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05-10-2014, 02:28 AM   #1
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
My new stoma

So I have had my ileostomy for 2 days now. Still don't know what to make of it all I woke up in the middle of the night last night and my bag was inflated which was scary I'm not sure what caused that. My output is very watery but I think that might be due to not eating properly so I am just waiting for the nurse to bring me some breakfast. I guess the thing I wanted to ask is how you guys got through the first week or so it's all a bit daunting still. I am sure I will start to get used to it I don't think being in the hospital helps because it's not natural. Also does anybody suffer from pain due to gas it's ok when I lay on one side but as soon as I lay on my back it starts to hurt not sure if it just my body getting used to the change.
05-10-2014, 04:34 AM   #2
Kat24
 
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You will get used to things and in a few weeks it will seem normal and not scary!your stoma nurse will help you lots and tell you the right foods to eat to thicken output.i didn't suffer with gas pains so I can't be very helpful there sorry!but good luck it will get better
05-10-2014, 05:33 AM   #3
maimmie
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Everything you are saying is normal for the early days. Gas pain is normal and so is a big puffy bag from gas. It all gets better and less daunting with time.
The first couple weeks are the worst and it's an uphill battle but just remember it is all going to get better.
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05-10-2014, 07:01 AM   #4
timbo267
 
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I am feeling a bit better now I have changed the bag by myself and it wasn't too bad. It is just the pain from the gas that is bugging me so I hope it passes soon
05-10-2014, 07:07 AM   #5
nogutsnoglory
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Everything is chaotic in the first few weeks as your body adjusts to the new stoma and recover from surgery. Anything you are experiencing now is likely subject to change. Try imodium to thicken or slow output and simethiocone for gas.
05-10-2014, 08:05 AM   #6
2thFairy
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Gas pains are the worst! I had a lot of gas pain in the first two weeks. The inflated bag full of gas is something that happens to all of us from time to time and for some of us it happens every night while we sleep. As for the liquid output, it may take months before that gets better. Brand new ileostomies can be fickle. You are also more likely to experience dehydration in the first few months, but this will work itself out with time. Certain foods can help thicken up your output. I have thicker output when I eat potatoes in any form (crisps, fries, mashed, baked) and applesauce. Many people eat marshmallows to thicken up their output. Cheesecake is good for that, too!

You are going to have a lot of mental adjustments to make in addition to the physical ones, but you sound like you are doing really good! Keep asking questions...we are all here for you!
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05-10-2014, 09:04 AM   #7
VeganOstomy
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Good luck! The first month is the most difficult, then it gets way better without all the pain and uncertainty.

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05-10-2014, 09:52 AM   #8
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Not a great feeling when you do your first bag change and then it leaks. But I am still soldering on the gas pain is still there which really doesn't help. Thanks for all the advice and support I just want things to get easier
05-10-2014, 10:32 AM   #9
DJW
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Hi. It takes time to adjust. Try not to worry to much. Gas pains are awful. I found the only thing helpful for gas was walking.
Keep us posted and feel free to ask anything.
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05-10-2014, 12:28 PM   #10
PsychoJane
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Hi Timbo,
Everyone as pointed you right. Beginning... is the hardest part. When I had my stoma surgery, I had been on TPN for a while and my digestive system was not really used to food anymore. It took a while for everything to settle and be pain free from eating.

Be aware that leaks at first are common... annoying, somewhat discouraging BUT it gets better when your stoma reach its "definitive" shape and size. It seems all challenges are thrown to you right at first.

The bag bubbling can be helped with bags that have filter (some have, some don't). Unfortunately, the filter usually works only at the beginning, gets wet and then lose much of its capacity to ventilate. It is still worth it though if you don't have any on your bag, you might be interested in trying one with.

Watery output is also a good part of why you can have leaks. I would say it is less frequent when the output is thicker. You may want to try ileo-sorb or Convatec diamond. It absorbs water and prevent the ballooning a bit.

When you get home, go on companies website: Hollister, convatec, coloplast, salt, dansac and fill the forms for sample products. You might be surprise to find some appliance that you feel way more comfortable than others!
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05-11-2014, 02:42 AM   #11
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Just want to thank everyone for there advice and support. It would have been soooooo much worse if I didn't have you guys to talk too so thank you. I am leaving the hospital today which I am happy about. I just hope my stoma settles into a routine pretty soon.
05-11-2014, 03:15 AM   #12
Kat24
 
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Just going home helped me feel better!just take it really easy and you will be in a routine in no time
05-11-2014, 07:12 AM   #13
nogutsnoglory
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Take it easy Timbo, relax and get better. In the meantime read read read about ostomy care and request samples from companies so you can try a variety of products. Just ask for cut to fit because your stoma will change size.
05-11-2014, 08:08 AM   #14
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Just got home parents are fussing like mad lol. I am gonna have a look at all the other bags and talk to the stoma nurse about them. What bags do people prefer one or two peice?
05-11-2014, 08:36 AM   #15
timbo267
 
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I have just noticed a asacol tablet in bag i am a bit worried if I should be taking meds at the moment.
05-11-2014, 09:41 AM   #16
PsychoJane
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My preference goes toward the brand coloplast in two piece version sensura-click. It seems to be convenient for many people but since we are all different, it might not necessarily be the best for you. I highly encourage you to try it but don't neglect to ask sample from other brands also if you get the chance.

For the asacol, make sure that you tell it to your GI if it keeps happening. Sometimes it is a matter of acid level in GT that may prevent the pill from dissolving as it should. It might be a ponctual event but if it is recurrent, you doctor might consider switching you to another type of 5-ASA that could be more easily digested/absorbed.
05-11-2014, 10:34 AM   #17
nogutsnoglory
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I prefer a two piece but during post op healing a one piece will be more delicate to a tender abdomen.

I'm not familiar with Asacol but you can't have any delayed release or enteric coated pills and may need a different formulation.
05-11-2014, 01:24 PM   #18
Absentminded
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I used the same as PsychoJane, the two piece Coloplast click bags.
I used them from 1 week post op and loved them. I'd definitely recommend them!

I used to take Asacol and several times noticed them in the toilet after I'd been; when I mentioned it to my IBD nurse, she said that they were probably just the casings and that it was nothing to worry about.


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Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
05-11-2014, 04:11 PM   #19
2thFairy
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I use one-piece Coloplast Sensura with the Brava strip paste.
05-11-2014, 07:20 PM   #20
chuckmya
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I too had an ileostomy years ago and was taking Asacol @ the time. The PDR states that Asacol is metabolized in the colon and beyond.....so possibly switching to a med like Pentasa may be a better choice as I believe it is metabolized in the small intestine. I would ask your GI doc if you should be on a different med?
05-11-2014, 07:43 PM   #21
maimmie
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I've had great luck with coloplast products both one and two pieces. I personally prefer the one piece just because it's the lowest profile. I found the lock on the sensura click stuck out too much and showed through a lot of my clothes.
05-11-2014, 08:06 PM   #22
Susan2
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I also use a Coloplast one piece but different brands suit different people. From my experience (24 years with an ileostomy) the adhesives vary considerably and some cause reactions on some people, others on other people; and some just stick better on some people. It's a case of finding what suits you best - trial and error, I'm afraid.

There are also all sorts of additional products available - I use Coloplast Brava strip paste because I have a "valley" leading out from my stoma. This can cause leaking unless I fill it in. I also use the Brava elastic tape if I am concerned that a certain activity might dislodge my bag or if I have to extend the life of the bag because it is too difficult to get to change it.

I don't use any cleansing lotions or creams, as I find that just water suits me best, but there are various things available and people will be able to tell you their experiences with them.

The main thing is to ask if you have any problems at all. There is a mass of collective experience here on the Forum and people are very happy to help.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
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06-19-2014, 01:16 PM   #23
fazell72
 
Join Date: Aug 2012
Location: Glasgow
Just had colostomy 2 days ago only temp but struggling mentally with it all. Will it get better pls help!
06-19-2014, 02:26 PM   #24
DJW
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Just had colostomy 2 days ago only temp but struggling mentally with it all. Will it get better pls help!
Hi fazell. It will get better - give yourself time to adjust. We're here for you.
06-19-2014, 02:58 PM   #25
fazell72
 
Join Date: Aug 2012
Location: Glasgow
Thank u I guess I m just freaking out a little with the stoma and felt very anxious after all the drugs I ve had. Feels like I mite be starting to feel abit more human tonight. Just such a huge change even tho only temp. Pls tell me I ll feel better in a day or so x
06-19-2014, 02:59 PM   #26
2thFairy
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Not in a day or so, but as the weeks go by, you will feel better.
06-19-2014, 06:29 PM   #27
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
I have just been reading this post that I made and am suprised how much it doesn't bother me anymore I'm back to work and everything. I do still have some problems like waking up at 4am realising it has leaked not fun, lucky the gf wasnt staying at mine that night lol. Life has improved sooooo much and no more pain in the bum. Still praying for a cure though so I can life a (normal) life.
06-20-2014, 12:12 AM   #28
fazell72
 
Join Date: Aug 2012
Location: Glasgow
Is that only a month or do after your surgery timbo? Makes me feel better hearing this.
06-20-2014, 03:21 AM   #29
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Yeah it gets a lot easier I didn't think I would be able to cope but you get used to it .
06-20-2014, 06:34 AM   #30
Wendles
 
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My son had a stoma operation for his 13 th birthday just over a month ago and he is doing wonderfully ! Not sure if I want the reversal done as he has no pain or vomitting from his crohns it is like we got our old son back, I now think stomas ( as scary as it first seemed) are wonderful things !!
Good luck, it only gets better !
Wendy
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A temp stoma after a horrible abcess which has him eating everything in sight
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