Need help living with LARS

[AnnieW]

This is my first post, I've been reading for a while.
My cancer is gone, yeah! But the constant defecating, clustering, pain remains.
I have to look into enemas, colostomy, something, I can not live like this.
I've tried fiber, no fiber, eating a few small meals, the only thing that helps me is not eating, most nights I can't sleep past 2 and it starts. I have days of horrible gas, I've discussed this with my oncologist, 2 colorectal surgeons, and they tell me, learn to live with it. Really?
I try to tell myself how very lucky I am, things will get better, but I'm starting to think this is as good as it's going to get
My tumor was very low and my rectum was removed.
Imodium was no help. I'm wondering if with a permanent colostomy, at least that would reduce some of the pain, I don't even know what is hurting inside? Why aren't things all healed by now?
I'm feeling trapped at home, if I had any knowledge of this no way would I have had this surgery, my tumor was gone after 6 weeks of radiation and chemo, wish I had taken my chances. Well, must deal with where we are now, of course it is time to get off the Percocet, don't know how I will manage without it. Sorry to be so whiney and jumping around, I just don't know where to start to help myself any more. People think, I have diarrhea, or constipated, no, I just go non stop, sometimes after 2 bites of food.
Thank you for listening, if you haven't been there, that feeling of heading into the bathroom again, toilet paper sales are up in my area, it gets so weary..oh well
How does daily enemas work out for most?
I am 58 and was so active before all this, very depressed now

[Rob in PA]

Annie, so sorry you are having such a rough time with this. There is no rule that says you can't go back and have a permanent colostomy...NW Girl (Belle) has done it. I've considered it on more than several occasions. If you feel bound to your house, that is no way to live. I personally have not tried the enema, some others on here have done it with success.

I hope others chime in, you really need some helpful insight and shouldn't have to deal with this by yourself.

Rob

[John72]

I'm not understanding why an enema as an option is such a big deal. I've read multiple postings where people are seemingly scared or grossed out by it. I've been using it every morning for a year and a half and...well it's entirely restored my life.

[lauragb]

I also do the daily enema. It has given me great quality of life. I had a very low tumor also and straight connect with entire removal of rectum. There are past threads you can search or ask questions here. Also feel free to PM me. There is relief.

Laura

[tammylayne]

Hi Annie;

I do understand and can relate to your story. I am not sure if you have searched this forum for stories on enemas, but I would really encourage you to read my posts. I was exactly where you are 3 months ago. Within 1 week - yes...1 week of starting the daily enemas I had my life back. BETTER than it has been for over 7 years. This morning I got up, did my enema, cleaned up, had a shower, dressed, makeup, toast and coffee and was out the door in 45 minutes!!!!!!!! My husband who "goes" the old fashioned way, takes longer than that!! Plus, I get to read a chapter of what ever book I am into at the moment.

What I do takes LESS time every day then when I clustered.
I am free to eat whatever I like.
I can go places and not worry about a washroom.
I have my life back.
30 minutes in the washroom (or less) = 23.5 hours NOT in the washroom!!

I challenge you, or anyone that is really struggling to give it a try. You are not committed to it for life. You are not even commmitted to it every day if you don't want to. But if you are thinking about having a permanent colostomy, why not give it a try? You have absolutley nothing to lose, but possibly everything to gain. Get yourself a red enema bag from Walmart...10 bucks and some KY jelly. Start out slow, maybe 2 cups in total...then add a cup more every day until you are up to about 6...more if you can handle it. Takes me about 7 minutes, another 7 to empty and 3 or 4 to clean everything up. Done. 20 minutes on a good day, 25 if I am half asleep.

Please feel free to PM me. I will even call you and explain what I do if that helps.

This has changed my life. I feel like my reversal is very successful, different maybe, but I am very happy!!!!!!!!! My life is now a 9/10, and 3 months ago it was about a 3 out of 10. I would never have thought I would be doing a daily enema, now, I can't imagine going back to toilet issues and clustering.

Many people have GREAT results from their reversals, and this is not to scare anyone that is facing theirs. We are all different, and yours might very well be exactly what you are hoping for. It is the smaller group of us that have issues that this is a possible solution.

So please Annie...if you want to know more, feel free to contact me. I would love to help!

[teachpdx]

Hi Annie, Sorry you are having such a hard time and in pain. My story is very similar to yours - timing and all. I have a J-pouch and I'm just beginning to get some stability. I had my reversal 3/12/13 so I'm about 2 1/2 months out. http://www.mdanderson.org/patient-and-c ... index.html This is a link to a web site that I found very helpful. You may end up doing the enema, but this was helpful to me. I kept a food diary religiously and took either psyllium or citrucel after eating. I made a huge difference. Eating 3 meals a days helps too. I found beef to be very binding. Fresh veggies and anything carbonated can be a real problem. I also have a "Biffy". It's an attachable bidet that connects to your toilets water. Very much saves the ass. You can google it. I bought it online and it saved my ass - especially when you cluster - things can get mighty tender.

Good luck and I'd be happy to answer any questions you might have. Immodium does seem to work for me. The ass pain might be helped by PT. It helped me. They can do PT through the vagina and work on the pelvic muscles. I had it before my reversal and it made a huge difference in the pain level. Kristi

[AnnieW]

Thank so much for all the replies! Wish I posted sooner, thank you for the link on bowl training.

I am going to try daily enemas, that would be a small price to pay to have my life back, be able to eat out again, go hiking, go some place that may only have 1 bath room, or heaven forbid,a porta potty!! I have been reading the posts on enemas, doesn't seem like much to put in a 1/2 hour, hour and save hours in the bathroom.

You are so right about things getting tender, that is a rather delicate area, good suggestion on the biffy.
I am very good about keeping track of what I eat, try to avoid raw, greasy, fatty stuff. I try not to eat a lot at one time

Who knew such a thing as cluster defecating existed? The things we learn in life, I could have done without knowing about this.

I had a direct hook up, no j pouch but I did not have a colorectal surgeon, wish I had been more proactive in my treatment, but who knows if things would have been any different. I have to keep telling myself just need to get over this last few bumps, my last CT scan was clear, got to be greatful.

Thank you, I will let you know how it goes

[NWgirl]

http://www.colonclub.com/2012/06/the-co ... rt-1-of-3/
http://www.colonclub.com/2012/06/the-co ... um-part-2/
http://www.colonclub.com/2012/06/the-co ... 93-part-3/

I'm so sorry you are going through this. As Rob mentioned earlier, after trying EVERYTHING, I finally took the plunge and opted for a permanent colostomy. It has been almost 2 years now and I could not be happier. I did a 3 part blog about the experience here - there are links to the 3 parts above if you care to read them. I confess I never tried the daily enema. Honestly, it grossed me out. But it does work for a lot of folks - who knows, maybe I should have given it a try. I failed so badly in every other possible way when it came to managing my bowels, I'm not losing any sleep now that this might have been my silver bullet.

My biggest hesitation about getting a colostomy was it was 'one more surgery' to go through, recover from and adjust to an ostomy all over again. But the surgery was done laproscopically - my recovery was incredibly fast and my adjustment to life with an ostomy was even quicker. I was just SO HAPPY to no longer be in pain - to be able to sleep through the night - to leave the house. All those little things that had been stolen from me for so long.

I'll be the first to say this isn't for everyone. But I'm not everyone - I'm me. And honestly, at that point I could care less what other people thought - I knew how I felt, I knew what I'd suffered with and for how long and I just wanted the pain to go away.

What does concern me about your situation is your internal pain. Not knowing where that is coming from - would a colostomy resolve those pain issues? Is it from scar tissue? From problems with digestion? Curious. That would be my hesitation at the moment - getting a handle on what is causing the pain. Because if you went to all the trouble of getting a colostomy just to have continued PAIN - well, that would totally suck. So if I were you, I'd at least try to pin down the doctors on what is causing the pain before planning anything big. And if the daily enema idea sounds like something you could try - go for it! Who knows - this may be your silver bullet.

Whatever you decide, I wish you luck and please keep us posted. So many of us suffer in silence because we're afraid to talk about what we perceive as our failures. Please know you are NOT alone!!!!!!

[AnnieW]

I loved reading your blog, thank you. You have to be there to understand, the huge packages of toilet paper, etc.
I kept a " poop log" for a few days a while back, but it got so depressing. I can't seem to find a schedule of eating, medication that works for me. I was wondering if this type of surgery works for anyone. I recently had a sigmoidoscopy and things looked ok, scar tissue and irritation, to be expected. I think if I could just stop going so much, the pressure and pain would improve.
You're so right about the dr.s telling you, take Metamucil, thats what they say! any fiber makes it worse, yea it bulks up all right, you take lots of BIG poops!
I have tried cortenema, don't mind doing enemas, I'm trying that right away
The way things are now, You have a few hours here and there, mostly it's just going and going.
You spend so much time in the bathroom you can't get anything done, it's hard if you haven't been there to understand
I have to stay positive and find a solution, even if it's ileostomy, lots of people it seems live very active full lives with it
thanks again for sharing, people on this forum have been through so much and seem so brave to me, I'm a wimp but time to reach out and find some answers

[tammylayne]

Please Annie, don't think of yourself as a wimp!!! This is not an easy journey, and there are no wimps!!

Also, I don't look upon this as failing,,,,rather just trying to find what works best for you. Belle, NWGirl is one of the strongest people on this board to me, and one of the reasons I feel this way is because she did what was right for HER, she found her way. She has her life back, and did it on her terms not based on what anyone thought she should be doing. You can't ask for more than that!

Is your solution a permanent ostomy? Maybe. A daily enema? Maybe. Another change in diet or bowel training? Maybe. There is no right or wrong, only finding a solution that feels right to you, and you alone. "Success" can be defined in so many ways, and this in particular is a very personal journey. Belle is where she needs to be based on the decision that was right for her. I have found my solution based on what is right for me. Many others that have joined in have found their best solution. Hopefully, you will also find what is best for you, and as Belle said, perhaps the best place to start is by finding out what is causing your pain. Perhaps once that is resolved other things will fall into place.

You have many people here that are willing to help and share what worked for them....I hope that gives you some comfort knowing there are things for you to try.

[Jachut]

I'm not understanding why an enema as an option is such a big deal. I've read multiple postings where people are seemingly scared or grossed out by it. I've been using it every morning for a year and a half and...well it's entirely restored my life.

Oh how i hate being reliant on enemas!!! It is no substitute for normal. I have been doing it for over a year now. My experience is this: the need to go builds up uncomfortably for hours my main sign being gas that i often cant hold in. It never consolidates into a recognizeable urge, so i need to bring it on with an enema.

After the enema ( i use a 500ml bulb syringe) and still having to push and strain to have a very noisy, messy, explosive bowel movement tht i ould never want to do anywhere but at home, i have tenesmus and cramping for a couple of hours accompanied by random urgent bolts to the toilet, some of which i sometimes cant hold in. This means i often cant leave the house for a while, i freak over the thought of having to go in public, defecating is unpkeasant, traumatic and leaves me feeling sick and if i need to go during the day say at work, i just have to suffer because i cant give myslfan enema there and cant spend an hour on the can and keep rushing out of my classroom afterwards.

I absolutely can not have a bowel movement without an enma.

Seriously, a bag was easier, more discreet, cleaner and i was in control of it. Im having a defecating proctogram in a few weeks and if anything is identified, im pretty sure i dont want to try to fix it, i would rather go back to n ostomy.

It beats ne why reversal is the gold standard of rectal cancer treatment. To me theres no real difference between disturbed bowel habits and an ostomy.

But i know not everyone feels that way and i know that the frequency, urgency and continence issues for me cleared within weeks - it does get better.