Ultra Low Ar

Hi Everybody,

First of all i'd like to thank all the good people on here for sharing their details - it really does help to know your not the only one.

I'm 42 live in Sydney Australia got diagnosed with rectal cancer june 07 and had 6wks of chemo and radiation treatment 

I had an ultra low anterior resection in oct 07 and i have an ileostomy. I'm on 12 cycles of chemo now - De Gramont.

The surgeon wants to do the bag reversal now, The onc wants me to wait until the chemo is over and my own doctor advises to have an anal sphincter test beforehand to make sure its strong enough to hold back BM's Has anyone had one of these tests?

Also I'm terribly worried about the thought of having 15 - 20 Bm's for months or even longer and not being able to hold it in!!

I'd really appreciate hearing if anyone has had good results and got back to much fewer Bm's in a few mths.

 Thanks and good luck to all, Mick

Hi

You and I are on very siimiliar courses. I was diagnosed July 07 with stage 2 rectal cancer very low in my rectum. Doc said I was a 1/2 inch away from a permenant colostomy. I did 6 weeks of Chemo (5 FU) and radiation. 4 weeks later I had my first surgery to remove the tumor.. they found cancer in 6 out of 18 lymph nodes... so it turns out I was stage 3.

Two weeks after surgery I had horrific pain and ended up in the emergency room with a blockage. The doc did not want to operate because he felt my life would be at risk so soon after the first surgery. So he hospitilized me fed me through TPN and waited... he wanted to wait at least 6 weeks to do the surgery. He believed I would be healed up enough and he could go ahead and reverse the iliostomy at that time. I went 4 weeks without a bite of food only TPN which I was able to come home with after 2 weeks in the hospital. Finally at the 6 week post op mark we set up surgery. He found 3 blockages.. mostly adhesions and reversed the ostomy. That was back in November. I am now 4 rounds into my 12 rounds of chemo.

As to how I did after the second surgery.. it wasn't too bad actually.. I expected it to be worse. I would have normal bowel movements but more frequent and sometimes I would skip a day or two.. but it really wasn't too bad. Now after starting chemo it has gotten bad.. diarrhea, constipation and going10 plus tiimes a day, then skipping a day... when I have diarrhea I end up taking imodium which will then shut everything down for days.. I sometimes have to take miralax to get going again.

As to you having the reversal.. my doc originally told me they would do surgery AFTER the 6 mths of chemo. His reason was to allow things to heal better. He said chemo slows the healing process and he would not do it while I was on chemo. If I were you I would wait if possible. As to a test on my sphincter muscles.. I didn't have that.. But the doc did do an exam and said he felt like my "new" rectum was responding well.

 I hope this helps.. if u have any other questions please feel free to ask.  How are you doing with chemo? I am having a really tough time. I have almost no energy and feel sick most days. I am doing Folfox every other week for three days. Are u on the same chemo?

Good luck to you... this is very hard I know.. by the way I was 42 when diagnosed.

Anita

G'day Anita,

Thanks for the reply, i'm sorry to hear that your in the same boat as me but glad to know you can share all the expreriences you've been thru.

I'm on the De gramont chemo which is 5fu and leucovarin. I notice most of the others are all on the same as you with the oxiplatin - folfox. I'll be asking my onc about that one next time i see him. I am going to wait until the chemo is finished before having the reversal as it is better not to interrupt the chemo cycle - i've already had to skip a week due to bad bloods and liver not well. 

Are you eating only the good foods and staying away from chocolate coffee alcohol? there is a lot of food i cant have cause it makes me runny so you really have to know what your body likes and what it doesnt. Also take all the meds they give you when on the cycle and go for a 20 min walk evry 2nd day or more if your up to it.Also they told me to drink lots of water. 

My tumour was right down to the anus so thats why i'm so worried about being able to hold it in. they also took out over a foot of bowel. You mentioned about a new rectum?? is this like an artificial one - ive heard they can do that at the sloan hospital in the USA. Are you over there or here in Australia 

It sounds like your over the worst now and getting better. Others have had years of trouble adapting to it all. I guess it's a matter of just doing it and hoping for the best rather than living with a bag and never knowing for sure.

Thanks again Anita and keep in touch, Mick 

Hi,

I am also from Australia. (Melbourne)

In my case I had low rectal cancer and it was probably stage 3 (with some suspicus nodes showing up on CT). I was very keen not to have a permanent colostomy, so went through the continuous chemo and radiotherapy before surgery. In this case it reduced it down to a very small size and despite my surgeons views that I should still have an APR, (he argued that the margins before radiotherapy should be used), I got my way and had an ultra low anterior. I had a covering ileostomy.

In relation to reversal my oncologist recommended that I wait until after the post surgery chemo to have the reversal also. In my case it turned out a moot point any way as the gastrographin enema x ray showed a small leak (myaren't they fun!), so I had to wait another 3 months any way.

I am now about six months post reversal and things are not too bad. I am just taking 3 gastro stops a day and going about twice a day. But be aware the first couple of months will most likely be very difficult. I found that those in hospital talked about a few weeks only. Dont believe them, it will get better but for us "ulta lows", it will take longer. (It never ceases to amaze me how the medical profession by and larger thinks that they should underestimate the effects of treatment. But thats another story).

My only issue I now have is the occasional leakage of a small amount when I exercise. I suspect this is due to the reduced sensation I now have probably caused by the surgery scare tissue and radiotherapy. I will ask my surgen about bio feedback in relation to this when I see him and see if this. Does any one know about this? 

Good luck