Rectum Cancer- recovery questions

sdiddy · New User Joined: 05 Aug 2007 Posts: 5

Hello all,

I was diagnosed with rectum cancer last January. The initial diagnosis was T3N1. Since then I went through 6 weeks of preoperative rad and chemo which reduced the tumor from about 1 1/2 inches to an ulcer on the rectum wall. I had no appreciable side effects.

After the rad/chemo treatments, I underwent two surgeries. The first one removed about 1 1/2 ft of my colon/rectum. The pathology report came back with me being clean and they reduced my diagnosis from T3N1 to T2N0. Nothing in 13 lymph nodes from the pathology report!!!! I am very grateful for that. I had to wear a bag, from my temporary illeostomy, for about 7 weeks. THe second surgery, last July, hooked my plumbing all back up.

So, now I'm in the recovery stage and wanted to get some advice on how to help myself heal. I'm frequently going to the bathroom with little coming out. On some occasions, I have a real bowel movement, which is cause for celebration!!!! I get sharp pains and some cramping with soft stool. Sometimes its burning down there like I had an extremely hot mexican dinner (the flaming a**hole syndrome). Lots of times, when I get home from work, I have to take a small shower to clean up and reduce the burning and pain.

Are others on the forum having similar problems? My doc says it takes time.

What kind of diet are others on?

Are these symptoms long term or do they really get better?

Thanks in advance for any advice

Sdiddy

cherylta · New User Joined: 06 Dec 2007 Posts: 4

I have the same issues. I am now 7 weeks post op from resection surgery do to rectal cancer. There has been some improvement (tummy is no longer terribly distended, rectal pressure is gone, and I don't have the urgency as bad as I did in the beginning) . However, I still spend way to much time in the bathroom, and half of the time I pass very little stool and the burning is pretty intense! I go back on chemo tomorrow and will remain on the treatment through March.
I'm so worried that the chemo will add to the problem.

I too am looking for answers. Will this go away or am I destined to be a lomotil junkie? What sort of diet/meds worked for any of you? Has anyone tried any natural remedies such as Aloe pills/juice?

Any input would be greatly appreciated.

brainman

Hi sdiddy and cherylta, I am very sorry for your cancers and now post surgery complications. I really do not know if what you are experiencing is "normal" because I have not had to go through what the two of you have faced. However, your problems do sound logical... things I would expect someone with your kind of surgery to be experiencing at this point.

I have used aloe juice in the past. In fact, I still have some. I used it not because I was having any major problems, it just sounded like a harmless enough juice to drink during a time of great anxiety in my life while waiting to hear from my neurosurgeon when my brain cancer recurred in 2005. Although I have no scientific proof to back this statement up, I do believe it helped protect the lining of my digestive track.

Good luck to the both of you. I hope someone with more experience in this area will reply with more information and support.
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JayDS

I too had rectal cancer but the tumor was only an inch from the anus so I had my entire rectum and anus removed, permanent colostomy installed.

Thus I don't get the 'urge' anymore, **it just happens on its own. Smile

That was in 2001. I do sometimes get 'backed up' and after a few days then I get severe cramping and loose stools until I am empty again.

However I have tried yogurt (Activia, I am in Canada so i don't know if that brand is available to US residents) and have found that even when the feces gets a little dry my bowels will still move it on out. Since starting having a small yogurt several times a week as desert after supper, I have not had the cramping and explosive evacuation of the bowel problem.

The only contra indication I can think of would be a lactose intolerance, otherwise it can't hurt to give it a try.

UKNeil · New User Joined: 16 Dec 2007 Posts: 3

Hi sdiddy

If a colon cancer diet to help prevent the condition is desired, most people are surprised at what they can eat. The reality is a diet that is overall quite tasty can help prevent this potentially life-threatening condition. Some of the foods to consider include:

* Whole grains. A high-fiber diet is almost always called for to help prevent colon cancer. This includes whole grain rice, breads and even pastas.

* Fruits and vegetables. A diet that is rich in fruits and vegetables is excellent for helping prevent colon cancer and a host of other conditions.

* Lean meats. In most cases, the best proteins to take in include fish, shellfish, lean pork, chicken and other poultry.

* Low-fat dairy. It's not wise to cut calcium-based foods out of a diet, but selecting those that offer low fat and low calories makes sense.

UKNeil
_________________
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showbiz111 · New User Joined: 03 Jan 2008 Posts: 3

Sorry to hear about your diagnoses and surgeries and pray for your speedy and full recoveries. I was diagnosed with Stage I rectal cancer in July this year and had surgery this past November- have a family history of gardner's syndrome and familial adamaetous polyposis. Have a very good doctor at Columbia Presbyterian Medical Center, who was able to save some rectum and anal muscles, and to create a Jpouch (small intestine anastemosis) with the remaining rectal tissue. I am still in rehab but hope to be released soon.
I also have duodenal hyperplasia due to the same polyposis condition, which hyperplasia, I am informed is pre cancerous. However, they want to do a radical Whipple procedure and removal of the entire duodenum and part of my pancreas.
Any information on this procedure and potential alternatives will be most appreciated.
I pray that you all be blessed by God and that we receive healing from Him and that we all have a happy, healthy and prosperous new year.
_________________
showbiz

DulcimerGal

Will all of you who posted on here and were in recovery from Rectal cancer - please give us an update and let us know how you are doing?

I was diagnosed back in February and am now on the pre-op chemo and radiation. It was wonderful to read about your experiences, but I would really like to know how things are going now. It is really getting me down already, just worrying, and I am already apprehensive about the quality of life after the surgery.

I will post a separate post on my status.
Thanks for being here everyone - and I want to encourage anyone else out there like me who has Rectal Cancer. It would be great to hear from you - so please post!

DulcimerGal

robertb · New User Joined: 19 Feb 2008 Posts: 6 Location: Canada

It has now been two years since my rectum was removed,and my bowels were put back together. I am still experiencing most of the things others have related. It is usually 4-5 days between bowel movements and then it goes on for hours. On those days it is impossible to go more than three feet from the bathroom. Without the rectum, there is nothing to stop the movement which occurs frequently. Short of eating the bark off the tree, I am getting more fibre without the effectiveness. I am happy to be alive but wish I had bought stock in the company that makes depends! Hang in there,
Bob

DulcimerGal

Thanks for posting your comments Robert. I too will be glad if I am alive after all this is over. It just sounds like things are not going to get much better really with the plumbing.

The radiation I am having is giving me terrible diarrahea and the burning is too much too bear, keeping me out of work, and on the pain pills, plus cramping to die for.

My tumor is 4 centimetres and of course, I am hoping the radiation will shrink it. I only got the chemo for 14 days due to various side effects and complications, so I am already worried about it having a higher chance of recurring.

If you look back - was dealing with the bags better than getting your plumbing hooked back up?

Thanks - and may you continue to improve
DulcimerGal

robertb · New User Joined: 19 Feb 2008 Posts: 6 Location: Canada

Dulcimer girl, I know what that burning feels like! My pain was more from the radiation that was concentrated on that area. I was happy to get rid of the bag! It kept coming off, especially at night. Nothing like waking up and having your body covered in excrement. Despite my resection problems I would opt to get rid of the bag. I hope they caught your tumor in time. The stats say 95 % success rate if it is caught early enough. Take care of yourself, Bob.

DulcimerGal

Thanks Bob,
Your comments certainly put that in perspective!

I have a really good surgeon, and I picked him because he is known for working miracles on difficult rectal cases. My tumor is close to the sphincter muscle, and he really needs 2 centimeters of a cancer free edge to do the resection, though he also says it can be done with only one centimeter. That's why I really want the thing shrunk!

If he doesn't get enough edge, then its a colostomy for me, and I won't know until I wake up from the surgery!

....I questioned him whether it was worth or the hassle to even try - but having read about your nighttime problems - I Am SURE I want to have the resection!

Do not know yet if it was caught in time, it was a pretty big tumor and ulcerated.....I do know it has gone through the rectal wall and into the surrounding tissue, but nowhere else thank God. ALso I have some swollen lymph nodes - but won't know if they are cancerous til they do the surgery.

Keep posting on your progress - I'll look to you to come up with a good diet for me to follow!
Cheers
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th
6 months Chemo to follow

robertb · New User Joined: 19 Feb 2008 Posts: 6 Location: Canada

I forgot something my oncologist told me to do about the rectal pain from the radiation. PREPERATION H! I thought he was nuts when he told me to apply it. It really works to soothe the pain. Towards the end of my radiation my anus area was like hamburger. Prep H really helped. Bob.

DulcimerGal

Bob!

Where have you been!
I will try the prep H.......it's definitely hamburger -
Good news though - tomorrow is my last day of radiation.

I am so happy.
How long does it take for the pain and burning etc to subside? a week? longer than that?

I am really worn out. Dog tired and sick of sitting in the bathroom.
Thanks for the "hot tip" ( tee heee....get it?)

DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th
6 months Chemo to follow

robertb · New User Joined: 19 Feb 2008 Posts: 6 Location: Canada

I think I tried to mentally forget a lot during that time! Using the prep h and time wise I would say about a week, which felt like a month. It did help.Glad to hear you're nearing the end for rad. My tumor was about the size of an egg and was reduced to the size of a pea after rad and chemo. Try your best to rest before your surgery. After surgery the quicker you can get up and moving will speed your recovery. My nurse made and helped me walk the length of the floor 8 times (6 hours after surgery). Hated and loved her. Sped up my recovery and had no problems. Keep in touch, Bob, and good luck.

REB · Last edited by REB on Mon Jun 23, 2008 2:28 pm; edited 1 time in total

I have lived with a colostomy for almost 7 months now. My reconnect surgery is next week and I can't wait to be rid of the bag.

I have never had a problem with the bag coming off at night, but I had issues with it starting to leak at work 3 times. Changing it in the work restroom was not fun.

I find it hard to do physical stuff outside. The hotter it is, the better chance of it leaking.

Most of the time, it is okay, but its those few times it is not, that you start to hate the thing.

Prayers that everything goes well with you.
_________________
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

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