@stella...Welcome Stella! A tough start with a better beginning & bright future & a support team are always great to have. Thank you ALL for sharing your stories. It's good to read & reflect on how life was to having the HOPE supplied through such great information & tips & fabulous Videos! I think anyone here agrees Eric is our secret Angel!  I know I  truly felt he and those here are a true God send for me.

I hope your health continues to improve & that your supporters at home never tire!  As Eric said we are here to help where need be. Be as well as you can be. 

@glenn-giroir....For me it's always been about my ileostomy surgery.  But reading the personal experiences here brought me right back to times I dealt with excruciating pain & even passing out on the toilet.  Something I've rarely talked about.  Since the age of 10 I had been  dealing with "bad tummy aches",  I'm now 63.  On our honeymoon I had one of my bad  tummy aches & at 22 learned  it was not normal & no, it shouldn't hurt to poop like that!!! 

My hubby was the 1st to tell me to talk to the doctor & he even came to the appt. to make sure I did. & to be sure it was taken seriously!!  Jump from 1980 to 1995 when I met the Surgeon who "bothered"! He "bothered"  to run tests other had not.  I appreciated the GI's who sent me to other GI's for help needed to diagnose my situation. The GI who ran that expensive complicated test is my hero to this day.  He ran new tests & one not covered by B.C. Medical.  It was expensive.

I rec'd a phone call the day after tests & was asked to go to his office the next day.  My hubby had to work so my Mom drove me into downtown Vancouver.  We waited a short 5 min. &  I sat in front of the Doctors desk &  watched as he thumbed thru papers then got up & showed me the Xrays.  I think I was holding my breath as he said he  highly recommended  removing my large bowel &  make a J-Pouch. Tests showed my large bowel was not functioning at all.  I was at great risk of perforation.  That was the week before Christmas & surgery was booked for the 1st week of January. 

Listening to him tell me about my surgery &  hospital stay & what to expect I remember feeling streams of hot tears down my face. They just fell out, no sobbing just tears galore. He kept passing me the kleenex box & I kept apologizing, he kept telling me not to! lol!  We were a good 45 min. in his office. His last comments made me ask if he could tell the same thing to my MOM.  He got up & called her into the office.  She was nervous & I found that interesting. This was the women who told me repeatedly as a child that everyone got tummy aches & if I was done in the bathroom to go outside & play now.  I think I needed to know she had no choice but to take it seriously.  

I don't remember exactly what he said to my Mom, but I do remember  feeling relieved that she was hearing this from a specialist & biting my tongue when he said I had to be a very strong person to have endured so many years of tortuous pain.   When he explained why the surgery was needed he used the word tortuosity to describe my bowel.  Those words ...honestly, I don't think I can even explain how I felt but the tears flowed for the 90 min. drive home.  Still, only tears. 

When my hubby finally came home that night he never took his eyes off of me. He took my hand &  told the kids to set the dinner table while we went to our room to talk.  Closing the outer door & lol,  incase the kids followed & tried to listen we went to our walk-in closet & closed that door too. There I told him all the Doctor said.  The love warmth & support my hubby gave me was amazing. He made sure I was well rested over Christmas & well prepped for  surgery. He made 4 CD's of music I liked to listen to take with me.  He was amazing!! I came up with my personal motto in that closet...lol!  I often heard myself say..."I'm Okay So Far!! " and  I really was & I still am,' okay so far!  

A few years later my J-Pouch started giving out & other sections of small intestine began failing, there were many challenges starting with malnutrition, Anemia & about 7 emergency surgeries from blockages, a nasty infection, a 13 1/2 month hospital stay in 2 different hospitals one 6 hrs from home.  Finally & gratefully meeting my Stoma in 2009.  Enter...Pancreatic cancer taking the love of my life & biggest supporter 5 months after my Ileostomy.  Eight years in & desperate for information I seemed unable to find anywhere else, I turned to the much dreaded computer & internet where I gratefully stumbled onto one of  Eric's Videos.  The rest is history & I'm still okay so far! 

@stella. Hey Stella, I’m a stage 2 rectal cancer survivor too. It has been just over 5 years  now since my treatment, and I’m doing fine. We are lucky - stage 2 has a good survivability rate. The chemo you are on now is likely for insurance - in case any rogue cancer cells were missed in surgery. Chemo and radiation aren’t fun, but all of this will be behind you soon, and then you can start getting on with your life. Are you doing FOLFOX or Xeloda? How much more time on chemo? Hope you’re eating OK. You have found a great site here, and I will echo what others have said about Eric and his mission to provide the best information available for ostomates. You will find a lot of support here. Nice to have you aboard.

Laurie

@tigerlily

Thanks all keep encouraging me..

Laurie, I'm on Xeloda. I'm eating ok. the most concern for me now is my fingers and feet. The skin on my fingers is getting thick and dry, some peeling off of skin. I keep using cream but still worry and pray I can go through the whole chemotherapy treatments period. 11 more weeks to go. I need to use some toilet paper or cloth whenever I need to use force with my fingers to press or twist things, otherwise the rubbing on my fingers will feel pain .

Don't know why, it's not expected by doctor, I cannot pass urine by myself after the surgery. So I'm also carrying the urine bag with catheter, and the ostomy pouch. 

(I will search on other topic about protective ring. Just mention here in case no one has that problem before :

Will the swollen of the protective ring block the outlet of the stoma. I'm using coloplast protective ring, 4.2mm thick. After it swells, seems it goes up and same level as the outlet of the stoma. Do I need to worry about this?) Thanks

Stella

@stella I was on Xeloda too. I also had issues with my feet and fingers; I had to dose reduce when my fingers became raw and bleeding. Have you discussed dose reduction with your doctor? I think it happens quite frequently. You have to be able to function, and a 10% reduction in dosage might make a world of difference. It did for me. If you have neuropathy in your feet, you may have issues with steadiness on your feet, so keep an eye on that too. The other issues that you mentioned are not issues I experienced, so I think it’s best to speak with your doctor or ostomy nurse about those. Stella, 11 weeks is not a long time in the grand scheme of things, even though it may seem an eternity to you right now. Start thinking about how you’re going to reward yourself for making it to the finish line. By the way, if you don’t finish all 11 weeks (your doctor may decide you’ve had enough sooner than that) you still get to reward yourself!! Anyone who goes through this is a superhero. The name of this site may be vegan ostomy, but that’s just a cover for superhero site. Shhh - don’t tell anyone or they’ll be pestering us for autographs and signed photos, and then we’ll all have to wear disguises.🥸

Laurie

@tigerlily

Morning all.

thanks Laurie again. So happy to be in this forum. This forum not just where I can learn, it's where I can get comfort and caring love (except from my boyfriend, hehe). Thanks so much all.

Laurie, yes, I need to see the chemotherapy doctor once every 3 weeks to review my progress. He did say if the situation of my fingers and toes get worse, he will recalculate my medicine dosage. But you gave me more relieve that - reduce in dosage will not affect the effect of the medicine on me. I do hope the cancer will kindly leave me alone. 

By the way, I live in Toronto, I don't know who is my ostomy nurse. I was assigned to a local health network for a home nurse. But they came to teach me how to change pouch at the first 2 weeks after I was released from hospital and changed my urine catheter.  That have been done. Now, I choose to go to clinic to change my urine catheter. 

He he, I'm already treating myself with chocolate milk,  Portuguese tarts, chocolate cookies, etc. 

I will wear triple masks and face shields to avoid signing autographs.

(really feeling so much joy in this forum). 

@stella I am in London, just 2 hours west of you. Your hospital and your home care service will both have ostomy nurses. Your doctor should be able to connect you with one, and you should be able to request the services of an ostomy nurse through your aftercare nursing service. At my hospital, the ostomy nurses run a weekly clinic, which I attended early on. You may have a similar service at your hospital; you could ask your doctor about that. My own experience is similar to what I have heard many times from others - I was released from hospital with this “thing” attached to my abdomen, but very little information on how to look after it. That’s where Eric, and this superhero site came in - to help fill in the many gaps in my knowledge. That is Eric’s super power! Oh, and he also speaks Italian. (He probably has other super powers he hasn’t told us about yet.)

Laurie

@tigerlily Thanks Laurie, I will check with my surgeon.

@tigerlily Morning Laurie, the chemotherapy doctor stopped my medicine for one week and then reduce my dose for around 23%. Its been one week now on lower dose. My fingers pain reduced a lot and almost recovered. The skin on my foot bottom is still coming off but its' also healing.  Thanks again comforted me.

@stella Stella, I’m not surprised - it happens a lot. Getting dosage right isn’t exact for everyone; sometimes people can’t tolerate the recommended amount, and the side effects are too much to bear. I’m really glad to hear that your hands and feet are recovering.

You are getting closer to the end of your chemo, Stella. It will be finished before you know it. Just an FYI, a book that I found really helpful when my treatments ended was “Picking Up The Pieces” by Sherri Magee and Kathy Scalzo. It’s about learning to move forward after finishing cancer treatments. You should be able to find it at your local library, or Wellspring if you want to read it. Sometimes leaving the protection of the cancer clinic can be almost as scary as entering it for the first time. You can feel as if you’re on a high wire with no safety net. I found the book helpful in dealing with that. I am living proof that you can leave the cancer clinic behind. It has been over 5 years since my treatments ended, and it feels like forever ago. You will get there too, Stella. 

Laurie

@tigerlily Thanks Laurie guiding me. I will check out the book.

@stella...Hi again Stella...I have terribly dry feet & hands. Big flakes of skin off my feet.  I'm always turning my socks inside out to wash them.  Try soaking them in water then exfoliating very carefully.  Use a cloth if your dealing with numbness.  Then apply a hand lotion that has "Shea Butter" in it.  After trying many different lotions I  actually found the lotions from  Bath and Body Works  does the best job for me.  It has prevented the flaky skin & helped heal those areas. 

I order off the internet because I believe they closed their stores & went fully online now.  It's a  "24 hour moisture  Ultra Shea Body Cream  in 8 oz. Tubes".

wwwbathandbodyworks.com

They often have sales for buy 3 get 3 free, or buy 3 get 2 free. You can mix & match scents. I also use a Sugar Scrub from them for my legs too. They have Shower Gels as well.  Because my hair is so dry, I even use the shower Gels as a shampoo.   It's made a big difference for me.   No need for a cream rinse, lol.  I'm usually allergic to perfumed products but I find these do not bother me.  You can phone them to place an order also. Then you can ask about the mild scented names as well if you don't like harsh perfume products that may light up allergies.  

I've not had cancer, but have chronic Anemia from malabsorption.  I've lost a lot of hair but it's coming back now. Remembering my hubbies hair loss from cancer treatments, I thought I should tell you , about 7 months back I  started taking a vitamin for " Hair, Skin & Nails ". I almost can't believe my hair is actually coming back after 5 years of being so thin.  Believe me, I was afraid to even shake my head!  lol!   I also take a B 12 Vitamin to help with my energy levels.  PLEASE...check with your Oncologist before taking any vitamins* just incase they mess with test results or medications.  You wouldn't want that to happen.    If it's okay to take them,  when you go for Lab work tell the person drawing blood that you take them too. Only take the recommended dose on the bottle.   You can likely check with your doctor over the phone by asking the secretary to ask him/her for you.

I think Cancer patients are very brave & strong people!!  You may not feel brave & strong but you really are!  You did good reaching out here.  Take good care of yourself & get the rest you need & drink those fluids.  They are so good for your whole body including skin hair & eyes.  We are here for you in all ways!  Have a great day today.  

@dlkfiretruck. Thanks Linda again, you guide me so much and encourage me. Yes, I really feel so much be comforted in this warm family.

@dlkfiretruck Linda, Stella isn’t talking about the normal dry flaky skin that all of us experience; she is talking about a chemo side effect, which is very different. She should only use prescription topicals (prescribed by her oncologist) for this problem. Sometimes chemo can cause neuropathy and a sloughing off of healthy tissue (not just the dry, dead skin flakes) of the fingers and feet, which leave those areas bloody and exquisitely painful. This often leads to a reduction in the chemo dosage, as in Stella’s case.  When Stella has finished her treatments, and has healed, that is the time she can consider over the counter products to combat normal dryness.

I experienced the same kind of problem during my cancer treatments (which required my dosage to be reduced twice). I often joked that I could have committed the perfect crime because I literally had no fingerprints. Just bloody messes where my fingerprints used to be. They did eventually grow back, thus ending any thoughts of a life of crime.💸

Laurie 

@stella Hi Stella, I had some similar, though lesser, side effects from chemo, also - the skin on my hands and feet felt so stiff and sore, like I was swelling from inside, and I lost my fingerprints, and my nails turned blue, and my cuticles dry, stiff and peeling. My first chemo rounds were infusions, the second set six months later was changed to pills; the oncologist stopped those a week early. It didn’t take long for my skin and nails to return to normal each time - well, it took awhile for the blue to grow out. May it help you to know that we are thinking of you! 

@llholiday Thanks LL, thanks encouraging me. I will walk strong thinking you all are with me.

@tigerlily...Thank you, now  I get it. That sounds so painful really.  That lotion helped my hubbies skin when he was having cancer treatments but yours sounds so much deeper.   I'm sorry you have to deal with that on top of what your already going through.  

Very brave indeed!!

My own dryness & numbness in my hands & feet came on at the time I was diagnosed type 2  diabetic. That's why the doctor tested me for it. Add to the baby finger nail discs of skin &  rawness  & general dryness, I felt desperate for that dry deep itchy thing to stop. Through diet correction, I'm no longer diabetic.   

@dlkfiretruck Wow, Linda, kudos to you for getting the diabetes under control through diet. My 87 year old father has just been diagnosed as pre-diabetic, and I am having a hard time convincing him that dessert alone is not appropriate as a meal. His response is that he has lived to a ripe old age eating what he wants, and while there is some truth to that, I don’t think it’s a good attitude. So now I am searching the internet for sugar free cookie and muffin recipes to try to keep the diabetes at bay.☹️ Good grief.

Laurie