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bogongbelle

Life after stoma reversal

I have been diagnosed with metastatic bowel cancer in the lungs and lymph nodes, almost a year after initial chemo, radiotherapy , surgery, then stoma reversal surgery. While I am asymptomatic at the moment, I am struggling big time with life after the stoma reversal. After initially making progress, I'm now experiencing up to 30 bowel movements a day, 8 months post surgery. Have kept food diaries etc, but what is fine one day, is not the next. As a result, I'm virtually house bound and my social life is non-existent. Use Gastrostop and Lomotil in industrial amounts, which ,again, only works sometimes. As a result, I'm seriously considering getting a permanent colostomy. Would love to hear from anyone with similar problems or who has decided on the permanent solution .

Gary not Gavin

@bogongbelle . Still early days for me but have had the stoma bit radiotherapy and chemotherapy treatment surgery next but if you're suffering now makes you think about having a reversal please keep me uptodate

Baxter2

Good morning @bogongbelle and a very warm welcome to the forum!

I’m sorry to read of the awful difficulties you’re having just now which is dominating your life by the sounds of it! I’m sorry that I don’t have any words of wisdom for you as I’ve never had a stoma. I’m pretty sure there will be others along quite soon who have and can share their experiences with you. There is a downloadable booklet about regaining bowel control but it sounds like you’ve perhaps tried everything!

I really hope you find a solution to this problem and can resume your life once more!

Lots of love,

K💚💜💙💛❤️

bogongbelle

Thanks, Baxter. I have tried everything and have done extensive research, but what's left of my bowel continues to defy me. Another crappy (literally ) day today. Maybe tomorrow ...

Lizalou

This sounds miserable @bogongbelle ! I don't want to make you feel even worse but I had no real problems after my reversal. What does your surgeon say? I would definitely say you need more help.

Have you seen the information from the nurses about Lower Anterior Resection Syndrome (LARS) under 'Bowel cancer treatment and side effects' ? It is obviously a major issue. Hope you can get some relief soon. :x::x:

Chas

Hi @bogongbelle you having a rough time. I had a reversal about 9 months ago, the first few weeks were difficult but mostly settling down now with little problems. Seems you do need help and advice from your team. I hope everything eventually works out for you. :x::x:

mem

Hi and a warm welcome from me too @bogongbelle.
Sorry to hear your having so many issues after your reversal. Must be very frustrating for you. Like you, I also had rectal cancer and had a lower anterior resection followed by a stoma reversal the year after. It hasn’t always been plain-sailing and has taken my bowels a while to get back to normal-ish. I still have the odd issue to date, but its doable for me. I am aware that having rectal cancer surgery/reversal can take longer to recover/settle from than a higher-up resection. I do think in your case that it sounds extreme and far from doable, so I would definitely seek some help and support. You can’t live your life like this.
I’m also sorry to hear you have been diagnosed with lung mets and just to say, there are a few of us on here that are dealing with lung mets too, so if you ever need any support or advice please know we will be here for you.
Sending love :x::x:

Hollyhock

What a nightmare @bogongbelle , I haven't had any personal experience as I am yet to have my reversal but have looked into it quite a lot as I have been told to expect issues as my tumour was ultra low. Have you looked into irrigation? My nurse said this is sometimes used as it clears out you bowel leaving you free for the next 24hrs. It would be time consuming doing it every morning but then so is sitting on the loo 30 times a day. If that didn't work personally, I would be tempted to go for the colostomy, at least you would be able to go out and meet friends. Big hugs to you :x::x::x:

bogongbelle

Dear Lizalou, Chas, Mem and Hollyhock,
Apologies for the group reply. Thanks so much to all of you. Until a few days ago, I didn't even know this forum existed and it's great to hear from others in the same boat. Yes, Hollyhock, my tumour was also ultra low, but my surgeon reckons the damage was done from radiotherapy , also leaving me with some urinary problems. Living in a reasonably remote area, it's a 400km round trip to see my doctors and, when I do, I usually fast for at least 12 hours so that I can make the trip, since the first (and last) 100kms offer no toilet stops. As a result, I'm loathe to do that too often, although I expect to resume chemo in the near future, so it'll be a bit more regular. Am still toying with a colostomy, but today is a good day (so far!), so I might change my mind again. Will keep you updated. :x::x::x:

Lizalou

Oh my goodness @bogongbelle , you do have a long trek to hospital! I moan about my 45 minute drive to my main hospital! And no, I am never 100km from a loo (mind boggling here in the UK, except perhaps in the north of Scotland, but at least there are lots of bushes around)

Sorry, no practical help at all, just lots of sympathy. :x:

Mosyposy

Hello @bogongbelle , are you on Facebook? There is a closed Facebook group called Living with Low Anterior Resection Syndrome which is a great support and a place to find help and advice. Worth joining Facebook if you haven’t already. I am 2 1/2 years post reversal and over that time things have gradually improved but I can still have a bad day. It’s the unpredictability that is so difficult isn’t it! Those of us who have had rectal cancer, a temporary Ileostomy and then reversed take longer to settle down. I didn’t have chemo or radiotherapy but I still had horrendous problems after reversal. Hope things get better for you. :x::x:

bogongbelle

Thanks for the travel sympathy, Lizalou. I'm in Australia and, on my journey, even the bushes are scarce! Having a good day today, cloudless blue sky, temp in the mid-20's and I just finished the cryptic crossword. Life is good :x::x:
Many thanks, Mosyposy, for info on the Facebook group. Will get straight on to it. Did you ever consider a permanent colostomy? I know my time is limited ( unless some genius comes up with a cure!) and would like to spend what's left of my life having fun, not keeping toilet paper manufacturers in profit!
Oh, Michael, you sent me a pm, which I somehow managed to erase before I read it. Is it too much trouble to ask you to resend it?
Sending lots of sunshine to you all :x::x::x:

Mosyposy

Hi @bogongbelle. No, I have never considered a permanent colostomy. My Ileostomy was really badly behaved and I found it so difficult to cope with. It ruled my life and I was so glad to get rid of it. At first I did feel I had swapped one set of problems for another but gradually things have improved for me. I feel lucky. There are people on the Facebook group I told you about who are talking of their decisions to go for a permanent colostomy.By the way, if you want to message someone on this forum it is best to put a @in front of their name. That way they get a notification that they have a reply. Sending you lots of love :x::x::x:

bogongbelle

Thanks @ Mosyposy . You have no idea what a klutz I am with anything technological ! My ileostomy was fairly straight forward, which has me leaning towards that permanence. However, have just experienced a few fantastic days ...OK, except for last night's salad, which I swear to stop eating after each adverse reaction. It's the only thing that causes "accidents" and I should know better, but I love a BBQ steak and salad! A few well-placed GastroStop dulled the effects a bit and I was able to get to my pre-school music class (I run it) this am, followed by the regular Friday coffee morning with my mates. Life is good and the weekend ahead promises great weather, some live music and quality time in the garden. Right back at you with the lots of love xxx😀

Baxter2

Oh @bogongbelle, what I’d give to transport myself to Oz and soak up that lovely sunshine! Sounds idyllic! It’s been so cold and snowy here! I’m glad you’re sounding more upbeat having had a few fantastic days and have a great weekend to look forward to! Long may that continue!

Lots of love and best wishes,

K💚💜💙💛❤️