Calling time on your reversal

[smudgesicle]

This could be a long one folks, but the question in essence is how long do you wait before acknowledging a poor reversal outcome and doing something about it i.e. a permanent ostomy?

I'm 5 months post reversal and am having huge problems with urgency, frequency and incontinence. This is accompanied by major butt burn (usually worse towards the end of the day to the point of tears) and excessive, explosive gas. I actually believe I'd be able to hold stool in if I didn't have so much gas pushing everything out. It's pretty much constant. I'm pretty much eating a BRATTY diet and taking simethicone after meals so I have no idea what's causing it.

My circumstances are a little different in that I had my ileo reversal as part of a small bowel obstruction in January and I still had 4 months of chemo to go. So we really had to wait until chemo finished to evaluate my proper bowel function. However, if anything, the frequency has actually increased post-chemo. It ranges from diarrhoea to small formed stool, but the diarrhoea has been less since finishing chemo. My own theory is that maybe the diarrhoea was 'emptying me out' whereas now I just cluster small, soft stools all day.

A good day is 10-15 BMs, a bad day 20+ and there have been more bad than good lately. There's no pattern to it either, one day I won't go until the afternoon but will cluster into the night, the next it will wake me up at 7 and go all day. Some days it's literally a BM every 30 minutes, others I will get a break of a couple of hours. I'm incontinent probably 75% of the time. More so, when the stool is softer, or if it's later in the day and the area is just too inflamed and painful to try and hold it in.

Things I've tried:
benefiber (bulked things up but increased frequency so discontinued)
BRATTY diet (still mostly sticking to this with few variations)
loperamide (still taking 10-12 a day)
lomotil (still taking 4-6 a day)
codeine (taking 1-2 at night, when the pain gets too much)
questran (didn't help so discontinued)
simethicone (take after meals and before bed)
probiotic (take once a day)
no carbonated drinks
calmoseptine (still using)
A&D ointment (still using)
sitz baths (still using)
sigmoidoscopy - physically everything looks fine and my colon is 'inflatable' so should be able to hold stool.

Things I haven't tried:
enemas (1. for me, I'm not sure an enema is any easier than a bag so I don't think it would be a long term solution, and 2. I have no idea what to do)

My surgeon has said he usually likes people to wait 12 months before taking action but acknowledges I have severe LARS and probably won't last 12 months mentally.

Basically I'm at my wits' end. I'm largely housebound, haven't worn underwear in 5 months (depends all the way), spend most nights in pain and it's preventing me with getting on with life (work, exercise, intimacy, etc). I laugh when people say they take 1-2 immodium before going out to keep things at bay. I could eat the whole packet and it wouldn't stop a thing! Oh, and the straw that broke the camel's back? Tonight I had an accident in the bath, only 5 minutes after getting in. Emptied bath, cleaned up, refilled. 5 minutes later, another accident. No hot water left. This is my life.

Thoughts? Anything I haven't tried? Is it time to admit 'defeat'?

[cashmere]

Wow, that is quite a story. You probably don't want to hear this, but I think your surgeon is right. Since you had your reversal with 4 months of chemo left to do, I feel like you have not had the chance to experience the continued improvement some people get when having their reversal after finishing chemo. Chemo is tough. If you can handle it mentally to give it a few more months (I know, easy for me to say) I think you might start seeing small improvements, and I mean small. I was reversed after chemo and it took me about 6 to 8 months to see improvement. I am about 6 years out from reversal and still have a few bad days, but for the most part totally worth it.

Best of luck with your decision. There is no shame if you decide you can not do it. A bag will certainly give you your freedom back. Pearl

[justin case]

I did 12 rounds of chemo after reversal. I experienced pretty much the same thing. Now it has been 2 years, and things are not perfect, but I just avoid eating when it is of benefit to my daily schedule
Regards,
Michael

[Rob in PA]

I hate to say it, but yes, I think you should wait another 5 or 6 months. I was the same way and it eventually got to a manageable point. I still have accidents, but not enough to prevent me from doing most things. I've got myself in a pattern now where I get up in morning and sit on pot for an hour or two and try to get cleaned out. Then I am usually good to go the rest of day. Even if i have to go to the pot, it usually is just a small amount if I have a good morning.

Best to you. Hang in there. It does suck.

[CRguy]

Thoughts? Anything I haven't tried? Is it time to admit 'defeat'?

You may wish to check out this link with a downloadable pdf about Anterior resection syndrome
You may also wish to investigate / discuss with your doctor the items mentioned in this post, here on the forum.

Have you considered getting a BioBidet toilet seat to aid your comfort ? Discussed and referenced in This Topic

Finally you may wish to discuss some of the "reality" with our good friend NWgirl.
Belle is the poster girl and Colondar Model ! .... for deciding to go with a permanent colostomy.

Best wishes to you.
Sounds like you need some posi +++ VIBES sent your way
CRguy

[smudgesicle]

Thanks for your thoughts guys. I probably should have been clearer about my surgeon. Although he said he usually waits 12 months before taking action, in my case he is more than happy to do something sooner. If I rang him now, I'd probably be in surgery next week.

Also, I guess we all have different definitions of manageable. I think I'd prefer a couple of toilet trips a day to manage a colostomy than spending a considerable amount of time on the toilet each day. While I didn't 'love' my stoma I was totally at peace with it. Once I was on to the right product for me, I never had any leaks and dealt with skin/high output issues probably once a fortnight.

Michael, I'm glad that not eating works for you. I used this 'technique' early on to get to appts etc but for some reason it doesn't work anymore. I can not eat and still be going multiple times. Plus at only 92lbs after my last surgery, not eating isn't a popular management 'technique' amongst my healthcare team.

CRguy, thanks for the links and the vibes! I was the OP on the post about alternatives to an ostomy. My surgeon does the Interstim sacral nerve stimulation procedure and this is probably going to be my first port of call. You can do an external trial to determine if the procedure will benefit you so it's a minimally invasive way to see if it will work. If it doesn't, then I'll go to a permanent colostomy. Unfortunately it's hard to find much info about the procedure in patients with LARS. I can't seem to find many accounts of it on here. I'll definitely do a blog style post if I go ahead with it.

I've thought about the BioBidet after seeing it mentioned here. It's bloody expensive in Australia ($1000) and if I do end up with a colostomy soon I'm not sure I'll get my money's worth. I should have done it in January but as I was unprepared for my 'surprise' reversal I didn't really become aware of it until much later on. Are there any cheaper options?

[CRguy]

I was the OP on the post about alternatives to an ostomy.

I knew that

sorry, too many windows open at once and trying to get all the info into one reply !

Cheers

[smudgesicle]

Haha. I totally wasn't calling you out! I'm truly amazed by your fount of knowledge on here!

[NWgirl]

It's hard to say whether more time will or won't make a difference. I don't do a lot of "what if's" - but honestly, and I don't think I've mentioned this before, the one "what if?" I have - is if I had been able to exercise during the time I was NED, would I have still had a recurrence? When I was living with my failed reversal, I couldn't exercise at all. I couldn't walk to the end of the street to meet my kids at the bus stop because I was in so much burning pain and discomfort trying to hold my butt cheeks together to prevent an accident. Exercise was simply out of the question - completely. That's my only "what if".

I know many people who will live with varying levels of failed reversals because they are so adamantly against getting a bag. I don't judge - I get it. All I can say is that my life since my permanent colostomy is SO much better. Hind sight is always 20/20. I shouldn't have waited so long - but I did - in hopes that trying just one more thing would work. Aside from giving up dairy, which helped a little - mostly with the burning issues - I don't know what else you can do.

It comes down to what you are willing to live with and what you are willing to give up in your life due to bathroom issues. For some people, they are willing to give up a LOT and deal with a LOT - in order to not have a colostomy. Again no judgements. Every person must make the decisions that are right for themselves.

If I were in your shoes, living what you have described in this post - and knowing what I know NOW - I would insist on a permanent colostomy and I would do it now - but that's me.

[smudgesicle]

And that hits the nail on the head! I'm supposed to be enjoying being NED and I'm not. I'd say my QoL is about 2/10 most days whereas when I had my ileo I was probably 7/10 and that was while on chemo! (Albeit 5FU/Lev only). God forbid if I have a recurrence, get another illness, have an accident, or just get hit by a bus, I really, really don't want to say I spent the last however many months housebound waiting to enjoy my life.

Also another, albeit minor, thing that I thought of. Cost. In Australia, ostomy supplies are covered by Medicare. You pay a one off yearly membership ($45) and delivery for your products ($12) and that's it. I'm currently spending $200+ a month on toilet paper, wipes, adult diapers, lotions, and medications. While I'm far from a dire financial situation, I do feel somewhat resentful about it. I'd probably feel different if they were helping, but they're not.

[Makie1503]

Hi smudgesicle,
I know only too well the dilemma you're facing. I now have an ileostomy after spending 18 months post ileostomy take down, with terrible bowel function, pain and poor quality of life - similar to what you describe. I had the new ileostomy surgery 12 weeks ago. I also had a 2 week assessment of Interstim ( sacral nerve stimulation) prior to this as a last ditch attempt to see if I could avoid a bag. Whilst this did have a slight effect on my bowel function, I know that for other people it can be a much more dramatic benefit. One consideration you may want to give to this is that if you have the permanent Interstim device fitted you cannot have pelvic MRI scans. I think you can still have CT scans. My situation was a bit tricky in that even if the Interstim trial was successful my oncologist was recommending that I get a temporary bag for at least 2 years in order for them to keep a close eye on my health. I'm currently NED, but they want to wait until I'm 4 -5 years out before having anything that limits investigations or treatments.
I do wonder if you may be better to wait a little to let your body recover from the chemo. I was told that in my area they prefer to wait a year and exhaust all options first. It is absolutely awful - sitting on the loo at all hours crying with the pain. Trying to take all the advice and treatments offered but getting nowhere. I started to get really annoyed at myself, putting myself down, asking myself why can other people get this sorted and I can't?
Getting the bag back was definately the right thing for me. The quality of my life has improved drastically - from virtually housebound to never at home, and about to go on first holiday for 3 years. Yes the bag brings it's own problems but for me the benefits far outweigh the drawbacks.
Good luck with your decisions.
Makie1503

[ASTEPHENS33]

I had a regular resection and it took me almost a year to my system working again. I think the nerves down there get scrambled or something. What I found I needed to get things working regularly, is I use a half dosage of miralax everyday. It brings water into the bowel area. Its not harmful. It took me about three weeks to get the right dosage for me, but its been great. Just another suggestion.

[tammylayne]

I also agree that you need to find what works for you to get QUALITY of life back. No one needs to spend more time then needed thinking about BMs....LIVING life is what it should be all about after everything you (we) have been through.

I did not have a successful reversal, and was ready to go the route of a perm colostomy. I had many issues with my ileo, but after reading posts from many on here about how much easier a colostomy is, I was able to wrap my head around doing it. As a last attempt to make sure I tried everything I could, I tried the daily enema. I am glad I did. For ME, it is the right thing. I spend 30 minutes every morning, and I am DONE. Nothing again until the next am. I am pretty safe to eat whatever I like, although if I am having more/larger then a side salad. I have it at home for dinner...just in case. Having said that, I have only hand a handful of times when I had to go after dinner. It does happen, but 99% of the time I only go once a day, when I CHOOSE to go.

My reversal had me going anywhere from 0 -30 times a day. I also have LARS. I got stranded in washrooms away from home for hours at a time. I stopped going out at night, and it was effecting my work as well. I would say my quality of life was about a 2 or 3. Now...about a 9.

It takes me about 2 minutes to set up, 3 -5 minutes for water input, 15 minutes on the loo and another 2 -3 minutes for cleanup. Other then laying in bed for 5 minutes while the water flows in, what I do is probably no different then a "normal" person. I usually read while my body does its thing...and if its a good book, I don't mind my daily routine at all.

I do understand it is not for everyone...but if you don't try...you don't know....just a thought.

If you want more info to give it a go...feel free to PM me.

Ultimately...I wish you all the best in finding what gives you your life back!!!!!!!!!!!

[smudgesicle]

Thanks Makie1503. I did wonder about MRIs and had that noted down to ask my surgeon. I'll talk to him about it further this week but I'm not sure if it's the way to go if it's going to limit my cancer screening options.

Tammylane, I've PM'd you some enema related questions. I'm happy to give it a go even if just in the time between now and making a surgery decision. I'm not sure it's the long term solution for me, but I guess I haven't tried it, so who knows.

[Amy14760]

I'm 15 months reversal surgery and things are finally beginning to settle into pretty good state. At 12 months, the gas, skitters, and bloating were so bad that I thought I had a recurrence. I too tried everything and nothing worked. I still have quite a bit of very smelly gas but it's manageable...even though my kids will disagree I live in Germany and the house actually came with a bidet. The device had never been used before the reversal surgery, but it is now the most important appliance in the house. I actually had to look up how to use it though because it wasn't working well sitting on it backwards

Rice and bread really seem to help. Alcohol is a problem...especially beer. Anything spicy...even a little spicy...comes out spicy. Oily food comes out oily....could actually see the oil floating in the toilet. If you can slow things down, it might help. I noticed that food was coming out undigested for the first few months. I thought I had lactose, fructose, wheat intolerance, IBS, Chrones, etc. but now I think it was just the body recovering. Heck it takes infants at least a year to get onto hard food, so it may be the same idea.

Bottom line...things are much better now, but I still have a lot of gas and frequency, but definitely livable.