New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/10/2017 6:50 PM (GMT -7)   
I recently had colostomy surgery in August and all this is new to me. I was diagnosed with stage 3C rectal cancer August 4, 2017.

I'm on strong pain medications that are making my output too thick and I'm having a hard time emptying out the bag. I have an RX of mirałax but so far it's not working. I've been taking the prescribed amount as directed by my Dr since Friday. My output is too thick and it's not dropping, it's caking up at the top. I've tried pouring water into the bag which kind of worked but very slowly. I changed the bag a few hours ago and it was fine for a while but now it's caking up pretty bad.

Like I said I'm very new to all this and I'm not sure what to do. I don't want to keep changing the bag but if I have to I will, though that only seems to last a few hours and it starts clogging up again.

I've been trying to eat foods that should make my output less thick but the medication is contradicting it.

Anyone have any tips or advice? I've read quite a bit about what I can do but so far I'm not having much luck because of the medication.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 692
   Posted 9/10/2017 9:11 PM (GMT -7)   
Sparrow5,

Welcome to the forum. I am sorry you are having this issue. There should be others along pretty soon to let you know what they do.

Drink grape juice. Stay away from thickening foods....peanut butter....potatoes....rice...Increase your liquid intake to at least 64 ounces. Go on a low residue diet and incorporate more soups into your menu. (But it sounds like you are trying this already) If there was something you use to eat that would cause you to have more liquid stools try to incorporate that into your diet. (For me it was a tomatoe based soup broth or potatoe soup made with evaporated milk.....) If there was something that took you longer to digest and/or caused thicker stools avoid that also. Another thing that worked for me.....one can of coke or Pepsi a day...and eating well cooked zuchinni. I just dice them, cook them til they are mushy and fold them into my omelet. (Avoid the cheese though cause that stops you up)

Finally.....you can try putting baby oil in your bag...or a lubricating oil and see if that helps. It doesn't help me with the pancaking but it does make it a little easier to push down. I have just started wearing two piece ostomy bags so if I have to I can remove the bag and just clean it out from the top. Gross I know but there have been a few times I have had to do that cause it would not drop down...usually I keep a 16 ounce bottle of water and rinse from the bottom. (I know they tell you not to do that...but it is the only thing that works for me.) I change my bag every 36 hours...(if you change often use a good barrier wipe).

Good luck....

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

cmfdrama
New Member


Date Joined Jun 2017
Total Posts : 16
   Posted 9/11/2017 10:19 AM (GMT -7)   
I have an ileostomy not a colostomy so I'm not sure if this will help or not, but make sure you're drinking enough liquids during the day. That could help keep it from being too thick, especially warm/hot liquids. Wish I could be more help. I too was diagnosed with Stage 3 Rectal Cancer (now cancer free). While on my chemo (oral - Capecitabine), my output can be a little more liquid than I would like, especially while consuming more liquid than what I'm used to (increase in liquid to help flush out the toxins from chemo).

Best of luck to you.
Age: 37
Rectal Cancer - Stage T3N1M0 - Diagnosed 12/2/2016
Radiation and Chemo (Capecitabine) - mid-January to end of February 2017. Complete Pathological Response (CPR) resulted.
Surgery April 25, 2017 -Transanal Total Mesorectal Excision (taTME) with temporary Diverting Loop Ileostomy
Chemo (Capecitabine) - May 29 - Sept. 27, 2017
Ileostomy Reversal - anticipated November 2017

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/11/2017 11:04 AM (GMT -7)   
Thank you Clo and cmf for your responses.

I had to change the bag out this morning, it was so gunked up I couldn't clean it out at all. It's the medication I'm taking thats messing me up. I've pretty much tried everything, fruits, soups... Etc. I'm going to try and just drink protein drinks today along with lots of water and my 1 dose of miralax and see how I do. Not feeling too great today and I don't much feel like eating anyways so today is a good day to just drink.

I was suppose to start my first treatments of radiation and chemo today, I live south of Atlanta, and we are having a deluge of rain and my appointments were canceled because of Irma. Hopefully tomorrow will be better and I'll get my treatments in cool

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 692
   Posted 9/12/2017 5:09 PM (GMT -7)   
Were you able to start your treatment?

Chemo made me go more so I didn't have issues right after a chemo treatment.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/12/2017 6:34 PM (GMT -7)   
There are lubricating deodorants thst will not only help with the smell but help ease the movement of the output to the bottom of the bag. Though as Clo mentioned, baby oil works and is probably cheaper, too.

Have you tried a squirt bottle of water? I actually use a mixture of bag cleaner and water in a squirt bottle when the output gets too thick. As I'm sitting on the toilet, judt open the tail and with the tail facing the ceiling, allow the water to mix with the thoxk output. When it loosens it up a bit, then I empty. Note: if your output doesn't need thinning, I wouldn't do this often as it can mess with the barrier.

Best luck!
Sarah, 27 y/o
June 2017 Flap procedure for abscess
2014 Total proctocolectomy w/ perm ileo
2010 Temp ileostomy
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperami

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/12/2017 10:58 PM (GMT -7)   
Clo, I was in terrible pain from the tumor I couldn't lay still on the table to have the radiation. My Dr upped the dosage and was given an RX of Xanax. I really wanted to do the treatments but I was in too much agony. The RX had been working up until Monday. But with the higher dosage and Xanax I will be fine.

I'm so nervous about cleaning out the bag... I've done it a few times with no problems -- I didn't change out the wafer since I had just put a new one one a few days ago.

I've tried using water, it didn't work that well. I haven't eat very much, I've been drinking protein drinks, eating yogurt and a few regular meals so I've been ok. My problem is is that I love to eat. Maybe that will stop once I start radiation/chemo but now I've got a very healthy appetite. I always have. I don't look like I eat, I'm not overweight but I can put away a lot but I don't, I try not to over eat. Not easy but I'm managing.

All this is new to me, I'm learning quicker than I thought I would. Up until recently I was fairly healthy. I never was in the hospital outside of having a child. This just all caught me by surprise. I wasn't prepared for any of it. I've had 3 surgeries in a few months time, it's all pretty much a shock to my system, but all-in-all I'm doing ok. I was in mega pain before the surgeries. One was I had an abcessed that needed to be drained, and then I had the colostomy. Despite those major surgeries both have made my life a lot more manageable. I pretty much lived as a hermit before the colostomy. I still don't go out much but I'm learning to manage with the ostomy. I'm a bit insecure using it. I do have a home healthcare nurse come in once a week to help me out with it, thank goodness or I'd be a wreck!! I'm still pretty squeamish but doing better than I thought I would.

It's all the different types of ostomy bags/wafers I'm trying out. Ice lots of samples and I'm trying to figure out the best for me. The easiest to use.

I'll figure it all. Meanwhile I have a good support system -- though they nothing about any of this that's why I'm here. So far everyone had been very helpful. The pain medication is what's messing me up, making the output gunk up. Even with the miralax.

Well, tomorrow I'm going for my treatments and with the higher RX and Xanax I'll be fine.

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 625
   Posted 9/14/2017 4:22 AM (GMT -7)   
So sorry to hear about your pain and challenges associated with the tumor. I hope you're able to continue the treatment- it sounds like you've got a good team/support system. Chin up 😊
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1- iliostemy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept

Medications: 15 mg pred (tapering), Zantac, Tylenol

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/14/2017 2:51 PM (GMT -7)   
Everything is going well. I changed my entire ostomy out since is had the nurse come today. Though things had been starting to do a lot better. The output was still a bit difficult to get out but I managed, but it wasn't like it was. Thank goodness.

I went for my radiation yesterday as well as today. I have 25 treatments for 5 weeks. I start the chemo next Monday.

I'm still a bit shaky about taking off the ostomy and putting it on. But I'm getting use to it. When the colostomy nurse in the hospital before the surgery and after was showing me how to use it I was so confused, and then using the paste through me -- which I don't use since it's stays nice and snug on me. I don't sweat much so it works well without it.

I'm still in the "sampling stages" so I'm trying out these different brands and styles. Once I kinda get use to one here comes another brand... But I believe I'll do okay once I get the hang of it all. Yeah I have a good support system but none of them know (or seem to want to know how to put on the ostomy -- which is okay, I can't blame 'em, I'd probably not want to learn either LOL other than that they are top notch on everything else. Very supportive. I'd be totally lost if I didn't have them).

Everyone here seems very supportive, I appreciate all the feedback. I haven't ventured much into the rest of the forum, one if these days I'll look around, but everyone seems so nice and helpful.

Post Edited (Sparrow5) : 9/14/2017 3:58:47 PM (GMT-6)


RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 268
   Posted 9/14/2017 8:15 PM (GMT -7)   
Keep experimenting! And keep asking questions (both on here and with WOCN nurses)! The learning curve here is steep and knowledge and experience will help a lot! smile

Best wishes!
Sarah, 27 y/o
June 2017 Flap procedure for abscess
2014 Total proctocolectomy w/ perm ileo
2010 Temp ileostomy
Thyroid Cancer, Crohn's Disease, Autonomic Dysfunction, Heart Shunt, Chronic Kidney Stones

Current rx: Celexa, Remicade, Synthroid, Multivitamin, Calcium w/ D, Dilaudid, Birth Control, Zofran, Lansoprazole, Metoprolol, Benadryl, B12 Shots, Probiotic, Allergy Med, Xanax, Ambien, Loperami

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/14/2017 9:49 PM (GMT -7)   
My thing is putting the "clip" thing back on. I can be very dyslexic and I have very poor fine motor skills and just when I think I figured out how to put it back on I have a heck of a hard time the next time eyes like this morning I tried to put it on and I stood there in the restroom what seemed like forever and for the life of me I couldn't get it right. I finally got it but later on today I had the same problem. I'd take it off and try to figure out how it worked and then I'd put it back on only I'd have it backwards. I'd go lay down in bed which helps some but it still takes me a bit of time to get it right.

The ostomy I'm using now is a 2 piece and has Velcro but I still like using the clip to keep it secure, plus I have a hard time figuring out how to remove the strips on the Velcro. I still haven't, the nurse did it for me today and she did it so fast I didn't see what she was doing, I didn't even think about asking her about the Velcro until after the fact.

I'm laughing myself the way I do things, ive got to keep my sense of humor through all of this...though there are times I'm so frustrated because I know what I'm doing, or I thought I did but I tend to turn things around being dyslexic. You say go left I go right tongue

I have radiation early tomorrow then I see the surgeon that put the colostomy and port in. All my oncologists and my surgeon is wonderful. I don't really like Dr's but I got lucky with the radiation oncologist, chemo oncologist and the surgeon who will also do the surgery once the tumor is shrunk down a considerable amount. I'll have that surgery 3 months from now and then full strength chemo to make sure the tumor doesn't come back.

Yeah I'm scared about that surgery. It's going to be a very long, long surgery with 2 different surgeons. And that scares me. But then I read/hear about others who've gone through similar and note than I will, that helps a lot.

Maybe others have similar problems, being here helps.

Post Edited (Sparrow5) : 9/14/2017 11:01:05 PM (GMT-6)


Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/15/2017 2:25 PM (GMT -7)   
Here I go having problems with the ostomy and everything else with it. When ever I use Hollister I seem to have problems. With the other brand I was using I had just minor problems and was able to solve it. I had to remove everything and start again shocked I'm just glad I was home when this happened. I wasn't even aware of it until I looked at it. I noticed around the edges it was begining to bulge some but I wasn't too worried and took the ostomy off to see if it was gunked up, it wasn't too bad but I still cleaned it up, and thought I did a pretty good job until a few hours later when it opened up and the output was starting to come through -- very gross. It was pretty bad so I changedthe entire thing out. When I took it off it wasn't that bad, just where it was coming out, nothing more. The ostomy itself hadn't opened up it was where it sealed under it. Forgive me I don't remember all the names of the pieces.

None of the output was in the ostomy bag. There had been quite a bit overnight and this morning but it was easy to empty the bag. But after I ate a late lunch I had the problem. The output was yucky again, not solid like it has been and not watery either, more like the consistency of peanut butter. Like I said I love to eat and I kind of pigged out a bit last night... I didn't over eat just more than usual. I had an apple -- I sliced it up and peeled the skin off and I had a half a Swiss cheese sandwich on a white ciabatta roll and a chocolate pop tart. I did spend some time with my mom and she made me a banana smoothie with yogurt and I had a half a grilled cheese sammie on wheat.

I'm trying to be conscientious what I eat and how much. Maybe it was just a coincidence what brand I had the problems with. Dunno turn

Post Edited (Sparrow5) : 9/15/2017 3:30:25 PM (GMT-6)


cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 9/15/2017 6:07 PM (GMT -7)   
Sounds like you have a good attitude and things are improving slowly but surely!

Hollister are my least fave bags. I have an ileostomy but had several issue with Hollister. I like Coloplast and Convatec. Coloplast 2 pieces with adhesive coupling is my favorite but I have a good luck with Convatec too.

The best advice I was given in the beginning was keep it simple. I got overwhelmed at first with all the product options. But for example you discovered you don't need the paste so ditched it. I think it's best to keep products to exactly what you need and nothing extra.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/15/2017 7:26 PM (GMT -7)   
I'm trying to have a good attitude. This is going to be the rest of my life. Before the colostomy my life was literally a living hell. I was miserable. I was afraid to go anywhere. When I did I couldn't wait to get home. While this is all new to me and quite confusing at times its not really that bad. Compared to the way my life was before the colostomy its really great.

I was living alone and I was very, very depressed, I moved back to Georgia with my family and things turned around 110%. My family has been more than supportive. I have my bad days where Im in a daze over my diagnosis, I'll wakeup at 3am and it will hit me like a ton of bricks and I have myself a good cry and ask God, why me... I get pretty low and I don't get any of it. I feel like I'm suffocating, I can't breath. Like I'm drowning. Then I wakeup the next day and go have my treatments and I KNOW I'm going to beat this thing.

My family is very supportive, I don't know what would've happened if I didn't have them... The thing is I pretty much pushed my family out of my life 5 years ago. But since I got sick I let them back in and they welcomed me back. Without them I don't think I'd have this attitude. I'm more than grateful and blessed.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/16/2017 11:06 AM (GMT -7)   
Wokeup around 1:30am and boy am I glad that I did!! The wafer was starting to come off and yes it was sealed on me very well. It was awful... I had to remove the entire wafer. It was starting to bulge out. None of the output was in the bag. The entire ordeal is too gross to even talk about. It is very gross but its not unlike when your kids were babies, a diaper that leaks, or when you have a sick child, as a mom -- or dad, you don't panic you jjust do what you gotta do regardless of it all. Its gross but you love your kid(s) so you don't think twice. Its the same with the whole ostomy/wafer thing, its part of your life, who you've become, yeah its a bit squeamish at first, not so much the output as much as looking at the stoma... I'm starting not to think twice about it and just do it.

So far today I haven't had any problems though I only ate about 45 mins ago and took the miralax.

I thought maybe I didn't put the new one on properly but I had the same problems when the nurse did it. Again it I was using Hollister. I haven't had any problems with any of the other brands I've using. So far I am NOT liking Hollister at all shakehead

Im not feeling too good today, very tired and feeling a bit weak and dizzy so I won't be venturing out today like I wanted to. Had a busy week and I need some downtime.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Post Edited (Sparrow5) : 9/16/2017 12:16:10 PM (GMT-6)


Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/19/2017 8:06 AM (GMT -7)   
Its definitely the Hollister brand. I used the last sample I had of the wafer and ostomy bag and it did the same thing as the others did. I switched to the Convatec brand and they worked perfectly. Had no problems at all. No pancaking, no gunking up and the sides opening up like Hollister had been doing. I'd get depressed since I'd put a new wafer on and ostomy bag and either the same day or the next morning I'd have to change the entire thing out. I hated wasting both the new wafer and bag. Then this morning I woke up and had no problem with the Convatec at all. yeah no more wasted products, no more waste period.

I'm a happy camper smurf yeah
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4783
   Posted 9/19/2017 8:32 AM (GMT -7)   
How long will you have this ostomy for? Is it permanent? You may want to keep trying other products; people really like the Coloplast products. I really liked their accessories. Their brava strips were amazing, the only downside was that they were really hard to get off but they never leaked.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/19/2017 9:56 AM (GMT -7)   
Oh sheesh I had a long response but I don't know what happened. Oh well it wasn't meant for me to post it.

I've never tried Coloplast but I'll look int them. This is a temp colostomy to be made permanent after my last surgery in 3 months. So this is something I'll be living with the rest if my life. Compared to the way I was living my life before the colostomy it's something I'm looking forward to.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/19/2017 9:17 PM (GMT -7)   
I know this question I'm about to ask is not about ostomies or colostomys but I could not find anything pertaining to colorectal cancer or a general cancer forum/chat so I thought I'd ask here and maybe someone can direct me to the right place.

I had a CADD chemo pump put in yesterday and I really cannot find much on showering with it -- I know I cannot get the IV wet and the pump itsslf, most suggest taking a bath -- I know with a colostomy bath's ate not recommend plus we don't have a tub!! We have 2 gorgeous shower stalls but no bath tubs!!

The oncologist nurse suggested using saran wrap over thevIV and I read how some would leave their pump outside of the shower. I can do that but I may have a bit of difficult time with Saran wrap. Especially removing it on my own without damaging the IV. I'm sure many have done this but anyone have sby suggestions? Some I read had waterproof bandages on their IV maybe I can ask them to put a few on me so I can shower with no help. I'm not married, I live with my bro and his wife and I can't ask my sis in law for help every time I want to shower.

I'd have thought that they'd have come up with something to cover the IV and pump. The pump its self is water resistant but not waterproof.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 692
   Posted 9/20/2017 6:29 PM (GMT -7)   
Sparrow,

I have a Hard power port.....so it may be different... I don't have any of it exposed. They access it with a needle every 4 weeks. My friend had a port with the iv left outside the body. We both have used these big water proof bandages in the shower. The hospital gave them to us.... I only use them once every 4 weeks.... My friend had breast cancer and since her iv was left on and out she used them every other day. She still gets them thru the nurse at the hospital....at the infusion place...and with her surgeons nurse....but she ordered some from one of the major suppliers....Edgepark or Bryan? Her health insurance did help pay for them...and she had to have the order approved by her doctor.

Hang in there!!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/21/2017 9:23 PM (GMT -7)   
Thanks CLO!! Big help!! I did wash my hair in the bathroom sink, I have very short hair so it was easy, I just slid the Cadd pouch behind me and covered my shoulders and the area where the port is with a big beach towel. I give myself a decent sponge bath daily as well. But I shall look into those waterproof bandages, the port and area is covered with a large waterproof bandage now.

I told my mom about the bandages and I think she bought me some smilewinkgrin

I was nervous about the Cadd pump at first but now I'm pk with it. I do check to make sure I'm still hooked up though its suppose to set an alarm off if something happens, I sigh a sigh of relief when I hear that "chirping" "whirring" sound which let's me know everything is working yeah

Had another bad blowout twice today. One was with my fave Covetec and the other was Hollister. Its pancaking up again. I stopped taking the miralax because i was eating a lot of fruit and fresh vegetables. I just got to be careful not to eat too many fruits or vegetables -- that's why I had a huge mess on my hands tongue I'm low on supplies, I ordered some Monday, when i wasnt too low, I believe and they still didn't come. I have no Hollister wafers but a few ostomy bags, and I have a few Convatec wafers and maybe a couple bags, I used Convatec wafervwith the Hollister bag, they worked perfectly together. Luckily I several different sized wafers and ostomy bags with different size openings.

I need to be careful what I eat until I get my supplies. I need to anyways since its pancaking up too much again. Like I've said I love to eat, especially fresh fruits, I peel the skin off the apples and pears... But I do like junk food too at times, I ate chips the last few days. I've got to be careful with chips... One of my weaknesses.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 10/25/2017 5:17 PM (GMT -7)   
Haven’t written in a bit... been feeling pretty bad. I just finished radiation and chemo but boy did chemo kill me. I’m on day 2 coming off chemo and I still feel awful. I know it’ll take some time to get out of my body.

I’ve had an awful time with my ostomy and chemo. Lots of problems. Miserable problems. The chemo has given me bad diarrhea and I’m taking Imodium as per my Dr but it doesn’t really help. Pretty much anything I eat hurts my stomach bad, I can be up half the night in agony and then some nights my ostomy has leaked/opened up due to too much output at once. It’s happened 3-4 times. It’s not hard to clean up it’s getting over not to make a mess from the leaking ostomy. It’s miserable at 2-3 in the morning. That’s usually when it happens. It did early this morning too.

There isn’t a lot whole lot I can do to stop it, not eat is the only thing and in the shape I’m in I’ll get sicker... there are days I barely eat and I get very weak and dizzy. Not fun at all. I hate what the chemo has done to my body but that and the radiation have shrunk the tumor down a considerable amount so it’s done it’s job.

Now I’m just suffering the after effects of the chemo and they are bad.

I’m using Covatec Ostomy with a filter, not sure if it works, sometimes it smells bad, it’s not leaking from anywhere, I check. The smell will last a while then go away. But sometimes it stays a while, it’s very embarrassing. I’m wondering if it’s the filter, is the smell coming from the filter? It happens even after I empty out the bag and there may be a little output not enough to empty. It’s pretty bad. I’m afraid to go places and be with people which is impossible to do but I do try to avoid people as much as I can because of it.

I’ve reading on another thread where some had leakage from the filter and they taped it or used somethings to cover it up. Sometimes the ostomy will balloon up a lot even without much in it, I know this is TMI but this is a fact of life for those with a colostomy... it’s not that I’m lazy and don’t want to get the air out of the bag, I was doing that up until I started to feel really, really miserable. Then I’d put it off until I had to check.

Not only did the chemo get but so did radiation, I have some pretty major burns and they hurt bad!! It’s hard to get out of bed sometimes. I have a good burn cream that works well but it’ll take some time to heal.

I have to go to the DMV tomorrow to change over my license from another state and I really don’t want to be smelling.

It’s hard enough dealing with an ostomy and now I have all this too. And on top of that my stomach is starting to hurt bad right now and I’m sure it’ll be another sleepless night.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Mar68
New Member


Date Joined Oct 2017
Total Posts : 10
   Posted 10/27/2017 12:19 AM (GMT -7)   
Hey sorry you are dealing with all this. My colostomy was Sept 20. Im very frustrated as my Convatec supplies are backordered until sometime in November.
Pancaking started with me too recently but only when I use the adhesive paste. I created a vacuum and it all gunked up around the ring. Its hard to deal with i know. I use my finger and go around the ring with my finger through the bag not into the poop. Lol.
I guess now im stuck with Hollister appliances due to the long backorder of Convatec which I love.
Hope it works out for you. I hope your supplies come in soon. Good luck

Sparrow5
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 11/3/2017 3:36 PM (GMT -7)   
I’m still having the pancaking and it’s awful. I’ve been changing both the wafer and ostomy sometimes every day, it’s that bad. And I end up avoiding people if I have to.

It depresses me. I’ve tried so many things to rectify this but nothing works. I am trying to eat healthy to regain my strength back and I want to be as healthy as I possibly can going into my next treatment of chemo. But the healthier I eat the more problems I have. I take an Imodium and it messes me up the other way.

I don’t know why it’s pancaking so much but it is. And I don’t know why it smells — maybe it’s the filter in the ostomy, I have these stickers that came with them and I’m trying them, hopefully it’ll solve that problem.

It’s not like I’m doing this on purpose, I’m a very clean person, I shower daily, I change the ostomy and wafer probably more than I should but with the pancaking I have. I end being a recluse, afraid to socialize. But I can’t always do that plus it’s not good to be that way. I cannot help what’s going on, I have no control over that part of my body anymore, plus the medications I’m on mess me up as well.

I’m just feeling very down. Depressed. I want to be part of things but I’m afraid to... sometimes I’m fine but most times lately iv has awful issues.
It isn't about karma. It is about love. Love is beyond karma. Karma can be very easily neutralized with Love.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1964
   Posted 11/4/2017 9:09 AM (GMT -7)   
Hey Sparrow, I cant offer any advice as I don't know anything about ostomy really. Maybe if you start a new thread about these awful issues someone will be kind enough to help. Best regards.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Wednesday, November 22, 2017 12:41 AM (GMT -7)
There are a total of 2,896,631 posts in 317,923 threads.
View Active Threads


Who's Online
This forum has 157509 registered members. Please welcome our newest member, serialmom63.
237 Guest(s), 1 Registered Member(s) are currently online.  Details
ChickenArise


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.