Hello from a New Ileostomate - Seeking Advice and Sharing

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beatrice
Jan 06, 2010 6:05 pm

Here I am with my new (Dec 15th, 2009) permanent (with rectal stump) ileostomy. So happy to have found this group of people. So much information and positive help.

Have just completed my profile -- so won't duplicate it here -- hope you have a look.

So far, I'm coping well with this life change. I don't think the bag/appliance will be a major issue for me (but none of my pants 'work' ... excuse to shop when I'm feeling stronger
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)

What is getting me down? That darned anal discharge and the feeling of 'having to go'! I know that with some people it's an ongoing thing ... I'm hoping it settles down. Had to wear pads for years with my Ulcerative Colitis and was assuming that at least that would be a thing of the past. No such luck. Oh well, I do have a big stock of pads that need to be used.

Anxious to hear about traveling with an ostomy (especially in non-metropolitan areas, small towns, places that don't have pharmacies, etc., minutes away). And snorkeling ... I love it and am a bit concerned about being in the water for over an hour at a time. Snorkelers out there ... drop me a line!

Thanks and talk to you soon.

lottagelady
Jan 06, 2010 6:19 pm
Hi Beatrice and welcome to the site. Can't give you any info on snorkelling, but don't see why it should be an issue once you've settled down with a bag and routine that suits and you don't have leaks etc... As you've probably gathered many of us are still having the 'mucous' thing which ain't too pleasant, but I suspect from what you have said in your profile, life will be an easier path for you once you have got your strength back.  You have probably also noticed that you can ask anything here and will get a lot of advice from those of us who 'know', though we are all generally a bit 'mad'. (it helps!)



Love the Chow! Take care, Rachel x
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Gus
Jan 06, 2010 6:51 pm

Hello Beatrice
Welcome to the exciting and outrageous world of us ostomates. I too have an ileostomy after Crohn's disease destroyed my bowel. I had my rectum removed about 3+ years ago after having a reversal done and the Crohn's was active in the rectal stump. So, traveling with an ileostomy. I have just given up being an interstate truck driver, so travel whether urban or country is no big issue. Just get in touch with ostomy suppliers and get a sample or two, and they will send you a bag to carry your supplies. You can fit 10 bags, 2 wafers, and your paste and wipes easily. Also, always have with you some of those baby wipes. The easiest way of toileting without having to go into those stinky public loos is to swap your bag and use the wipes to clean the inside of the flange and stick another bag on. Takes 5 minutes and you're done. Good luck with your new friend, and we here are always willing to give advice, moral support, and hold you up emotionally. And I will always make lewd, sick, and sometimes inane comments about my sword and watching the ladies' butts. You will get to know some excellent people here.

Best wishes
Steve

Txgirl
Jan 06, 2010 6:57 pm


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Hi B!!!
Steve & Rachel said it best!!
I haven't had my colostomy that long at all, just since October. I have learned so much from the wonderful people on this site, and I am sure you will too.
I have a friend who has an ileostomy, and he is a huge surfer & SCUBA diver. He does it all the time with his bag.
I hope everything is going well with you, and don't mind Steve and his swashbuckling & flinging about of his sword! Wear a helmet; it makes the hits to the noggin easier to take.

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vulcanBMk2
Jan 06, 2010 7:32 pm

Hello & welcome. Being a urostomate, I have slightly different issues (oh no, puns). There are a lot of good people on here who are better at advice & support than me. However, we are all "Baggies in Arms"---you can always find a sympathetic ear on this site. Post often; we don't bite.

 

How to Manage Emotions with LeeAnne Hayden | Hollister

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Gus
Jan 06, 2010 7:44 pm


Issues? Do tell, lmao.
Txgirl
Jan 06, 2010 8:35 pm


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...and some of us got so many issues, we need a magazine rack!!!!  

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beatrice
Jan 06, 2010 11:55 pm
Thanks for the welcome! I can tell I'm going to like it here

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Maryallison
Jan 07, 2010 2:13 am
Welcome Beatrice, from another ileostomate.  I "earned" mine because of diverticulosis when my colon decided to pop and spill.  We really are a friendly group and one or two of us are downright crazy.  No names mentioned, you'll figure it out for yourself.
Txgirl
Jan 07, 2010 3:37 am


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..heheheheeeeeee
Gus
Jan 07, 2010 9:06 am


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Which one or 2 would that be Mary

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eddie
Jan 07, 2010 2:38 pm

Welcome Bea! I have an ileo. Change your ileo before you get in the water; you should be okay for an hour or two. Also, try rings if you're not using them; they repel water better than paste. I get in the pool with the kids and take hot tub baths without any problems, though I don't swim. I don't have any part of my rectum left, so I can't help you with those questions.

Have fun!
Eddie

beatrice
Jan 08, 2010 2:07 pm

Thanks, Eddie,

I'm going to try to find some sort of waterproof contraption to put over (or around my body and over) the appliance. I may not really need it, but I'll feel more comfortable - at least for the first few times.
When hubby and I get into the ocean and finally get to the good snorkeling areas (I'm not a great swimmer) ... we're probably in the water for close to 2 hours.

nakedinthesunt
Jan 11, 2010 3:34 am

I have been to Mexico snorkeling for up to 3 hours with no problem. I use our hot tub regularly, although usually for a little less than an hour, and every weekend we're at a hot springs and I spend 4 or 5 hours in the water without problems. I use Hollister New Image.

beatrice
Jan 12, 2010 5:38 pm

So glad to read your reply! I use the Convatec 2-piece system (looks very similar to the Hollister) and haven't experienced any leaks (just the trace leak from the filter sometimes) so I am hopeful all will be okay in the water.

Once I get the okay from my surgeon (hopefully at the end of the week), I'm off to the pool to see how it goes. There is a hot tub there too, so I will pop in for a bit.

Off-topic: We haven't been to Mexico (all our snorkeling so far is in Hawaii). What areas are good for snorkeling? There are good prices for Canada/Mexico flights or all-inclusives ... I think we're due for a little holiday.