2 Monrhs Since Colostomy and APR Surgery

br2738

Hello all,

It has been a little over two months since I had my colostomy and Abdominoperineal Resection (took out my anus and zipped me up) Surgery.  Recovery has had a few hiccups, but nothing major as it turns out.  Sitting is still pretty uncomfortable, but I am assured that  will get better each week and eventually won't be an issue.  I am just so thankfull to be rid of the debilitating pain that I was in from the tumor and radiation damage!  All that is gone now, and I am truely feeling like a blessed man.  I am getting ready to start chemo again for the metastasized tumors that made it to my lungs, and am trying my best to gain back weight and stregnth that has been lost before and in the beginning of recovery from surgery. 

One thing that I am dealing with is incredible abdominal pain in the digestion process.  It is much worse than it was the few weeks after surgery and came out of nowhere after everything seemed to be getting back to normal.  Has anyone had to deal with this 2 months after a colostomy?  It just through me for a loop because it occurred when I was at the hospital for a CAT scan and I was in so much pain that the staff insisted that I be admitted to the emergency room.  After xrays and Delaudid, I was told that it was just severe constipation.  That didn't make sense to me because I stay pretty well hydrated and have had no change in diet.  I was just wondering if anyone else had such a curve ball at this stage in recovery from a colostomy.  My colostomy is a descending colostomy. 

Any input would be appreciated.  For anyone that is searching for info on the proceedures I have had or my fight, feel free to contact me.  I went into this blind 2 months ago and have received massive support and advice from this site, other sites, family, freinds and professionals in the feild which I am more than happy to sharre with anyone that needs some of the same.

eihtak

br2738

Hi and welcome, as much as I don't like to have to say that. I am glad we are here for each other. I am a couple months shy of 3 and 1/2 years post treatment for anal cancer. (One year post I was also dx with breast cancer, double mastectomy and ongoing meds). My anal cancer treatment included what was originally planned to be a temporary "loop colostomy" chemo/rad. The radiation damage to the sphincter area was worse than what is common and my doctor, (along with 2 other specialists) agree that reversal would leave me incontinent of stool. So, it is now a permy! I will always have that lingering question as to whether I should have taken a chance or even still should on reversal but for the most part have now moved on from there.

In answer to your question about abdominal pain, yes I did occasionally get that and like you....out of the blue.  You say were at the hospital for a CT scan, did you have to drink prep? That ALWAYS causes me a little discomfort followed by a "woosh" of liquidy output. I usually plan to hang around the clinic till it happens as I have a long ride home. I also eat a good deal of fruit, COOKED vege, (stay away from raw) and thats mostly ok but if I get too much fiber from breads and grains I get severe pain so really have to limit that. I stick to small amounts at a time, stretching or going for brief walks throughout the day, and lots of fluid all help. Make a mental note of what you've eaten and when the pain starts and see if anything relates. Constipation with an ostomy happens but can be very painful. Dried apricots keep things running smoothly for most ostomates so I eat just a few in the am and again at night and have had little problems since.

Your body has been through A LOT and sounds as it is continuing for a while so may be a bit slower in healing from surgery of this kind. Are you on pain meds? They can be horribly constipating for some. I needed pain medication for a few months during/after surgery but always took a stool softener to help reverse those effects.

I don't know if this has been of any help, but please feel free to ask any questions and if I can I'll answer or someone else will chime in I'm sure.

I will keep you in my thoughts and prayers as you continue on this journey.

katheryn

nicotianna

lung chemo

Hi - I am sorry about the pain you are experiencing.  Unfortunately, I have no experience with this since I did not have a colostomy.

I share another issue you have & that I also have a metastasis to the lung & at least 2 nodes in the lung.  I am wondering what chemo drugs you will be receiving & how soon after your surgery?

Did you have a biopsy of the lung lesion/s?

Thank you!  I hope you feel better soon.

Nic

Iat10m

APR recovery

I am scheduled for APR in a couple of weeks And wondering how long I would be away from work?

I have a desk job with lists of sitting.

Just wondering how your recovery has progressed since the last post?

Any info would be greatly appreciated 

Phoebesnow

Iat10m said:

APR recovery

I am scheduled for APR in a couple of weeks And wondering how long I would be away from work?

I have a desk job with lists of sitting.

Just wondering how your recovery has progressed since the last post?

Any info would be greatly appreciated 

APR Surgergy

Hi,

 

Ithink you could find more information on APR on the colon board.  Most people here have been treated with Chemo and radiation only.  

eihtak

Iat10m said:

APR recovery

I am scheduled for APR in a couple of weeks And wondering how long I would be away from work?

I have a desk job with lists of sitting.

Just wondering how your recovery has progressed since the last post?

Any info would be greatly appreciated 

lat10m.....

Hi there, while I did have an ostomy as part of my treatment for anal cancer, I have what is called a "loop ostomy" and my rectum and anus was left intact (yet out of use). This is most often done when there is the possibility of reversal in the future. That is no longer an option for me due to radiation damage to the sphincter, but who knows what options I may have down the road. 

Anyway, I can not offer advice on the APR and healing time frame but maybe (Laz) who has been through this will chime in.  There is an online site called   C3Life  that is for people with all sorts of ostomies and many who have undergone APR surgery. They are sometimes a bit slower in responses but there are a few regular posters that will get back to you quickly. I'd check it out and at least read some of the threads to get some helpful information.

I can tell you that apart from the healing there is an adjustment period to the whole world of living with an ostomy......but it is not nearly as bad as some would imagine. After learning what foods cause issues and what products work best for you there are many advantages. I do not have the pain that so many people here experience daily with bowel movements. I am physically active and do most of the things I did prior to having an ostomy. I do recommend (if you haven't already) seeking out a stoma or wound care nurse. They are trained on ostomy care and can offer you tons of information about various products available for each individual situation. I was also lucky to find a local ostomy support group that has been both fun and helpful for me.

Best of luck to you as you move forward......

katheryn

 

pializ

eihtak said:

lat10m.....

Hi there, while I did have an ostomy as part of my treatment for anal cancer, I have what is called a "loop ostomy" and my rectum and anus was left intact (yet out of use). This is most often done when there is the possibility of reversal in the future. That is no longer an option for me due to radiation damage to the sphincter, but who knows what options I may have down the road. 

Anyway, I can not offer advice on the APR and healing time frame but maybe (Laz) who has been through this will chime in.  There is an online site called   C3Life  that is for people with all sorts of ostomies and many who have undergone APR surgery. They are sometimes a bit slower in responses but there are a few regular posters that will get back to you quickly. I'd check it out and at least read some of the threads to get some helpful information.

I can tell you that apart from the healing there is an adjustment period to the whole world of living with an ostomy......but it is not nearly as bad as some would imagine. After learning what foods cause issues and what products work best for you there are many advantages. I do not have the pain that so many people here experience daily with bowel movements. I am physically active and do most of the things I did prior to having an ostomy. I do recommend (if you haven't already) seeking out a stoma or wound care nurse. They are trained on ostomy care and can offer you tons of information about various products available for each individual situation. I was also lucky to find a local ostomy support group that has been both fun and helpful for me.

Best of luck to you as you move forward......

katheryn

 

LAT

i am sorry that you have a need for an APR. I was informed in April that it was a probable for me. i too was concerned about recovery But fortunately I discovered that it wasn't necessary at that time. 

For some anal cancers it is the best treatment at the off (adenocarcinoma), but that is I think, one of the rarest of ac's. I know of a UK patient who has elected for an APR & is having it next week, but I don't know of any others. 

Although you might not get the answer you currently need here, & you might get that off the colorectal board, if it relates to anal cancer, your posts are more than welcome, & if we can be of help in any way, please don't hesitate to ask. 

Best wishes for an uneventful recovery

Liz

lp1964

Dear Friend,

I had the same treatment and surgery like you for rectal cancer. We are all different and every case is different. But it sounds like you at least had complication or partial blockage. I suggest you take stool softeners and if you did not have normal output for more than 3-4 days some milk of magnesia to get things going. Be carful though because if it gives you diarrhea you have to be home and your new pouch on. I my experience is that if I take 1 and1/2 of the supplied cap, nothing happens for 3-4 hours then I have diarrhea for an hour then I'm empty. 

Actually I do this at least once a week and for 3-4 days I only wear a stoma cap. I had to do this because of my work I cannot go to the bathroom anytime I want. I love it this way Since more than half the time I don't need to wear a pouch.

If these constipations/blockage are frequent you should consider a colonoscopy, because (i dont want to scare you) a friend had other cancers farther up.

good luck with your treatment and let me know if you have more questions.

Laz