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.
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My new stoma
- Thread starter timbo267
- Start date
nogutsnoglory
Moderator
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.
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!
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!
Good luck! The first month is the most difficult, then it gets way better without all the pain and uncertainty.
PsychoJane
Moderator
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!
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!
nogutsnoglory
Moderator
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.
PsychoJane
Moderator
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.
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.
nogutsnoglory
Moderator
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.
I'm not familiar with Asacol but you can't have any delayed release or enteric coated pills and may need a different formulation.
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.
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.
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?:eek2::eek2:
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. :ghug:
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. :ghug:
DJW
Forum Monitor
Hi fazell. It will get better - give yourself time to adjust. We're here for you.
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.
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
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
I agree! I love my stoma and have opted not to have reversal. I haven't felt this good in 20 years!
I've got a appointment on the 3rd july with a specialist and i just know what he's going to say he wants to remove my colon and rectum and give me a ileostomy. I've had crohn's now for 14 years and I'm 31 now with 2 young children my life is none existent at the moment, I have tried every drug the nhs has to offer but nothing worked.I can't seem to get my head round having a stoma it really scares me and make's me depressed thinking about it but i suppose everyone felt that way
My stoma gave me a new life after Crohn's. While it seems like a hard thing to deal with, once you've found a comfortable ostomy appliance and you know how to manage your ostomy, it becomes invisible and you forgot that you have it most of the time. Sure, it's a bit more of a challenge than just being healthy without any problems, but if your procedure goes as well as most of ours have, you'll be able to get back to life and your two kids.
I wish you all the best!
maria
I love you God.
trust me it will get better. Yes gas pains hurt, one of my major complaint, still is my ileo was very watery pretty much the whole time. also I noticed that my bag filled quickly with air and when it was super full and couldn't get any more is when I had lots of pressure pain like I couldn't breathe usually happened in my sleep and would wake me up but all I had to do was burp my bag and I was fine. it was like I could take a deep breathe and felt good. Hope everything is going good for you and with every day it gets better and better.
my ileo was very watery pretty much the whole time. also I noticed that my bag filled quickly with air and when it was super full and couldn't get any more is when I had lots of pressure pain like I couldn't breathe usually happened in my sleep and would wake me up but all I had to do was burp my bag and I was fine. it was like I could take a deep breathe and felt good. Hope everything is going good for you and with every day it gets better and better.Well that's me nearly two weeks post op and to be honest as my stoma is starting to settle it does get easier. I still have moments when I think about it but not so bad. I can understand why someone who is in a lot of pain would fine it a god send. You basically can forget about it all day long. I only have a temp one as I had an op to heal a fistula. If my crohns were ever to get bad I wouldn't be so scared and believe me I never would have thought I d feeling this about a week ago, and it's still early days for me too.
Thank you for your comments. It is really important that people understand that a stoma can give them back their lives. I was terrified and put off having a stoma for far too long. Sometimes the journey is not smooth but the majority of people with stomas find that, once they discover the combination of equipment that suits them, they can do so much more and enjoy life so much more - it certainly beats living with excruciating pain and lack of bowel control!
For years I was of the mindset that I'd rather die than live with a stoma....and I never thought I'd be in the position to actually have to consider having one. Now that I have an ileostomy, I think EVERYONE should have one! For me, it has been one of the best decisions I have ever made. I love my stoma!!
For me, it has been one of the best decisions I have ever made. I love my stoma!!
- Location
- Midwest
My son recently had an ileostomy done. I asked about adding nutritional supplements because I've seen that on here. GI (at Mayo btw) didn't mention anything specific. Two months after surgery my son got his first mouth ulcer... then another ... and another. Now today he has a mouthful. Could this be vitamin deficiency related? What do patients that don't use their large bowel need to do or need to replace? One member here on the Kids forum section talked to me about irrigating it. I have no info on that from the Ostomy team or the Colorectal surgeon. She said that her GI said her son had diversion colitis because of not doing this. Any info or advice is welcomed!
Does your son have Crohn's disease? Mouth ulcers can be a sign of a flare up, although deficiencies can cause that too. A lysine supplement is often recommended for mouth ulcers, but it may not help if they're caused by a Crohn's flare.
The colon doesn't absorb nutrients apart from some electrolytes (sodium and potassium, for example) and water. His fluid intake will be important, but also make sure that he's not an a low-sodium diet (unless specifically requested by a doctor).
It's generally best NOT to supplement unless a blood/urine test indicates that it's needed. You can cause harm by adding unnecessary supplements to his diet.
DJW
Forum Monitor
Hi. I've discussed supplements with my GI doc. He runs blood work to check for deficiencies. He said if you're not deficient don'twaste your money . Too much of something you don't need can be toxic. Especially for kids.
Before taking anything talk with the pharmacist. Make sure there is no drug interaction.
I need B12 injections every other month. vitamin D...3000 iu/day. I occasionally need to go on iron.
I've never heard of irrigating an ileostomy.
Before taking anything talk with the pharmacist. Make sure there is no drug interaction.
I need B12 injections every other month. vitamin D...3000 iu/day. I occasionally need to go on iron.
I've never heard of irrigating an ileostomy.
- Location
- Midwest
Veganostomy, Yes he has crohns. They did a fecal calprotectin on the stool from his bag and it came back "17" and below 50 is considered normal. So they think his SED and CRP still being elevated could be that his large bowel is still not healed. I wonder if the ulcers are a part of this elevation too. Good to know that adding stuff can be harmful because I was thinking of adding some stuff to see if that helped. I thought his body would get rid of what extra he didn't need. But I don't want to hurt him!
DJW, I'm glad that irrigation isn't something. I would think I would have been told this at Mayo if it was something that was needed. His B12 was tested and it came back normal. But someone on the childrens site said that when you're taking folic acid, this can mask b12 deficiency. My son is on Methotrexate... so he takes folic acid-1 mg a day. He needs iron and vit D. So that was added.
Thanks for quick replies! Thank goodness for this forum and all of us helping each other!!
DJW, I'm glad that irrigation isn't something. I would think I would have been told this at Mayo if it was something that was needed. His B12 was tested and it came back normal. But someone on the childrens site said that when you're taking folic acid, this can mask b12 deficiency. My son is on Methotrexate... so he takes folic acid-1 mg a day. He needs iron and vit D. So that was added.
Thanks for quick replies! Thank goodness for this forum and all of us helping each other!!
There are some things the body can easily "purge" without ill effect, water-soluble vitamins are one example (you basically pee out any excess). But fat soluble vitamins, like vitamin A, E, D aren't as easily handled in excess. Iron is another one that you shouldn't supplement with unless there's a specific reason to (like iron-deficient anemia).
As DJW suggested, speak with a pharmacist after you've had some blood work done on your son and if there are any indications that he might be low on something.
DJW
Forum Monitor
I asked about folic acid at my last visit Wednesday. I was told I didn't need it because I wasn't on methotrexate. I don't know about B12 and folic acid interaction.
This forum is great. Keep asking questions.
I am 4 weeks post-op for colon cancer, leaving me with a temporary stoma. From my limited. Experience it does seem to get easier. The main thing to do is find the right products for you, and there are so many out there.
My main issues were leakage and overnight. After trying a few things I have fiund I'm eelatuveky happy with Salts soft convex one-piece bags, but with Convatec stomahesive paste. The paste is used for extra adhesion and to fill in a tummy crease that I have. It is practise,abd I'm not quite there every time yet, but getting there.
My overnight problem is that the bag needs emptying several times but with no sensation feedback I don't know to wake up to do it. I need to eat a lot to put on weight so controlling diet to reduce output is difficult. Have tried not eating after 6 but iutput seems to last anything up to 8 hours.
All this stuff was new to me and it does freak you out a bit, especially as I was told being left with a stoma after the op was unlikely, so I wasn't expecting it, but the surgery was harder than expected, so stoma was necessary - but should be reversable in a few months.
You'll get there, be patient.
My main issues were leakage and overnight. After trying a few things I have fiund I'm eelatuveky happy with Salts soft convex one-piece bags, but with Convatec stomahesive paste. The paste is used for extra adhesion and to fill in a tummy crease that I have. It is practise,abd I'm not quite there every time yet, but getting there.
My overnight problem is that the bag needs emptying several times but with no sensation feedback I don't know to wake up to do it. I need to eat a lot to put on weight so controlling diet to reduce output is difficult. Have tried not eating after 6 but iutput seems to last anything up to 8 hours.
All this stuff was new to me and it does freak you out a bit, especially as I was told being left with a stoma after the op was unlikely, so I wasn't expecting it, but the surgery was harder than expected, so stoma was necessary - but should be reversable in a few months.
You'll get there, be patient.
Well am six weeks post op and feeling great. Don't get me wrong i m not sure i d like to have a stoma forever as mine is being reversed - but if I do it's not the end of the world. To be honest I don't think I had enough or any support from the stoma nurse prior to surgery. This is maybe why I freaked out so much. Since coming home I ve managed fine only had one leakage and can basically eat what I want. Just want to reassure anyone going to have the op - I found it horrendous for the first couple weeks, but it does get better, infact give it a few weeks and u ll wonder why u worried so much . If only we could foresee these things!
The first month for me was miserable. But it really does get better. You get the hang of it.
One leakage ? Blimey, you have done well. In my 6 weeks since the op I must have had maybe 15, fortunately mostly at home. Things are be oming routine now though, even emergency chamges after leaks. Have judt been told that early reversal could be a possibilty for me though, fingers crossed. Apparently 8 weeks is the earliest, but we'll see, I have other issues that complicate things.Well am six weeks post op and feeling great. Don't get me wrong i m not sure i d like to have a stoma forever as mine is being reversed - but if I do it's not the end of the world. To be honest I don't think I had enough or any support from the stoma nurse prior to surgery. This is maybe why I freaked out so much. Since coming home I ve managed fine only had one leakage and can basically eat what I want. Just want to reassure anyone going to have the op - I found it horrendous for the first couple weeks, but it does get better, infact give it a few weeks and u ll wonder why u worried so much . If only we could foresee these things!
I m using the drain able bags, as with my crohns I have quite watery output. Just find them easier then just change the bag once a day. When do u think u ll be having ur reversal? Pls let me know how u get on. I should be getting mine in sept, seeing surgeons again in a couple weeks to discuss. Was told roughly 3 months for the stoma. I hope u get on ok.
Well, I was initially told it would be 4-6 months, and even then they said there is a waiting list for reversal, but in conversation with my stoma nurse on Fri she said due to my problems with output, if we can't control that, then early reversal may be possible. She said 8 weeks is the earliest as I don't now need chemo, so that would be any time from 2 weeks time. I don't know if I would be treated as more of an emergency and accelerated up the list or not, I need further talks with my stoma nurse.
To complcare things, I may have just hit upon a combination of drugs which successfully controls my output. If that proves to be the case they may say that early reversal is not necessary.