my ileostomy reversal, which I was so waiting for. I lost a ton more weight and was anemic, so now my surgeon is seeing me this Wednesday to evaluate my condition before agreeing to the reversal. I've been home for a week now, and I am just as weak as a kitten.

Just wanted to say thanks for the posts from Bob in CA - those are a helpful balance as to what to expect with the reversal. I know most of my rectum is gone, I need to ask what percent. I am living for the day I get this bag off - I guess in some way I just want to look normal, and then somehow my mind says I will BE normal....

I printed out your helpful hints Bob..

Mike - good luck with the chemo and rad - good to hear your coming along well.
Denise - weren't you having your reversal July 28th? How are you?
Anyone heard from Dorothy on how John is doing?

I will have to catch up on my reading of the posts - at least I have the strength to type now!!

Cheers everyone
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

denise1966 · Regular Joined: 18 Mar 2008 Posts: 15 Location: Michigan

Hi DulcimerGal,

I've been watching for a post from you for the past couple weeks. I'm glad to finally hear from you. Hopefully now that your surgeon is back you wil be back on track. I can't believe they made you wait a week in such pain.

I went for my scope on the 28th, I had a little scare, they had to take a biopsy and I wait 2 days for the results, but it came back as scar tissue....whew!!!! I am going this Wednesday the 6th for my reversal. I was really looking forward to it, but the closer it gets, I am getting more nervous. I just hope everything works with no kinks or blockages.

Hopefully I will be home by the weekend. I'll let you know how it goes.

Mike - Did you start FOLFOX? I hope it is going well for you.

Have a great day,

Denise

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

DulcimerGal

Sorry to here you had to go threw all that pain. We really have to be the one's to make sure we get what we need, when we need it. I hope you do well from here, good luck to you.

Bobs tips are great, luckly I didn't have that much trouble. It was no walk in the park but not to bad. I have about 3 or 3 1/2 in" of the rectum left I was told. I started the fiber lax 3 days after I got home. I could see right away it was going to be needed for me. Corse I asked first. That really help to keep things soft, bulk and moving. It might get worse now with the treatment's ?

denise

They started me on oxaliplatin drip and xeloda pills. After rad is done (5.5 weeks) then folfox. 3 days on 11 off I think he said.

thanks and best wishes to everyone,
Gary

DulcimerGal · Posted: Mon Aug 04, 2008 8:52 pm Post subject: Re: Update

So great to hear from you both - Denise - I hope it all goes well for you Wednesday, my Doc said only 2 -3 days in the
hospital for reversal, so if all goes well I will look for your post this weekend! Good luck and stay strong! Since I am visiting my Doc that day I will think of you and send good vibes your way.

Mike, I am definately going to ask how much rectum I have left - I am just so mad at myself for not asking - how long is the thing anyway????
I think they took 10 inches of it.....but I'm not sure where I say that - maye the path report.....

What is fiber lax? Is it like the stuff Bob talked about?

AND - here is the question no-one is asking - that I am really concerned about - can you get to a bathroom quickly enough as you relearn to go?
Has anyone had to wear pads or diaper type things under their clothes in case of accidents? Like REB - I am done with leaking bags so I am also nervous that I will just be trading one headache for another......

Good luck with the chemo rad combo - that really took my energy by the time I got to week 3 or 4...

Cheers everyone
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

DulcimerGal

Retum is the last 6 or 8 inchs of your colon. So in my case and sounds like your is the same, they take out part of you colon also. Its all the same for the most part, just location names of the colon.

Fiber laxtive, like metamucil. Your doctor will or should give you some tips and if he don't, ask him.

I had time to get to the bath room, but stayed close to one at first. Stay home maybe till you know what to expect. Don't worrie about it, it's not all that bad or different, just more often, lots more often. But it gets better and slows down. I'm sure everyone is a little different.

DulcimerGal · Posted: Tue Aug 05, 2008 6:47 pm Post subject: Re: Update

Thanks for the reply Mike,

I don't mind havng to go pretty frequently, seems like I do that now as I like to keep the ostomy bag empty and I drink a lot, so I am always in the loo......I was worried about having to wear pads or something though, great to hear that you did not have to.

My Doc is doing a procedure called the "J pouch" - is that what everyone gets? Have you heard it called that? He is a colorectal specialist and reconstructing bowels is all he does so I am very hopeful.......

I will grill him tomorrow, although I know the last time we talked he says everyone is different and so are circumstances, age etc.

You are probably lucky that you did not have chemo/rad first, he told me that that combo can impact healing of the tissues too, and I had six weeks of it. You may have done so well because your tissues haven't been zapped yet!!!

Cheers
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

mike3 · Regular Joined: 03 Jun 2008 Posts: 25

DulcimerGal

Sounds like your in good hands. Far as the J pouch , google it. I don 't really know.

You could be right about me healing well, but there can be a bigger plus to having treatment before surgery. Ive read recurrent rate is less with treatment first. Every little bit helps...

Good luck
Mike[/list]

Rotorhead · Regular Joined: 04 Jun 2008 Posts: 34 Location: Hawaii

Good to hear you are all doing well. DG, your setback is unfortunate but it sounds like you are now looking towards a healthier future. I'm glad you are all able to get the reversal. My colostomy is permanent and I've already moved on, it's just a normal small part of life and not the center of my existence.

I just marked 6 months from my surgery and have started strength training again. I had a lung infection/damage from oxaliplpatin that held me back for a few weeks. Had to get a bronchoscopy - like a colonoscopy, except through the nose and into the lungs. I've hit the trifecta (endoscopy, colonoscopy, bronchoscopy). My brother tells me there is a procedure to zap kidney stones where they take a scope through your weenie...I think I'll skip that one.

Three more treatments of 5FU/Leucoverin and I'm done!
Aloha, RH
_________________
Diagnosed Stage 3 rectal cancer Nov 07
6 weeks chemo/rad Dec 07/Jan 08
Surgery (TME) 11 Feb 08
6 months FOLFOX started March 08
My blog: http://rotorheadsblog.blogspot.com/

denise1966 · Regular Joined: 18 Mar 2008 Posts: 15 Location: Michigan

Hi DulcimerGal and all,

Well, I'm home after my reversal surgery. The surgery wasn't too bad. The past two days have been pretty rough running back and forth to the bathroom. I'm hoping I can find some sort of pattern sooner or later, but right now, I'm at the mercy of my butt Laughing

How did your appt go with your doc DulcimerGal? I hope it was good news.

I hope everyone has a great day!

Denise

REB · Posted: Mon Aug 11, 2008 7:59 am Post subject: Re: Update

Hi DulcimerGal,

I am glad they found that problem. When you were talking about stomach being swollen, I didn’t realize it was that bad.

To answer you question, I had talked to a guy that got a reversal two weeks before me, and he had to wear a diaper. So I was expecting to have to. However I did not end up needing one. I had great control from day one, although I did have to run to the bathroom a lot.

Since you have had a lot of you muscle removed, you may have issues until you build it’s strength back. On the other hand, you have not had yours as long as I had mine, so that should help.

Just take it one day at a time.

Praying you make a full recovery soon.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

denise1966 · Regular Joined: 18 Mar 2008 Posts: 15 Location: Michigan

Reb,

I had my reversal last Wed. The last two days I have been to the bathroom many, many times. How long before it slowed down for you? Did you take something for it? It sounds like you had a pretty easy time with it. Any info would help.

Thanks in advance.

Denise

REB · Posted: Mon Aug 11, 2008 11:17 am Post subject: Re: Update

Denise, It took a couple of weeks for it to slow down. I was running to the bathroom every couple of hours. Here I am three months later and I have to go 2 or 3 times a day. I have been like this for maybe the last two months.

I went back to work 9 days after my surgery and it was an annoyance at first but it settled down.

It will gradually get better.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor and Temporary Colostomy
Started Chemotherapy 11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil) and leucovorin, oxaliplatin. Also Avastin
Last Chemo treatment 04-09-08, Colostomy Reversal 04-28-08 Age:41

DulcimerGal · Posted: Mon Aug 11, 2008 8:33 pm Post subject: Re: Update

Thanks so much for all the comments and updates gang!

Denise - so glad your reversal is done! Congrats and hang in there!

REB - thanks for your comments - and you too Mike3.
Rotorhead - you are almost finished!! Way to go!!

The Doc saw me last week and has scheduled my reversal for Wednesday August 20th at 7:30. He wants me to keep gaining strength til then and was all booked up for this week which is when I wanted to do it.

It will be touch and go - I figure 3 days in the hospital (How long were you in Denise??) should put me out at the weekend of 24th.....You guys may remember I am signed up to do the Rock and Roll Half Marathon in VIrgnia Beach the following weekend. 20 people from work have signed up to push me a in wheelchair and they are counting on me getting there so I HAVE to get some control in only one week!!!!

I talked to the DOc about it - he is great - such a believer in goal setting and he knows this is will be my eighth time doing this road race so he said to go for it. He said I can always take a pain pill, and I am thinking I will just eat very little the day before if I have to........and do the diaper as a last resort.....

I guess if it goes off I will have a heck of a story to post about after Labor day weekend!!

Denise - many many times a day - I guess that means you are staying home and close to the loo.....how many days now since the surgery?
I lost my whole sigmoid colon, so zero of the rectum is left, how about you?

Funny thing is - this week is the first week things have really gone well with the ileostomy bag....rash has cleared up - no leakages unexpectedly....go figure!!!!

Cheers everyone
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

denise1966 · Regular Joined: 18 Mar 2008 Posts: 15 Location: Michigan

Hi all,

Thanks for the response Reb. I hope I can have a little more control within a couple weeks too!

DulcimerGal, great news! I bet you're excited to get your reversal. I went in on Wed. and out on Friday (all they want to see is bowel movement and you're free to go).

These past few days, I have spent at home and really have no plans to leave for the next few to come. I feel better knowing the loo is close by. Just like you, about a week before my reversal, I figured out how to put and keep the bag on with no leaks or problems. Oh well....I really don't miss it much!

Have a great day!

Denise Very Happy

Darwin · Posted: Sat Aug 16, 2008 10:55 am Post subject: Re: Update

Hi DulcimerGal
Just posted an update on how John is travelling. Sorry to hear you have had this setback but I'm glad you are getting good treatment now.
Sorry I haven't been in touch but up until two weeks ago John was in quite a lot of pain so wasn't on the computer much. I am learning how to be a little more pushy with doctors and try to be more informed to ask the right questions. some drs seem not to like this but hey too bad for them. I questioned some of the outrageous charges they were charging John and asked for alternatives to get the same treatments and one specialists said "oh you sound like his accountant". I replied "No I'm just learning to be his advocate and learning that in this health system everyone needs an advocate as the patient has more than enough to deal with without having to think about outrageous medical bills". I would never have said that even a year ago so I guess it really is a learning curve:)) The Dr was speechless I might add:)
_________________
Ex husband's diagnosis was January 2006, stage IV bowel cancer with mets to liver and lungs. Two years of continuous chemo, folfox then folfirri. On MAX chemo now. Has had radiation to pelvic area and radioactive SIRT spheres injected through the portal vein into the liver.

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