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Want A Colostomy, Need Advice

Hello everyone.

I’m trying to cut an extremly long 7 year story short so if you need to ask any questions feel free.

Anyway, I have had progressively worse IBS C/D for around abouts 8 years now and I have spent almost the entire of those 8 years trying to find ways to stop it from getting in the way of me having a normal life but so far nothing has worked.

Now when I say I have been trying for 8 years I mean with GP’s, Gastroentorologists and IBS sufferers through forums on the internet to no avail and my treatments have ranged from colestyramine, lactulose, down to peppermint, CBT and bio-feedback. After all this time, the team leader of the Gastro team in my Local hospital (Amersham/Wycombe) has said explicitly that she can thing of no other treatments for me, however when I mentioned that other IBS sufferers who hadn’t responded to treatment had gotten a Colostomy performed and it improved their lives greatly her comments were "No surgeon in the UK will perform a Colostomy for IBS" "Any surgeon who does is un-ethical" and finally "It will make your life worse".

Now after doing a little research on the internet about IBS sufferers who have had Ostomies I managed to find a good few who were in the position I am currently in and who managed to have the surgery performed, and have never regretted it done, but firstly I am wondering if any here on these forums have had their Ostomies because of IBS. Why they had it performed, and how their lives have been since they had it performed, and also if I have your permission to show my Gastroentorologist your comments.

The reason why I am doing this is because apart from the aforementioned comments the team leader made, she was also very rude, accused me of being close minded to non-surgical procedures even though I said a few times I am willing to try anything to avoid surgery but surgery "should" be an option if all else fails and virtually laughed at me when I mentioned a Colostomy to begin with. This led me to make a complaint about the way I was treated to the local NHS Trust and they have since came back to me basically white washing everything she said with a half arsed apology thrown in somewhere at the end.

My IBS has ruled my life for 8 years, I have lost 3 jobs 3 long term partners and missed out on a lot of happy memories because of it. The only way I can even make sure to actually be able to make any pre-determined appointments like hospital appointments is if I take Loperamide the night before and then in the morning which of course leads me to have an even more severe attack a day or two later. I’ve done a lot of research on living with a stoma and while I will never know exactly what it is like and what a person goes through living with a stoma I do feel that this is the final option for me to lead a normal life.

Now I am stuck in a situation where I can either carry on fighting the system through email by complaining to the regional complaints people (can’t remember their exact name right now) or by travelling a long distance to garner a second opinion which itself is less simple than it sounds. When someone has an appointment the most they worry about is getting there on time. For me an appointment means a whole week of anxiety that the Loperamide may not work this time or I may have an attack before I leave and not have enough time for it to subside and miss my appointment. I told the Gastro this but she still thought her only option was to send me to the centre of London to see an IBS researcher, a journey she knows I can’t take.

This has been a whole big mess, she tells me there is nothing she can do for me but a Colostomy isn’t an option. Even in the NICE guidelines on IBS it states that in a small proportion of IBS sufferers 2%< that don’t respond to treatment and that surgery is an option but it is her "personal" opinion that living with a stoma is a nightmare only inflicted on those that "must" have it.

I would love to hear everyone’s thoughts on this whole situation and I am a very open question so feel free to ask any questions.

Ricky.

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Want A Colostomy, Need Advice

HAVE YOU EVER USED YOUR COLOSTOMY AS A WEAPON?

A FORMER NEIGHBOR CALLED THE FIRE DEPT. ON ME BECAUSE SHE SMELLED INCENSE COMING FROM MY APARTMENT

WHEN THE FIRE DEPT GUYS FOUND OUT THEY HAD BEEN CALLED FOR SOMETHING SOOO STUPID THEY GAVE HER A TICKET AND KNOCKED ON MY DOOR TO LET ME KNOW AND ASKED ME IF I WANTED TO PRESS CHARGES FOR HARRASSMENT. I SAID NO AND THEY LEFT.

AFTER THEY LEFT, I WENT TO THIS WOMAN’S DOOR, LET THE AIR OUT OF MY COLOSTOMY BAG, KNOCKED ON HER DOOR AND WHEN SHE ANSWERED I TOLD HER "NOW YOU HAVE A SMELL TO *ITCH ABOUT".  Twisted Evil

I KNOW I SHOULDN’T HAVE DONE IT, BUT IT WORKED. SHE NEVER BOTHERED ME AGAIN Very Happy

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HAVE YOU EVER USED YOUR COLOSTOMY AS A WEAPON?

New Colostomy – How Did You Cope Initially?

I underwent an emergent colostomy in April. Depression, anxiety, fear…everyday I wake up and my first thought is “was that a nightmare?”  Of course the answer is always the same “no.” Every pain frightens me….I am also dealing with a slow healing incisional infection. I need to shower twice a day, then do dressing changes three times a day. And I have no energy..I feel as if I was hit by a truck. It takes tremendous energy to not fall into a day long state of depression. And now I am dealing with leakage. I feel overwhelmed. I was hoping that some of you might be so kind to share your stories of how you coped with the initial stages of this new way of living. How long did it take for you to take back your life? Many thanks.

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Ok! abit of postivity here.. ive booked a trip to italy for a week.. but its the first time ive been on the hols since surgery.. what happends when they do a search on me and they feel the bag?? just dont want them thinking i have a bomb on me etc :/ anyone had any situations like this?? how do they tend do deal with it or will it just show up on the xray scanners and they are trained to reconginse such things..

 

cheers 🙂

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Colostomy And ‘Popping’

Hi all

was wondering if you can help me, i have a colostomy now for 3 months and will have it for a further 3 months and then will have it reversed.  I have been off work for these first 3 months but will be returning next week and am absolutely terrified of my stoma ‘popping’ at the wrong moment like in a meeting etc – how does one prevent this from happening ??? No one knows at work about my stoma as dont feel confident enough to explain it all to them as they all my age and guys.  Food wise what should I avoid for gas or are there tablets etc that you can take to control it?  any tips or advice would be lovely.  PS have heard that peppermint tea is good?

Saffa

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Considering A Colostomy And Have Questions

Hi!  I am considering having a colostomy and would like to know the good, the bad and the ugly.  I have a spinal cord injury at the C6-7 level so have no control over my bowel.  It has been 16 years now and I have been manually evacuating my bowels, but now things are changing and I am considering a colostomy.  Right now I do manual evacuation every other night and it can take up to 2 hours to complete so it really cuts into what I can do socially.  I am hoping that the colostomy will give me more freedom to go out and do things, but I am also afraid of the unknown.  I see a surgeon on Monday to discuss the surgery, but I know that the best source of info comes from the people that have been there and done that…so I am hoping you will give me feedback and let me know all the good, bad and ugly things that can come from having a colostomy.

Thanks!

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Irrigation With A Colostomy

I was very unwell yesterday. At midday I started having terrible contractions and my stoma stopped working. Then the pain increased so that it was a constant pain for 1 hour. Then I threw up and the pain  lessened only to increase agin within 10 minutes This went on till 9pm when air finally escaped from the stoma and the pain stopped.. This scenario happens every month or so. I use to go up the hospital where they put me on morphone and keep me in for observation in case the bowel bursts but I no longer do that. I keep my fingers crossed the blockage will unblock itself. It always has unblocked itself. My surgeon said I had a lot of adhesions and there is nothing surgically they can do for me. I have palpatations anyway at the thought of any more operations. I take buscapan for the pain but it did not help at all yesterday.
Does anyone else have this problem. ??
I was thinking of trying irrigation. Before I make an appointment with my stoma nurse I would like to know if other people irrigate and if it works. I am frightened of doing it but I am terrified each time my bowel plays up.
I appreciate any help you cvan give.
Thanks
Maureen

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Irrigation With A Colostomy

Colostomy

Do you ever forget you have a colo
sotmy?  Mine seems to hurt all the time.  I sseems to burn and bleed a lot.  Is that normal?  I have had it for about a year and a half and I still have trouble with.  Can you be allergic to the thing that sticks to your stomach?  Thanks

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I have a colostomy and have had it now for about 2 months.  My surgeon said it can be reversed and I have a follow up with her in January to hopefully begin the process of testing for the reversal.  She said at my last visit though that sometimes they have to do an ileostomy because things need to heal.  I am so scared that I will go into surgery and wake up with this.  I also am fearful that even though she said it can be reversed what if they can’t do it?  I am only 42 and this has affected me greatly.  I am so depressed and anxious all the time.  I just want to be myself again without the bag.  Has anyone with a colostomy went in for reversal and had to have a temporary ileostomy?  Any advice would be helpful.  Any tips on accepting this until the reversal?  I ahm so depressed and don’t want to go anywhere or do anything.  I am happy to be alive but I can’t seem to shake this depression.

Thanks 

Lori

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