Terrified of Upcoming Surgery - Need Sympathy and Comfort

Hi.. My name is Sandy.. I'm 58, was diagnosed with rectal cancer on Feb 4..... I did the chemo, that was the easy part.... Then the radiation... Whew... Nobody told me about all the PAIN.... And so now, I'm looking at surgery on Friday, July 17, to reconstruct and to add a colostomy bag... Which will be with me the rest of my life.... And I don't mind saying, I'M SCARED.... I worry about what to eat, how to dress, will it smell? Will it stay attached? Soooooo many questions.... Until now, I have been a very active grandma... But lately, I just want to curl up in bed and never get up.... Or just run far far away..... I really don't want Friday to EVER get here!! I guess I'm not really looking for answers here... Just a little sympathy and comfort.............

Hi, Redtop: You can lead a fairly normal life with an 'appliance', and you will feel a whole lot better as soon as the disease is gone from your body. When I was sick, all I wanted to do was die, and I came very close to doing so. But six years have gone by since my emergency surgery, and I haven't had a thought like that since. Try to look forward to being healthy and strong again; you will. Just take each day, one at a time. Hang in there, ok.

Hi Sandy. You came to the right place to post, chat, ask questions or just vent. I felt the same way as you did prior to and immediately following surgery. I wanted to stay in bed all day. We have all been there some way or another and truly understand the feelings you are experiencing. My name is LadyHope and also walked a similar path three years ago. To answer a few of your questions that you posted. 1 - After you heal from the surgery, you will most likely be able to do most of the same things that you did prior to surgery. I would recommend following doctors' orders and being careful in the beginning because developing a hernia is not uncommon. Many people on this site post about their hernias and having them repaired. 2 - Most people eat what they enjoy and usually return to the diet that they had prior to surgery and illness. In the beginning though, take it easy and experiment. For example, I would not eat a large pepperoni pizza, chicken wings, and wash it down with a large coke or beer several weeks post-op. I would try simple foods that are easy to digest such as baked or broiled chicken, mashed potatoes, mashed yams, canned veggies (I would avoid corn in the beginning), canned fruits, smoothies, ice cream, pasta, breads without seeds. From there, I would introduce additional foods slowly and always remember to chew your food thoroughly and drink lots of liquids such as water, sports drinks, flavored water, juice. 3 - Clothing could be a challenge at times but I wear most of my clothes from the pre-surgery days. It did take time because of my incisions healing and my puffy stomach. Fitted clothing was not comfortable early on. 4 - If you have odor, and remember, we do have odor when we have a BM, ostomates are able to place a specialty deodorant in their pouch to lessen the smell. There are many brands on the market. Give them all a try and see which one works the best for you. I like Na'scent, Safe and Simple, and M9 the best. They work for me but they may not work for you. Sandy, this surgery does take some time to adjust but every day, little by little, all this information will begin to make sense. My thoughts and prayers will be with you on the 17th. Keep posting anything and everything. Everyone here has wonderful information to share. Final note, recently I published a short book about my journey to gaining an ostomy. It is titled Stanley and Me Make Three and can be found on Amazon, Barnes and Noble, and the Tate Publishing site. Take care. LH

You have every right to feel scared, but it really can be such a gift and you will make it through. I am 2 years out and fully back to normal as far as the ileostomy and foods are concerned. You will have your ups and downs.

I put reminders around and pictures of the grandkids to keep my mind on why this is important for them!!! (You are very vital to your family)

I found recovery easier when I set goals and prepared ahead with lots of things I could do in baggies and baskets, plus a stash of good reading.

You will be so happy in a few months' time as this will be all past and the new you will reign!

Redtop:

My story is similar in so many ways even though my surgery was due to Crohn's vs cancer. I had a proctocolectomy in 2009 (permanent, complete resection of lower colon and rectum) and I was scared, depressed, had to experiment with various appliances and clothes until I got into a routine. Life since my surgery has been unlike any of my previous adult life. I am now able to be more active, energized, and actually more confident in public etc. I am not saying there aren't rough times and there are frustrations, oops moments and even occasional depression. BUT the difference is learning how to adjust, how to react to situations you're in, an understanding family who don't laugh at an occasional, uncontrollable noise. Celebrate that you are alive!

A lot of my help came from sites such as this and searching, reading and getting samples of things to try.

Specific questions you mentioned:

1. Odor: rarely. Sometimes I can relate to something I eat, sometimes not. If the wafer is securely attached to me and the pouch attached properly to the wafer, I have no problem. Typically the only time there is an odor is I have been outside mowing and body sweat is degrading the adhesive etc. I have to get in the shower, clean up and change and go about my business.

2. What to eat. Slowly experiment. My first "outing" after my surgery (about 3 weeks after) I went to a movie with my son-in-law, ate a bucket of popcorn (bad) stopped and got a chili-dog (bad) and went to eat Mexican food the next day (bad). Had some problems and not related to the ostomy, that would make anybody sick!! Be reasonable. Eat small before traveling.

3. What to wear. Lounging around the house with no company I wear something with elastic in the top. Anytime I am going to be working outside or going anywhere, I wear a product I get from Comfizz. (http://www.comfizz.com/) I slip it on and it keeps the appliance flat to my body and smooth to wear slacks, jeans, shorts, whatever. I had to adjust my waist size and get some new clothes that were a bit larger waist but I wear clothes that everyone else wears! Comfizz has been a lifesaver though! I learned about them on this website and order regularly to keep stocked.....

4. Will it stay attached? Absolutely. Will it stay for a week? NO. You will need to change and you will learn the schedule that is not traumatic for your skin but keeps you comfortable and safe from coming off. I use a 2-part system so most of the time I am at 3-4 days to change the wafer but change the pouch at least 1-2x daily. Usually if I have something detach it is due to either not paying attention to how long I have worn it and how the adhesive has degraded or being in a hurry and not putting something on the right way. Just last week I had company, and we had been outside and got very hot and sweaty and when we came inside, I took a shower and changed everything. In a bit I had to go to the restroom and everything FELL OFF because I had been in a hurry and didn't attach it correctly.

Basically, you have to learn to go with the flow. It is hard at moments and there will be bad days. But I assure you there are many more good days than bad and there are many more good days than there used to be before surgery.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Red Top,
This is Rosiesmom. Rosie is the name I gave my stoma, some of us give them names as they will be a part of us for life. Some of them are naughty lol. I too had rectal cancer. Did the chemo radiation surgery followed by more chemo. This was March of 2014. Attitude is as much a part of the healing process. Please try to only look forward. Wishing for what you had just drains your emotional energy. By all means take the time to mourn your loss, then put it away and look forward. You have been given a second chance, grab it with both hands. You have been given some really good practical advice in the other posts and we will all be here when needed. You should know Rosie and I just came back from a month in Europe with the fam. So you see life can be normal, just a slightly different normal. You will find out what appliances etc. work best for you. I like my 2-piece Coloplast system. I also change wafers 2-3 times a week and pouches at least once or twice a day. If home, I wash the pouch with antibacterial soap and hang to dry. If I am out, I replace and throw away using doggy poop bags, always carry spares and baby wipes for cleaning. I have NEVER had a problem with odor other than the normal when changing. Hey, whose poop doesn't smell lol. Take good care of yourself. That which doesn't break us makes us stronger. We have all been there and will be here for you. God bless and keep posting.

Your fellow ostomate

Rosiesmom

Thank you, Rosiesmom, for responding and making me smile. Yes, I will have to name 'it'. I have been trying to keep my spirits up, cracking jokes and things like that, but it hasn't happened yet, the surgery that is. I know life as I now know it will drastically change, so many things to learn. Right now, I think I am more scared of the cancer than the bag. I just don't know what the doctors will find when they cut me open, but I'm praying it won't be more cancer! But getting used to a bag... hmmmm... still terrified! I am glad I found this site and thankful for the reassurance. I am seeing that many folks have lived a very long time with a bag and are able to still be active. Thank God! I don't want to stay in bed, but I also don't want to stay in the bathroom. Yes, I'll get it figured out. You do what you gotta do, right? Again, thank you, Rosiesmom! I will be on here a lot more once I return home from the hospital, and I'm sure I'll have soooo many more questions!

Hello Mark... Thank you for your words... You know, funny thing is I wasn't really sick... That is until I found out I had cancer... That really threw me for a loop! And now, I'll have a new 'part' I will have to get to know... I'm trying to stay positive, but for now, it's hard. I'm still trying to educate myself on how my life is going to be... I guess I just need to wait and see... Yes, you are right, one day at a time! Again, thanks!

To Ladyhope and everyone else who has posted on here for me...thank you all!! It's overwhelming all the support I am feeling here...but it's also making me tear up....right now, it still feels like a dream, like maybe it's all never going to happen....but I know it is, and reading about it is bringing it closer to home...I haven't cried not once since I found out I had cancer, but facing such a major surgery and being left with a colostomy bag...well, this is something else...I can feel the tears coming.....thank each of you for caring!!

Hi, I don't want to make you cry, but I must pass this along. I don't know how your surgeon is going to approach your surgery. Mine was done orthoscopically robotically, five little keyholes. Even my oncologist was blown away; he was looking for a big scar. However, because my tumor was so low and in order to get it all, I lost sphincter muscle, etc., which meant they stitched my rectum closed. The stitches healing was a bugger, but compared to what I have read from others about leaking, it really was no biggie. I got a great gel cushion from Costco. I still use it on long car trips, etc. The orthoscopically surgery makes recovery very easy. I was walking about the next day. Hope this is of use.
Rosiesmom

M

Well, I think they will go through my belly...28 years ago, I was 6 months pregnant with my youngest daughter, and I had a cyst rupture. I had to have emergency surgery, cut from belly button down...well, still having 3 more months to carry my baby, it left a HUGE scar. Oh, by the way, my daughter was born healthy, 8 lbs 14 oz. My surgeon said there would be lots of scar tissue to cut through, and maybe more cause for infections. I was just going to throw this out to him, that as long as they are going to cut and remove scar tissue, can they just go ahead and cut a few more inches...you know, a tummy tuck...lol...I feel it's the least they could do, right? Now, as for stitching my rectum, I do think they did mention that...don't remember for sure...they were just saying so many things and I was just sort of numb...guess I'll find out Friday.....

Hi Sandy,

Welcome to the forum. I see you have already received lots of great information, so there isn't much more to say except maybe you could take a bit of time and visit the United Ostomy Assoc. where they have a list of the major suppliers of our needed products. Time will come when you might want to try a different appliance or a particular product that you might want to try. Most of the suppliers will send free samples to try. Here is a link: http://www.ostomy.org/Ostomy_Supply.html

We will be thinking of you and keeping you in prayer.

Sandy, being scared is normal. I still get scared when I get a blockage, evidently almonds and coconut stop me up. Avoid things that block your intestine. Chew, chew, chew your food and drink lots with meals. I am a 53-year-old mother of 5, grandmother of 4. We raise cows, horses, pigs, goats, chickens, stock dogs. We are pretty busy, but... you have to give your body time to heal before you jump back into the active lifestyle you had before. I had my surgery 5 years ago, could not afford bags. My mother sent me 10 every couple of months so I basically wore them until they fell off. I couldn't shower because the bags didn't last as long when you get them wet. I smelled horrible, though my family always told me I didn't. I just got Medi-Cal so now I get supplies sent to my home every month. I can change the bag every day now and best of all I can shower. I have to give a shout out to President Obama for making it possible for me to get Medi-Cal, and to Sarah at Shield Health Care. She made the call to the doctor and even sent me an emergency kit free of charge when my last duct-taped bag was falling off, before we could get a prescription for the supplies. I highly recommend Shield Health Care, I never had any aftercare, no ostomy nurse to explain anything to me. I had no idea there were so many ostomy products that make life so much easier. I had no money so I never looked. My mom would send something but it had no instructions and I would set it aside. Sarah knew someone at their company who had an ostomy and was able to package up all the things I would need for the month, plus instructions. I found that the one-piece bags are more comfortable now and when you change often you don't smell. Karaya paste and barrier strips keep the bag attached. There is a lot of information out there, search it out. This forum has helped me immensely. I sat and read for the first 2 years. Good books help. Good luck to you, find peace with your new life. It gets better.

Wow girl, God bless you Sorchia! I totally admire your strength and will! I just love this site, reading what everyone has been through, and is going through. It does help put me at ease...a little anyway. Yes, I know I will get through this...I do have faith! So for now, I'm going to sit here and keep reading and watching videos...I want to learn as much as I can so hopefully I won't be too shocked by things that will happen. I don't have insurance, but I did get my radiation at one hospital, 1 hour away, free care through the hospital....and my chemo was taken care of through a hospital that was 2 hours away...no one really explained what all to expect, I did try looking things up, but still was surprised when the skin peeled off the bottom of my feet! So, I'd like to do more research, read more posts...and take a deep breath...surgery is in the morning! Thank you for responding to me.....hopefully I'll be back on here in a few weeks...

Thank you so much, Mrs. A.... Yes, I have received some great info and advice on different things, thanks to all the wonderful people on here!! I have seen a few videos of people changing their bags, glad I did, I wasn't expecting a hole quite so big! And they explained that there are many different products, and said which worked better for them, and why. After I get the hang of things, I will start looking at all products I can find to see what will work best for me. Thank you for the link! And thank you for the prayers! :)  

Hi Red Top, just to let you know, I will be thinking about and praying for you tomorrow. By the way, your stoma will get smaller after not very long, really. Keep the faith, just think next week at this time, you will be almost a week into recovery.

Your fellow ostomate, Rosiesmom 

Hi Sandy, I hope you are doing well. I thought about you all day yesterday. You are in my prayers. I hope the staff are taking good care of you and that you get a great stoma nurse. They are invaluable.

God bless

Rosiesmom

Sandy,

How did the surgery go? I hope you're doing well and on the road to recovery.

Hi Sandy, well you are on your third day, I hope it is going well. You have been in my thoughts and prayers.

Rosiesmom

Hi. I have been thinking about, I hope the surgery went well. Post when you can with an update. I am sure we are all anxious to know how you are doing.

Sincerely, Rosiesmom

Thanks Rosiesmom for following up with Sandy via the posts. I hope that she is doing well and slowly gaining her strength back. Sandy, if you are reading the posts, know that my thoughts and prayers are with you. Looking forward to hearing from you and seeing how you are recovering. Take care. LH

Well, I'm back..and thank you all for the prayers!! The surgery went....well, let's just say it went....I'm still really sore, there are stitches on my bottom, and staples on my belly..what a mess I am! It took a full 7 days at the hosp. before I finally had a BM...I got too excited, and started removing the bag instead of just emptying it....but all in all, I did a pretty good job, and was finally discharged Friday afternoon. I didn't have another BM till Saturday afternoon, and then had like 5 in a row! It seems like every time I cleaned out my pouch, sat down to relax, then here comes another! I think I'm going to just quit eating....... :) It really means a lot to me to see everyone's concern on here...it really helps me to know I am not alone in this...sorry, I don't have a smartphone, just a desktop computer, and my butt really hurts sitting here, but I promise, I will be back! I still have many questions, and so much to learn, and I really look forward to continuing our friendships on here! Again..thank you Rosiesmom!! Thank you Mark1070, thank you LadyHope!

Wow, it was so great to turn on my iPad and find that you had posted. Happy to hear you are home and that all is progressing to plan.

Since you say you have staples, I take it your surgery was not done orthoscopically as mine was. As far as the stitches in your bottom, yes, they are a bugger. I think for me they were more uncomfortable than the surgery. If you have a Costco nearby, they have an amazing gel-filled cushion. It was a godsend for me and I still use mine, like when we took a nine-hour flight to Europe recently or if I am going to be sitting in a car for over an hour or so. I hope you had a good stoma nurse and as far as products, you will find what works best for you. Most companies will send you samples. Continue to take very good care, truly the worst is over. It is all about giving your mind and body the time it needs to heal. We are all here when you need advice or just a good moan, lol.

God bless, sincerely Rosiesmom.

Hi Sandy, I am so glad that you are doing as well as to be expected immediately following surgery. It is good to hear from you. Please remember that all of the healing, medically and emotionally, takes time and it is a process. Be gentle with yourself as this is new and was new to everyone of us at one time here on this site. Don't forget to rest, rest, rest.... If you have a question or many, just post and someone will be able to direct you.

Yes, my bottom hurt for some time. As RM shared, my scar still pulls when I sit for long periods of time and I am on the road 5 days per week for my job. Our bodies need time to adjust to the operation and the change. My body still is adjusting and it has been over 2 years. Strange things happen from time to time and I monitor it. If it improves, terrific, and if it gets worse, I call the doctor for peace of mind.

Again, so glad that you are back and on the mend. Take care and I look forward to hearing from you when you are up to it. LH

Oops, sorry Sandy. I meant laparoscopically, not ortho, when I referred to the type of surgery. Rosie must have had a senior moment. 😷😷

Putting the pain aside, it makes my heart smile to see the posts from y'all...thanks!! Like I said before, it helps just knowing I'm not in this alone....bless all of you! Ok..here is 1 question....how do you know when it's time to change your bag? It's been on since Friday, I have had bowel movements, which I cleaned the bag each time...but here it is Mon morning, and the bag looks a little 'green'....just how often should the bag be changed? Oh, it's possibly discolored because of the odor drops...not because it's nasty....lol....

Hi Sandy, just happened to be on when you popped in. This is a subject where you are going to get a lot of different opinions, so I can only tell you what I do. Firstly, it may depend on whether you use a one or two-piece system. I use Coloplast Sensura pouches and bases. The opening in the base is trimmed to size (remember your stoma will shrink in time), the pouches snap on and have a Velcro closure at the bottom. I change bases at least twice a week and I change pouches after every bowel movement. I have a handheld bidet spray (Lowe's or Home Depot, about $30-50, well worth it). I use it to rinse the pouch when at home, then I wash the pouch in warm water with antibacterial soap, rinse well, and hang in the shower to dry. Little plastic stick-on hooks work well. If I am out, I change the clean flange with a baby wipe and dispose of the pouch using either the blue bags or doggie poo bags. Coating the flange around the stoma with Vaseline makes cleanup easy. I keep an unscented Chapstick in my away-from-home kit; it works just like Vaseline and is easy to apply. I can honestly say I have never had an odor issue other than the obvious, like everyone else. Body waste never smells like roses. LOL. I hope this is of use to you. Oh, you may have to have your surgeon send a letter of necessity to your insurer, as most of them only want to give you 30 pouches a month. This way, I got them to bump it up to 40. It was a hassle the first few months, but it eventually got sorted. As I said at the beginning, there are those who will differ. You will find what works for you, but I don't think days is a good idea.

Take care, you sound like you are coping well. Keep it up. Your fellow ostomate, Rosiesmom.

Hi Sandy, it's Rosiesmom again. When I read over what I wrote, I felt I need to clarify. Not after every B.M. You can let it accumulate; the weight of the pouch will pretty much tell you when to change. I change the pouch 2-3 times a day as needed.

Sorry for the confusion.

Hi Sandy, how are you doing today? I hope a little stronger each day. And you are home. That is great news.

Regarding my pouch, I have an ileostomy that produces, although slowly, most of the day; so I need to empty about 4-6 times. And, it really depends on what I eat during the day. I change the entire pouch once a day in the morning because the filter becomes clogged and stops working. I also think the pouch begins to hold odor and I don't want that issue. I also use deodorant drops each time I empty. It helps make me feel better. Because my ostomy deodorant is blue, it makes the contents of the pouch a funny color at times. I do use some clear deodorant from time to time but feel the blue stuff works the best. I like M9.

I also rinse my pouch with warm water each time I empty unless I am in a public place and the bathroom does not have a sink in the stall. To help clean the pouch without easy access to running water, I will bring in wet paper towels to clean the opening of the pouch into the stall with me. It helps. I have tried emptying standing up but it did not work as well for me. Some can stand and empty very well. I need to practice....LOL.

Try lots of new items and you will find the one that is best for you. Don't get discouraged if something does not work well. This is the trial and error period. And, as Rosiesmom said, your stoma will change size as you heal too. Mine was rather large and puffy post-op and today it is slimmer and slightly shorter.

So glad to see you posting and getting around. One day at a time....take care. LadyHope

Welcome back, Sandy. It's great to hear that surgery went well. Post-op can be bumpy, emotionally. Just ride it and keep thinking about being healthy and happy in the near future.

Regarding pouch changes -- How often you change it depends on several things, like the type of appliance, how good of a seal you achieved, and whether your skin gets irritated if you wear it too long.

I use a two-piece system...wafer and bag. Doc prescribed changing twice a week. I've heard people say they've gone a week or more though.

I will say that I am quick to change it if I sense that it's not sealing well. I work in an office, so it's important that I don't smell like a bag of poop. Lol.

If the skin gets irritated, don't hesitate to try a little Calamine lotion or Cortisone 10. I also often supplement the adhesive with medical tape, especially when planning activities where I'll be sweating a lot.

Let us know how it's going!