Please help! ileostomy reversed Dr now wants Perm Colostomy

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Jachut
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Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Jachut » Thu Mar 06, 2014 1:25 am

I had a very low rectal tumour, had the ileostomy reversal, and had no continence issues whatsoever. However, my new pouch ended up becoming totally stiff and fibrotic as well as developing a prolapse - I could not store stool there, it backed right up and gave me horrible back and side aches and I could not push it out, I had to give myself an enema to liquefy everything and cause enough irritation to make an explosion. Very unpleasant, moderately uncomfortable all the time and all but impossible to manage anywhere but at home - no going on school camp (I'm a teacher), no staying at friends houses on holidays, and hanging on in discomfort for hours and hours until I was home should I feel the urge to have a bowel movement at work.

I had a colostomy after two years of that crap - my surgeon was looking only for anterior resection syndrome and really didn't understand what I was complaining about, what happened to me and the way my pouch prolapses and scarred up was very unusual and it took a proctogram to show what was going on. But I didn't hesitate after all that time, I wanted the colostomy yesterday. I had it done last August. Best. Thing. Ever. My life is so much more normal and not ruled by my bowel habits anymore. The two worst things I deal with are uncontrolled farts (and that's sorta funny). Luckly, I'm not a gassy person, two or three times a day is about it for me until things are getting ready to actually exit. And I really don't want to be anywhere when I do have a bowel movement - its embarrassing. It can make noises and when I stand up to go to the bathroom, there is a big obvious lump on my front. As a teacher I can't leave class so if any action happens, I just have to try to conceal it until break time. I hate that. But its so much better than being stuck in a bathroom for hours trying to have a poo.

I dont irrigate. I spent the last two years stuck in a route of having to do enemas, the last thing I want with this colostomy is to spend an hour in the bathroom at night doing an irrigation routine. Most people have a bowel movement once a day and that's me - once at night usually. Most of the time my colostomy is inactive, so I really don't get the point of going through all that rubbish with irrigating when I have long periods of inactivity anyway. Often I get two days break! It is also much easier than an ileostomy - solid stools, and not constantly emptying. I just use a one piece bag - peel and stick. I shower without the bag in the morning, stick a new one on and often don't touch it till later than night when the big event happens.

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Mastan
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Location: Albuquerque, NM

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Mastan » Thu Mar 06, 2014 3:34 pm

Jachut,

I object to your comments about irrigation. For you it may be a waste of time but for a number of us this is certainly not the case. I don't know your age but age plays a big role in how fast one's bowels move. I was diagnosed at just past 50. For me my bowels move every time I eat a meal if I don't irrigate. Furthermore even with irrigation I can not go for more than 36 hrs without having output. Take my father on the other hand who just turned 80, he can't make bowel movements without taking a large dose of laxative everyday. I have a very active athletic life style and I prefer to engage in it wihout a bag of feces hanging there. Please qualify your statements because the uninitiated could be misled!

Thanks,

Mark
Dx 6/2010 rectal CA

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Mastan
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Location: Albuquerque, NM

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Mastan » Thu Mar 06, 2014 4:20 pm

Jachut,

I need to point out another generalization in your reply. You said that most people have one bowel movement a day. That is probably true for the non elderly with functioning rectums. For those of us who have had the joy of having their rectum removed a once a day bowel movement is no longer a reality. Remember that the function of the rectum is to store feces so that one does not have to make a trip to the toilet every time one eats. Please try to avoid making generalizations as it leads to the dissemination of inaccurate information. If anyone wants to learn more about the digestive tract I recommend posting questions to the UOAA website forum.

Respectfully,

Mark
Dx 6/2010 rectal CA

NWgirl
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Location: Battle Ground, Washington

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Thu Mar 06, 2014 8:05 pm

Hmmmm....nothing jachut said came across as offensive to me. I don't irrigate either simply because I'm too lazy to commit the time to it - I kind of thought she felt the same. I have friends who irrigate and say it was life changing (for the better). I have one friend who simply couldn't find ANY adhesive products that she didn't have a reaction to so she had to irrigate - it wasn't an option for her. It has worked out well. To each his own - it's a nice option for those who want to do it. I'll probably stick to being lazy and skip it.

The UOAA group is a great bunch of people who are knowledgable and supportive but to suggest we shouldn't talk about ostomys or the digestive tract here is just silly. I have referred MANY of our members to the UOAA site for more input on ostomy related issues and will continue to do so. I think the groups compliment each other nicely.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

Jachut
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Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby Jachut » Fri Mar 07, 2014 1:43 am

Mark, since you've obviously gotten quite peeved with my statement, let me requalify it. Its an opinion (that old line about opinions and assholes probably won't wash here). Its MY opinion. I had my ostomy to get away from enema routines. I hated hated hated it. It was (again in my opinion) distasteful, uncomfortable and not something I would ever want to do anywhere away from home. I don't have to worry about it any more. For me personally, if I now had to irrigate, there was no point to deciding to go for an ostomy. I'd be back at square one - spending an hour in the bathroom at a time trying to sh*t.

Whilst we're on the subject of generalising, I don't have a rectum and my problem was not being able to have a bowel movement for days at a time. If you only knew the frustration of trying to find information on THAT when all and sundry assume that because you had rectal cancer you now have continence issues and frequency issues. So nor can you generalise that we all suffer from the same woes.

I also don't want people to think that if you have a colostomy you must irrigate to manage it - because that's not true either. Colostomies can be like mine - effortless.

I'm not going to apologise for having an opinion different from yours. Surely if you want people to get the right information, you need balanced views? People are actually quite smart - they'll read the whole thread, not just my one reply.

smudgesicle
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Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby smudgesicle » Fri Mar 07, 2014 4:37 am

The OP could almost be me, except I'm the one asking for a perm. colostomy! My takedown was part of emergency surgery for a small bowel obstruction due to adhesions from the original surgery. I'm 5 weeks post-takedown and having a horrible time. BMs 15-20 times a day, ranging from diarrhoea to clustering and that's with a bland diet, 6 lopermide and 4 lomotils (you don't want to know what it's like without these things). I frequently don't make it to the toilet and the only way I can leave the house is to not eat and that doesn't even always work (plus I'm down to 90lbs so it's not a popular choice). The butt burn is excruciating and I honestly feel like this has been the hardest part of my journey so far. So Alys, I totally understand where you're coming from!

I visited my surgeon again today and he's now added Questran to the mix twice a day in a hope to reduce frequency and also the acidity that's adding to the butt burn. I also raised enemas after reading so many post-takedown threads here and at UOAA. He's not a huge fan but agrees I could try it after giving the Questran a fair go and increasing the lopermide to 9 a day.

Finally, I mentioned that I was very comfortable with the idea of a permanent colostomy (Belle, your story was a much needed find on a bad night). I didn't hate my ileostomy like some of you and I'd take a few skin issues and bad nights over this constant going despite so many drugs and a very boring diet. I said I'd rather live with a bag and be able to eat and go where I want than eat bland and need to know where the closest bathroom is forever. And funnily enough he agreed with me. He thinks it's too early to consider it just yet, as I still have 3 months of chemo to go and we all know 5FU ain't kind to the GI tract so things could still improve.

Anyway after making this all about me, like others, I'd suggest maybe giving it a bit more time before making the decision. Have you been using lopermide or lomotil or narcotics to slow you down? Is this something you could try or up? I'm completely new to Questran but I've definitely heard it mentioned on these forums before as something that has made a difference. And while I can't tell you anything about perm. colostomies, I can certainly understand wanting one with all you're going through. Good luck whatever your decision!
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

jeanette57
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Joined: Sun Mar 04, 2012 11:40 am

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby jeanette57 » Fri Mar 07, 2014 11:31 am

George is the love of my life! WHO is George??? - my stoma and my ostomy bag. :D LOVE it. Poor George got infected and the second round of surgery was to cut him from an outie to an innie. - OH MY GOD I would fight to the DEATH if anyone or anything tried to stick a tube into George. :twisted:

They didn't get all the cancer cells so I am terminal (saying that at 2 years and fighting). I am so happy to have the quality of life with the bag. I have gotten C-Deff and live with GI blues most of those 2 years. It would be hell if I had a back side. That was reality before George. The only thing from a women's point of view was the other parts fell into the void of 6 pds of flesh cut out on the back side. interesting! :o

I know it feels like your talking on a phone here sometimes but negative quotes ruin it for everyone. In the beginning I talked about Gerson Therapy and was attacked. I almost left this site, but now love it for all the support and newbie's get the wisdom of many of us on this journey. So remember each of our journeys and problems are important to us. Be kind to each other as this disease will destroy your soul if you let anger or hurt in! Rage feeds cancer! (In my opinion).
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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StupidAssCancer
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Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Tue Mar 25, 2014 6:04 pm

Well I'm Back and still struggling bigtime!
On jan 15th I had my reversal. Lived in horrid pain until march 5th the dr went in and removed 23 metal staples at my surgery site which was only one knuckle up from my bum. No wonder I was in pain! Pooping through 23 staples! Yikes! He also dilated me at the same time. He said I was narrowed from the radiation treatment.
He also repaired six ulcers at my anal opening. I have no clue what an anal ulcer is however the stinging was immediately gone. Anyhow things got better, far better other than he bruised my tail bone and that really hurt. Things were better For two weeks, and then yesterday all of the same pain came back. I'm back with internal stinging & burnjng with tons of pressure and pain and having bowel movements that are not controlled. I'm certain I have those ulcers back again as it feels the same on the outside but now on the inside I'm not sure what the pain is from?
My family all feels like it is too early for me to consider a colostomy bag. I feel like this pain is so unbearable I can't live with it for another second. And then a day goes by and I've lived with it. But there is no quality-of-life. Is it too soon do you think in your opinion? What advice do you have. I read your blogs and they're so inspirational they help me not feel like I'm giving up.
Frustrated, sad, and in pain here,
xo,
Alys
Last edited by StupidAssCancer on Tue Mar 25, 2014 6:33 pm, edited 1 time in total.
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Tue Mar 25, 2014 6:20 pm

Nothing pisses me off more than someone who hasn't lived with the pain of a reversal that doesn't work tell you that you shouldn't get a colostomy; or that it's " too soon". There is no magic answer here. Opting for a colostomy is not an easy decision whatever the circumstances. YOU decide what is best for you and when. And that's what makes it so hard. With most of our cancer journey someone (the oncologist, the surgeon, the GI doc) usually makes the decisions for us and tells us what to do. But in this situation it's your call. All I can say is I really struggled with my decision but I am so much happier with my colostomy. It's like jumping out of an airplane. You have a parachute, you know you'll be okay, it will be a good experience - you just have to jump. And if you opt not to jump - no judgment. There will be another plane coming along if you decide to try again.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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StupidAssCancer
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Facebook Username: Alys.Geertsen
Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Tue Mar 25, 2014 6:32 pm

Belle,
I was just reading through these comments and noticed the gal above my last post. Her comment, AI. She said something about having 6 pounds of her insides removed which I'm assuming was all of the guts of what makes us. Normally when she had her colostomy bag attached. It sounds like from what she stated that she had some of her women parts prolapse into that space. Is this something you have also dealt with? I guess basically what I'm trying to ask is does having a colostomy bag and having all of that removed out of you affect how you visually look, or feel sexually? Can your husband fill a difference as well?
I know this is sort of private so if you want to inbox me feel free. Thanks so much
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby NWgirl » Tue Mar 25, 2014 7:14 pm

I haven't experienced any of what Jeannette has been through. I didn't have anything removed, in fact the surgery was done laparoscopically which was awesome. My surgeon didn't know for sure if she'd have to open me up or if she could do it laparoscopically until she got in there; so I was lucky in that regard. I wanted the surgeon to remove what was connected in my bottom so I'd have a Barbie butt (I was concerned about leakage); but my surgeon said no to this. She said with scar tissue and radiated tissue there, it was best to leave it all in place. And I've never had any leakage issues that I was worried about.

I'm definitely more lumpy than before all these surgeries, but some of that is just excess weight. I think I'm one of the few cancer patients who DOESN'T lose weight while on chemo - lol!

As for intimacy, the colostomy isn't an issue. Radiation - now that's another story for another thread.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby jeanette57 » Tue Mar 25, 2014 8:08 pm

Jeanette here

I had rectal cancer, you could stick your finger (not you - doc only :shock: ) and feel the giant mass. That mass and my tailbone area were all taken out. My butt was sewn and then I was giving a Dilatator (I was just horrified while my mom and female radiation doctor were laughing so hard) OH MY GOD, I was to masturbate 3 times a week, to help keep the walls strong. Sucks being single or friend with NO benefits. One time I used it and got a terrible yeast infection, so never again. I then discovered on next MRI that the bladder and vagina were moved to fill in that void. (*&&& :evil:
So - want sex, then use it or lose it. Now at 59 the loss isn't so big, but had I been in my 30-40's hum. :P :shock:

I wonder about the pain. I keep hearing my friend's doctor tell her "when that knee hurts so bad that sucide seems a blessing, then come see me" Saw her at church this Sunday, she is sooooooooo happy and walking straight and oddly proud of her scare (yuck). So when your pain is to the point of NO MORE then see doctor. I for one LOVE MY GEORGE! George has made the last 2 years of my life a blessing. Some days like today, he was farting at the bank, but I told them George was mad at me for drinking a milk shake yesterday. Milk hates my George (ostomy bag and stoma).
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby tammylayne » Tue Mar 25, 2014 8:20 pm

I would like to second Belle's comment about this being YOUR decision, and no one is living your life, so only YOU get to decide what is right for you. Those of us with similar experiences can certainly empathize with you and offer ideas and support, but those that have not even been in the shoe store let alone walked in your shoes...well....they don't get a vote based on the fact that no matter how well intentioned their advice is, they do not know...they do not understand. Period.

Your life is miserable right now,,,that comes across very clearly in your post. What do YOU want to do??? Stick it out? Hope for a fix? Get the permanent colostomy? The people that are recommending you wait, are they all of the belief the colostomy is the worst possible thing? For so many people, it was a new beginning....a chance at a normal life. Well....as normal as those of us with CR cancer will ever be again :wink:

In pain - miserable so you can have a bm the "old fashioned way" OR no pain, content and having your bms the "new fashioned way"....hmmmmm :D

Some of us reversalites have a great outcome and carry on. Some of us don't have a good ouotcome and resort to things like the daily enema - and carry on. Some of us end up opting for a perm colostomy - and carry on. What's important here? We find what works for us,,,,and we carry on.

I wish you nothing but good thoughts that you find the result that fits you,,,stops the pain and lets you get back to LIVING your life!

Gentle hugs to you....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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StupidAssCancer
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Facebook Username: Alys.Geertsen
Location: Utah

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby StupidAssCancer » Thu Mar 27, 2014 12:20 am

Tammylane I loved your post! It helped me take off the fuzzy glasses and see clearly so to speak!
That is all I've been striving for daily is just to carry on. However it seemed everyday I was falling further behind.
I made a huge decision today in regards to my health and cancer. Those of you that are close to me know of the hell I've been going through since Jan 15th when I had my "what was suppose to be" last surgery.
Well my body is not cooperating and as a result I have been in hells trenches for the past 10 weeks. Never have I ever experienced such horrible pain. :( my cancer was to low to my rectum for the surgery to have been a success unfortunately.
The only solution to this pain is getting a permanent colostomy bag. For those of you that don't know what that is, it is basically a bag that I will change daily. It attaches to my stomach and will collect all of my waste and output. It will be under my clothing, and most of the time you would never know I had it. Last year for 9 months I had a temporary bag. I really struggled with this in the beginning. It is a huge change from "normal" and really effected my self image. Over time I adjusted to the new me and actually grew to not mind the bag. I had it reversed this past Jan. as my surgeon was hopeful I would be able to be "normal" again. So this will be round 2 however this time it will be permanent with no chance of a reversal down the road.
This is very scary for me to write as my self image has always been a huge part of what I thought was me. I've learned through this that it truly is not the clothes that make the man, and I certainly have grown through this process.
I'm sharing this with my friends, family and ya'll here for 2 reasons. 1- because I want the love and support of all those that will interact with me. I want you all to know I'll still be me. Just with something a little different than you.
2- because this is my first step of accepting the new me. And the most bravest step in conquering those self image demons that can get in your head and talk crazy talk until you loose all your confidence and your spirit breaks.
The past 10 weeks Cancer has been winning. No longer will this happen. Not on my watch. My appointment is scheduled for tomorrow to plan the surgery date.

*** If you guys have any suggestions for pre-op, please let me know! I'd love for this surgery to go as normal and easy as possible. *** :wink:
Thank you!!!
xo,
Alys
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: Please help! ileostomy reversed Dr now wants Perm Colost

Postby smudgesicle » Thu Mar 27, 2014 4:20 am

Good on you for making a decision that you're happy with! I've decided to give it 6 months at this stage, so another 4 months. Mostly because I still have 2 months of chemo left and I (and my surgeon) wants to see if that's making everything so much worse. But, like you, it's a pretty miserable existence most days (oh, the burning!). I totally understand what you mean but not thinking you can go another day. But then I'll have an ok day and think maybe it's getting better, maybe I can do this.

Do you know if it will be a laparoscopic surgery or open? That's another thing in my mind. I really don't want another open surgery if I can avoid it.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy


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