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Posted 7/3/2008 11:17 AM (GMT 0)
Hello,

I am new to all this and am trying to adjust.  How do you cope with the gas and diarrhea?  I must burp my bag at least 10 times or more a day.  And I empty at least 4-6 times.  I had colon cancer and had a colostomy.  Right now I am also going thru chemo. Sometimes it is really the pits!

Sincerely,

Kitkath

Posted 7/3/2008 12:01 PM (GMT 0)
Hi Kitkath - welcome!

I too had cancer and a colostomy. That was over a year ago. The gas will subside quite a bit as you recover. I also have Crohn's so I still have diarrhea and empty several times a day (6 - 10) so I take codiene for it. A lot of people get relief from imodium which is over the counter. The chemo can also contribute to it. Yes, it is the pits and I wish you the best of luck during it. How long do you have to go through the chemo?
Posted 7/3/2008 1:59 PM (GMT 0)

Hi BadBagGirl,

I have to have chemo for 7 more treatmetns...once every 2 weeks.  So by October I will be thru.  I am trying different appliances, and hae found, so far, that i like the 2 piece the best, as you can "burp" it. How do I access my profile to tell a little about me?  I don't know how to do that...or leave my email address so that people can email me? I have malabsorption, so diarrhea is a biggy for me.  I take tincture of opium, get sandostatin shots once a month, and take panocaps with each meal.  But it doesn't seem to be working most of the time. :o(  My biggest concern is my weight. which is really low.  I need to gain about 15 pounds.  I am trying everything short of TPN. 

Posted 7/3/2008 3:03 PM (GMT 0)
KitKath .... just go up to 'Control Panel' on the upper left hand side to create and edit your profile.

I like the 2 piece too so I can burp it but the ring was shoving the wafer and cutting my stoma so I do the one piece now. It's hard to keep your weight up during chemo. Sounds like you are doing a lot to slow down things but I found apples (peeled or applesauce) and peanut butter help quite a bit. And are you drinking Ensure or Boost or something like that?
Posted 7/3/2008 5:55 PM (GMT 0)
BadBagGirl,
I hadn't thought of the applesaucee, but rice I am eating, and peanut butter on bread. Thank you! And I am drinking (tho I really hate it!) Ensure. Thank you for the info on how to change or edit my profile! I just did! Bless you!!!! Right now it is very hard adjusting to the stoma....it spurts and makes noises...sigh...guess that is all just part of it. It reminds me a a volcanoe! hahaha
Thank you for your help!;o)
Posted 7/3/2008 6:04 PM (GMT 0)
I have had a hard time adjusting too. I still get down about it sometimes and it does start spouting off at the worst times (great date noises). I miss my body, if that sounds shallow. I was a dancer, and while it wasn't perfect, I was always confident about it.

I'll have to check your profile! Glad you were able to to it.
Posted 7/4/2008 2:55 PM (GMT 0)
Good Morning BadBagGirl,
How long have you hae your colostomy? I guess we should both be thankful that we are alive. I hear you on the noises...it is so embarrassing! But...my nurses said that when it gets real noisy, just look around and pretend it isn't me....hehehe....and say to someone, can't you at least excuse yourself?!hehehe....I haven't done that and I probably won't, but it is funny. Did you have chemo and did you lose your hair? I am sorry that you were a dancer and this happened! darn! Supposedly we can still do everything we once did?
Happy 4th of July to you!
Sincerely,
Kathleen KitKath
Posted 7/4/2008 3:38 PM (GMT 0)
for the noise, if you don't want to double up with a tube top under your clothes or something you can take some squares of cloth what i did was cut washcloths into fours and then put two or three of them, depending on the thickness of the cloth, right over my stoma, under my clothes, it muffles the sound compeletly and doesnt' show under your clothes if you wear a longer shirt.
Posted 7/4/2008 3:42 PM (GMT 0)
A couple of my hints for "slowing" things down are bananas, applesauce, and of course potatoes, rice, etc. You may want to watch your caffeine and sugar intake as both cause me a more liquid output, as does foods high in fat. I am always battling my weight - recently dropped the few pounds I had gained that got me pretty close to a decent weight. When you are trying to gain weight, you tend you increase your calorie intake by increasing the fat content -- it's a big catch 22. Most of the liquid nutritional drinks have a high fat content. One thing I find is that if I can get the liquid output fairly under control in the mornings first thing, I tend to have a better day all day long. Also you can get immodium by RX - so if you have insurance, have your dr. write it for you. I get it by RX all the time and have for many years. Hope this helps.

Good luck on your chemo and welcome to HW.com. This site has a lot of great people on it.
Posted 7/4/2008 4:41 PM (GMT 0)
KitKath,

Ive had my colostomy since April of 2007. At first they weren't going to do the surgery and 'just' do the radiation and chemo. I made it through the radiation but I am very small to begin with, plus have Crohn's so I was already going the the bathroom about 10 to 12 times a day. When I started the chemo I got down to 72 so they discontinued it and went right to surgery. They didn't think I would make it through the chemo. But yes, I AM alive now cancer free (knock on wood). Yes, they say you can do ANYTHING you did before but that's not entirely true. I CAN dance, but can't wear leotards without it bulging out and I can't partner like I could. Nor can I strain my abs because of the hernia. So. Oh well. I wasn't a professional and I am getting old anyway! I'll be 50 this year! :-)

I don't remember if it was someone in here that told this story, but most of my friends know about the ostomy so when it really makes noise around them I just say "Thar she blows" and it's good for a laugh.

I wear 'Assets' panties from Target over the bag. They are like 'Spanx" and they kind of muffle the noise too.

Are you losing your hair? They told me I probably wouldn't with the type of chemo they use for rectal cancer. Maybe just thin it. But the radiation already did thin my hair. You MUST keep in touch with us during this. Not an easy ordeal to go through. I'm thinking about you.

And Happy Fourth of July everyone! I am having a friend over for BBQ, fireworks and a couple of Rum drinks!
Posted 7/5/2008 2:26 AM (GMT 0)

Hi BadBagGirl and Peggy!

It is so good to meet people that have the same problems!  Bless you Both!!!  I just had a birthday....June 21...I turned 62.  I had OVARIAN CANCER when I was 29.  I went thru 6 weeks of radiation treatment, followed by 18 months of chemotherapy.  The radiation treatments did permanent damage to my whole digestive tract, burning and scarring my small and large intestine.  Consequently I had chronic diarrhea, and as I got older it got worse;  so much so that I had to quit my job....I mean...where can you work sitting on a toilet?! Well My gastorenterologist told me that I was a very good candidate for colon...4 years after my last colonoscopy, I had another colonoscopy and VOILA!  Colon cancer...sigh.  Well I am very fortunate because when I had Ovarian Cancer, the docs told me then that I would probably only live maybe 6 months!  That was almost 33 years ago! Like you BadBagGirl, I am very small....I am trying so hard to gain weight!  My one downfall is coffee....but I have cut way down on it....Immodium doesn't work for me.  Lomotil used to, but even it doesn't anymore.  So the only thing that sometimes works is Tincture of Opium which slows down the gut.  I will try the foods you suggested  THANK YOU!  BLESS BOTH OF  YOU LADIES!

Sincerely,

Kathy (kitkath) 

Posted 7/5/2008 2:53 AM (GMT 0)

Kitkath,

Try switching to decaf, and I bet the immodium may help along with 1/2 banana before  breakfast and the other 1/2 with  or after breakfast.   That helped when I decided to try to eliminate some of the immodium I was taking -- read about the caffeine trick somewhere and decided to try it.  Whoah-La!  It worked.  Coffee kills the appetite too for me -- but I love my morning decaf latte --- at least I get my calcium!!!

Does the tincture of Opium work for you w/o making you groggy or goofy?  Just curious...

Good luck.

Posted 7/5/2008 3:03 AM (GMT 0)
Hi Peggy,

Yes the tincture of opium works for me.  I have been taking it for almost 10 years now.  It is the only thing that does work!  It does't make me goofy or high or anything.  Guess because I have been taking it for so long?  I am also getting a shot of SANDOSTATIN once a moth, which is supposed to help with the diarrhea.  And...I take "panocaps" which are digestive enzymes. 

Sugar is one of my biggest stapels....sigh...so ok, I can live without it.  I eat a lot of potatoes and rice....I think right now the chemo is really affecting me, plus I am on penicillen because I had a tooth pulled yesterday ....it was infected.Hopefully by next week I will have everything under control?!

Thank you Peggy

Posted 7/5/2008 3:09 AM (GMT 0)

Has the numbness worn off of your tooth yet?  Does it hurt?  Hope it feels better than it did before it was pulled.

Posted 7/5/2008 3:26 AM (GMT 0)
oh yes the missing tooth does not hurt anymore and my jaw is not swollen anymore either!  The chemo did it.  sigh....when I was on chemo for the Ovarian Cancer, all 4 of my wisdom teeth came in and I had to have them all pulled.....sigh....hehehe.  I don't have too many teeth left to pull! The penicillen can cause diarrhea too but my oncologist wants me to take it for at least 3 days, so I am!  What is the difference between a colostomy and a illostomy?  So tell me, where do you get your decaf latte at?  do you make it?  I love the ice coffees....they are so yummy...and I guess so bad for me now.  darn!  Sure have to give up a lot of stuff, don't we?!  I mean, food wise....and I guess other things too...but hey...we are here and we are still alive!  yes!  :yeah.gif','yeah','yeah');" height=25 alt=yeah src="https://www.healingwell.com/community/emoticons/yeah:

Posted 7/5/2008 3:50 AM (GMT 0)

Isn't it funny that some of the drugs that they give us to resolve D actually gives us D?!!  Hmmmm...  Flagyl is one that I've taken recently for a bacterial/viral thing in my intestine and it always kills my gut.  All the memories of taking it when my CD was active came flooding back!!  So, I have to take 1/2 a pill every 2 hrs with food each time rather than 1 pill every 4 hrs.  But it works for me.

I make my own decaf lattes every morning, before I leave for work.  Cheaper than Starbucks by a long shot. 

Yeah, we may have to give up a lot, but we are here and we feel FINE!!!  We can eat and not be in pain and misery.  A lot should be said about that one.  I gave up a lot of foods -- some people sure don't have too.  But I have battled stomach ulcers for years and decided to change my diet and they finally healed and my D slowed down quite a bit too.  I switched to decaf coffee, quit drink sodas, eliminated most all really spicey food and eased up on sugar intake.  I don't like diet drinks or sugar free stuff, so it was really a major accomplishment for me!! 

With a colostomy, the stoma is made from the colon.  With the colon (colostomy), there is a better chance of absorption of fluids and vitamins and minerals (and calories), than with ileostomy.

With an ileostomy, the stoma is made from the small intestine.  It is harder to absorb all of the above and it usually is more active. 

 

Posted 7/5/2008 4:06 AM (GMT 0)

oh Peggy!

So you have an illiostomy....And you work too!  WOW!  What kind of work do you do?  Ummmmmm  when the doc removed most of my colon, he removed a large portion of my small intestine too.  It was severly damaged, paralyzed, scarred, burned....etc!  Bad, in other words.  So he took it out too.  I suppose down the road I could maybe have this colostomy reversed?  But why would I want too?  I mean, now I do have some freedom and a life....where before I couldn't go anywhere and had to stay home near the bathroom.  Besides my surgeon said that I now have "short gut" syndrome....so without the colostomy, I would have constant diarrhea.

This may sound crazy or forward, but it would be so cool if amybe a bunch of us could maybe meet?  and maybe have lunch?  That is presuming that we all live fairly close to one another.  Hahaha...probably we are all over the United States or World!  My doc told me that there are at least 1,000,000

people with ostomies in the United States.   That is impressive!

My good ness you are amazing!  Working, and having had this for 24 years!  GOOD FOR YOU!!!

Posted 7/5/2008 4:38 AM (GMT 0)

Kitkath,

Shaz that posts on this forum has me beat as do a few others on here. 

Yeh, I work only part time now but not due to the ileostomy in a clerical position.  I am fortunate enough to be able to work my own schedule which is early mornings, like 7:00 - noonish, sometimes 1 or 2 p.m.   I usually only work Mon thru Thur now then go out to the site where we are building our home.  I just got done putting over 50 outlets in, 28 (7 sets of doubles) in our detached garage; plus the rest in our basement and living level.  Today we installed our smoke detectors and part of the security system.  Almost time to start laying some tile and wood floors.  Never a free moment --- I did sleep in and be lazy earlier today and this evening. 

If you still have some of your colon and rectum, maybe your dr. is thinking about possible reconnection down the road.  It would be a hard decision if you are pain free and feeling well.  Personally, I don't have that option.  My ileo is permanent.   But it would be a no-brainer decision for me since my CD constantly returned after some resections I had done prior to the removal of all of my colon.

Sure, I would vote for a get-together but I know most of our folks that are posting are from Austrailia, OH, FL, NY, NC, MN, etc.  Kind of all over the place.  I would love to get together and meet everyone.

Posted 7/5/2008 5:19 AM (GMT 0)
yes it would be so neat to meet all these really cool people that have lived with! My hat is off to all of them! I live in California.And although I do have my rectum , I will not get reconnected. For the first time in 15 years I can go with my husband for a drive and we don't have to panic and be on the lookout for a bathroom! you are building your home? Good for you! Do you have any children? Mine are all grow; their ages are Tomme, the baby(36), Michelle 42, and Laura 40. Laura is the mother of our 3 grandsons. Thank you Peggy for talking to me and for all the helpful advice! And Thank you to BadBagGirl too! I haven't named my stoma but if I do it is going to be Odiferous Spouting Volcano!
because it never stops!hehehe...
I think it is absolutely wonderful tht so many people have ostomies are are still able to work and maintain a normal life! YES! I need to know if acidophilus would help with the oldor and the diarrhea??? I am eating in small amounts, yogurt. but I am thinking that maybe the darn penicillin is killing the good guys in me? Maybe more is better????
Posted 7/5/2008 7:50 AM (GMT 0)
I can't say much about yogurt, tho I try to eat at least 1/day when I am on anykind of antibiotic.  A lot of folks here take a Probiotic Supplement (opposite of Antibiotic) that helps the enzymes in your gut since our digestive tracts are a little compromised.

I vote for Odie as your stoma name - for (Odiferous Spouting Volcano) but you'd have to include the whole name for it to be funny!

california - I think there are others on here from there too. 

Posted 7/5/2008 12:21 PM (GMT 0)
Good Morning Everyone! I hope you all had a wonderful 4th of July Yesterday! Peggy, my stoma is now called "ODIE", thank you!:o) I need to go to the health food store today and get some more probiotics! Thank you again! I hope you all have a wonderful weekend!
Sincerely,
Kitkath
Posted 7/5/2008 2:57 PM (GMT 0)
KitKath, you can at least see pictures of some of this group at:

http://photobucket.com/
User: Crohnsdisease
Password: 6mp3asa
Posted 7/6/2008 1:06 PM (GMT 0)
These pictures are all so neat BadBag Girl! Thank you! Most everyone looks happy! And Everyone looks like a really good bunch of people! Thank you so much for answering my posts and for befriending me! You and Peggy! Tuesday is my next chemo treatment. and I have lost more weight. DArnit! So I m eating rice, peanut putter, etc to try to put back on some pounds. Did you lose you hair when you were on chemo? How many treatments did you have to have? The mixture they are giving me is 3 in one. 2 they infuse in me at the clinic for 2 hours, the third one they send me home with and it infuses into me over 46 hours. It is called Oxiplatin.I have 6 more treatments After This Tuesday's. I will be glad to get the pick line out of my arm!
Sincerely,
Kitkath
Posted 7/6/2008 3:38 PM (GMT 0)
I only had 3 treatments before they stopped, and no, I didn't lose my hair. They said I probably wouldn't if I did the whole course either. My brother in law had the same stuff and he didn't lose his (he unfortunately didn't win the battle ... he was at stage 4 when they found it). Did you lose yours? Ovarian cancer and now this??????????? That's a HUGE double whammy! I hated that pick line...
Posted 7/6/2008 4:46 PM (GMT 0)
Hi BadBag Girl,
I am so sorry your brothe-in-law lost his battle. Poor guy! CANCER HURTS! No I did not lose my hair when I was on it for the Ovarian. Course I was just 29 years olds then. Now I am 62, and my hair is thinning out anywas cuz I am as old as Dirt(that's what my kids tell me :o)I was STAGE 4 With the OVARIAN CANCER! With this new one, supposedly stage one. Why did you stop at 3 treatments? Did you get too sick from the treatments? My worry is that I will get too thin. I already look like a war victim .... or that I have anorexia.!haha
Forgive me if my sense of humor is bizare to you...I just sometimes find some things funny and have to laugh.
Speaking of pick lines...did yours leak clear liquid? It doesn't leak all the time, but when it does leak, it is clear stuff like water? WEIRD!
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