Permanent stoma

As I read your response, I cried for all of us. Its so hard to deal with, honestly. Nobody knows how hard until we're there. Thanks for telling her she is still a beautiful woman, and that she is still herself, I felt that deeply. Margret thanks again xXxX tealribbons2013

Hello Margaret,

like you i hoped for the best post reversal although my reversal came way ealier than intended due to needing emergency surgery.

To be honest life was pretty horrid for some months post op, even taking 6-8 loperamide a day. I still took to wearing tena lady pants when leaving the house to feel secure as my bottom seemed to have amind of its own!

I took to wearing the "pull ups" at night if I'd had a bad evening, just to make me feel safer about getting to the loo in time.

A year post reversal my surgeon suggested I tried a low fibre diet and my life became more normal, 3 years later I am still on this regime.

It does mean minimal fresh veg or fruit, soft cooked of both is easier to deal with.

The plus side was that I was able to retunr to Supply Teaching. I still have to be careful what I eat, to avoid rushes to the loo. My preferred medication now is the immodium instants, they melt on the tongue, I get them on prescription.

Be prepared for low days and hope for the best. I still tend to hve a pair of the disposable pants in my car just in case & yes sometimes I still need them.

On the plus side, we have come through major surgeries and our cancer has been removed.

All the best,

Anne

Hi Annie

I am new to this forum, I hope you dont mind me asking you or anybody elsecon this forum who maybe able to give me some advice.

I had my reversal 4 weeks ago and feel like i have just been sent home from the hospital with very little guidance about the do's and dont's.

I am passing feaces but now have extremely painful piles which I went to my gp and she gave me some cream to use but it does not seam to be easing the pain and discomfort.Did you experience this at all.

Many thanks kathy xxx

Hi Kathy, as my reversal was an emergency when 500 miles away from home, I wasn't given any advice at all. My stoma blocked when visitng an 80 year old aunt near Cambridge & I had emergency surgery reversal earlier than intended. Not allowed to fly & unable to endure a 10 hour car journey I returned home to Aberdeen by sleeper.

My bottom had a mind of it's own for a.long time & yes became very sore. I used a wonderful pressurised cushion, not the cheap circular one but an excellent one provided by district nurses, it certainly made sitting easier. 

After trying various creams the one I found best & still use is Cavilon barrier cream which I get on prescription. It helped my tail end.

My surgeon suggested I tried a low fibre diet to lessen loose & way too frequent bowel movements, as liek you my tail end was suffering from too much use & that then became another problem.

Once on the low frobre diet I could leave the house without fear of accidents & even got back Supply Teaching after a few months.

I did take up to 8 immodium capsules a day but that didn't used to stop the poo.

Now, still on a virtually low fibre diet I can go out & about, no longer wearing Tena lady pullups which were a life saver at times & great for reassurance. The downside is my diet is not very nutrient healthy as fresh fruit & not very many veg mean I know I will be spending some time on & off the loo in the next few hours. My GP & I decided quality of life should come first so the low fibre diet it is.

I can eat bananas, peeled apples, cooked fruit & mashed potatoes but only a very little of other veg. I do take a daily vitamin pill but that's all & have now got myself back swimming. I'm adverse to exercise at the best of times but now I'm cancer free for the 2nd time, I decided I needed to addres the weight that has slipped on during 4 fairly sedentary years. Nothing drastic though, it will be gentle exercise & swimming is the only thing I enjoy doing.

Hang in there & I hope you have a sympathetic partner. When visitors came to stay I would bagsy the downstairs loo for my personal use as I often needed to dash suddenly on & off over a couple of hours, even needing to sit back down having washed my hands before exiting the loo!

Life is still unpredictable when away from home but I'm hanging in there. Actually away just now in an olf fisherman's cottage in Sandend near Portsoy on the Moray coast, watching the tide come & go - very peaceful.

Hope something there helps,

Anne

Hi Margaret

My name is kathy

I had my reversal 4 weeks ago now and was wondering how you are getting on as I see in your post you were due to have your reversal about a month ago.

I wish you all the very best.

Take care best wishes kathy xx

Hi Kathy

Thankyou for your good wishes.  Unfortunately my reversal originally planned for early November was cancelled.  I was admitted to hospital a few weeks ago with gallstones, the pain was horrendous.  I was told by the medical team that my gall bladder had to come out.  I have been given medication and a few stones have been passed, and the pain is better.  But the gall bladder op is going to happen first, and after sufficient recovery time then the reversal will be done.  So, I am looking at next year now, which is very frustrating.  I have had enough of hospilisation this year, and I hope that after my reversal next year, that will be it.

While in hospital recently I was amazed at the number of other patients with stoma bags, for all sorts of reasons, not just cancer. Talking with these people about the trials, as well as some of the funny sides really helped.

Thank you again for your good wishes, and I hope you are coping well.

Good luck

Margaret

Hi Margaret

I am so sorry to hear that you have had to have your reversal delayed due to you having the gall stones to deal with.I am pleased the pain has eased for you since passing some of the stones.I wish you well and will be thinking of you I hope your op all goes smoothly for you after all you have been through.

When you are feeling up to it please let me know how you are getting on.

I think being able to talk or write to people who have experienced the same or similar situations can be very helpful for the both of you.

I take one day at a time and deal with whatever happens on that day I find that better rather than having high expectations and putting a lot of pressure on myself.

Our Daughter is getting married in January and I am hoping to be as well as I can by then so as I can enjoy her very special day with her.

Well take care Margaret my very best wishes to you will chat with you soon love kathy xxx

Hi Kathy

Thank you for your good wishes, thankfully I have no recurrence from my gallstones, but I have to watch my diet carefully, I am as thin as a rake anyway, but I did enjoy the odd cream cake, but no longer allowed.  Next week I am to see the surgeon who is going to talk me through the gallbladder op.  My son is a paramedic and knows about these things assures me that this is a very common op, and there is nothing to worry about.  So I am not going to.

I really agree with you that being able to share experiences with people going through the same things really does help, I am so glad I discovered this website.  I also take each days as it comes.  I used to make big plans ahead, holidays, days out even taking on some decorating, but I no longer do that.  I don't feel confident anymore as to what is round the corner, such a shame because I liked having something to look forward to.  But I am not complaining, checking out this website has taught me there are so many folk out there just like me, and sadly not fairing so well.  I try to tell myself how lucky I am.  My family and friends are so supportive.  

Your daughter getting married is something you must look forward to and focus  on. I will pray that you will be well enough, and of course you will. What a good start to next year and I hope it will be the beginning of things getting better and better.  Good luck to you all.

Margaret

Hi Kathy

Thank you so much for remembering me.  It's taken quite some time for me to get over my gallstone op, but I have improved dramatically over the last couple of months.  In fact, my Stoma reversal has been booked for end of this month - just over two weeks time.  Well Kathy, I want to make you laugh.  I think I am going to miss this bag!  I have had it sooo long I had learned to live with it.  Also I am fed up with operations and hospital stays. But, I am trying to be positive, maybe this is now closure to this dreadful disease that has caused me so much distress over the last 18 months.

I think of you, and it seems you have come to terms with your situation much better than you thought you would.  You are an inspiration.  I hope your daughter had a lovely wedding and everything went without a hitch.  You must have been very proud.  Good luck to you, take care and we both can now face anything that life chucks at us.

Margaret

 

Hi Margaret

What a lovely suprise to hear from you.

I am so pleased you are now getting over your gallstone operation.

I am glad you now have a date for your reversal I bet you cannot wait.

Our Daughters wedding was just so beautiful every thing went to plan with no hitches at all.I managed to spend the night on the dance floor to everybody's amazement no one could believe how well I done .I felt so proud of my Daughter she looked amazing.

Myself and my husband done a charity walk in April 2015 to raise funds for a new key hole cancer unit at the hospital where I had my operation we raised £100.The weather was awful but I was determined to do it.

In June I joined a support social group for bowel cancer patients.

In September this year 2015 I attended a course run by macmillan I found this very helpful.

Well Margaret I wish you well and hope your reversal goes smoothly for you please keep in touch and let me know how you are getting on I will be thinking of you.

Take care love kathy xx

Hello Margaret I can only tell you about my own experience i had colon cancer stage 3 resection and chemo I had the bag for approximately 10 weeks after reversal i had constipation for about a week i have gone completely back to normal you have got to remember that a lot of the people on here are in the minority no disrespect to them and can only feel sorry for them as it's a terrible thing to go through but your chances of a complete recovery are very high good luck and god bless.