Folfox and Ileo reversal

[David from Canada]

It's been a while since my last post. I've been very lucky and trying to get my life back to normal but I don't know if it ever will be.

I finished up my Folfox in June 2016, did a dose reduction half way through and glad I did. The Neuropathy was ok for a month, then got worse. Currently I'm 8 months post chemo and my hands are back to normal but my feet are still pretty numb. I'm going to go to see a specialist soon but the docs say to give it time and still expect a good recovery.

My ileo takedown was September 2nd and that has gone really well, the urgency was pretty strong for a few weeks and I had some leaks at first but gradually things have improved. I've been up to an Imodium every day but now am down to a couple a week. Metamucil in the morning has been a big improvement. I'm now (5 months post op) having almost all perfect days, the urgency isn't too bad and I'm not worried about going out or having to find the nearest bathroom.

Wishing you all the best on your journey here, this forum has been a great help to me and I'll always be greatful for for the support I received.

David

[DarknessEmbraced]

I'm glad that things are going well for you!

[mct]

Hi David. I'm a fellow Canuck. Thanks for your post. I also have a LAR scheduled for mid Mar 2017, and surgeon said I'd likely have a temp ileo. I'm so nervous about it, but your post about surgery and the reversal going relatively well, is encouraging. I hope your foot neuropathy continues to improve and that your full recovery is imminent. I'm older than you (51) and have been shocked by how many young people have this cancer. Wishing you a full, and cancer-free, life!

[David from Canada]

MCT,
Hope your temp ileo goes well,

A bit of advise for you if you want it:

1: There are hundreds of different ostomy flanges/bags etc, if you have any issues with leaks there is a solution that your nurses will find for you.
2: I tried a lot of different supports for the bag and ended up wearing the Stealth Belt every day, it made a huge difference to my quality of life

It's a long journey but I'm glad to be on the other side of it and lifting the NED life. There is always hope,

David

[mct]

Thanks for the tips David. I've bookmarked the Stealth Belt site

Mich

[Lydia666]

My reversal went very well too. Never had a leak/accident etc. It's almost back to normal besides the gas! Ugh!

[AussieAssCancer]

G'day David,

Always good to read positive posts and even more so given I have only just had my ileo reversed and in that sense an a little behind you (I should have had mine in Sept/Oct last yr but my original surgeon shafted me).

Anyways mate, all the best for continued positive days ahead.

Geoff

[Pita]

Great news David!!! Best wishes to you and prayers for NED forever. oxo

[Marylandmaniac]

Thank you for posting this!!! I will have mine reversed in a few months and I have been so worried due to so many bad stories I have read. I try to tell myself that everyone is different and to not worry but I do. lol Reading the positive stories make me feel hopeful. So glad you are doing okay.

[Nelbel]

David,

So glad to hear you're doing well. You are a few months ahead of me. Re neuropathy, my onc said "good news, 80% of people find it completely goes away, bad news, it can take 18 - 24 months". I hope you continue to see improvement.