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I just got an iliostomy

Sun Jul 17, 2022 8:48 am
"MeetAnOstoMate is the best website for people with an Ostomy. So much understanding. Everyone should join."

Sorry, i dont know how to spell it. What do you guys do for at home pain control? I have only had it a few days and i have so so many questions. I know the swelling is supposed to go down. But i feel alone. So much stress and uncertainty 

Sun Jul 17, 2022 9:38 am

Hi Way and welcome....you are far from alone and all of us started where you are....I'm 4 months in with my ileostomy and learn a trick or tip everyday and if not just ask on here no question is off limits....as for pain they were only giving me 3 regular Tylenol went to my doc he gave me with codine and it got me through.....sleep as much as you can, eat soft foods like eggs, yogurts, cheese, fish etc you will find in a while what foods you can do and what foods you can't there is no right or wrong answer concerning foods just remember we got to chew chew chew and water is our friend drink lots of it and salt ur food us ileostomy people lose our sodium very quickly.....mostly stay positive keep your humor.....stay strong and carry on. It all does get better with time trust me.....

Your homie with a stomie

Tracy



Last edited by Homie With A Stomie NS on Sun Jul 17, 2022 10:35 am; edited 1 time in total
MeetAnOstoMate - 27,789 members

Sun Jul 17, 2022 9:40 am

Hello Wayoflife23. 

I wonder do you maybe have a stoma nurse who has been allocated to you?. Plenty she/he will know to allay your worries as mine sure did years ago. 

Totally understand your thoughts as a lot for you to have come through and contend with. 

Plenty of help has been offered here to so many that I have read since joining. 

All I can suggest is don't keep your worries/concerns in, let all out no matter even if at times you think it is too small to concern about. 

Take care, and wishing you all the very best for your recovery and the future. xx

Sun Jul 17, 2022 10:31 am

They gave me some really good pain killers when I left the hospital and also Tylenol. I never took any of the prescribed pain killers but I lived on Tylenol for about a month. The key is to take it regularly and not wait to take it when pain increases. I took 1000mg every 6hrs. 

Sun Jul 17, 2022 5:19 pm

I found that pain from the actual surgery went away pretty quickly.  However, your repositioned intestines need to settle in and figure out where they belong, and this can cause gas to become trapped, which can be painful.  Try using Gas-X.  It breaks up the gas bubbles and allows the gas to move more freely and get out of your system.

Sun Jul 17, 2022 10:31 pm

I've probably one of the worst-case scenarios. I had my original surgery in Jan 2010. I've had 17 surgeries since. I've dealt with a lot and had to learn on my own but now I do own it. I am on pain meds ever since the original surgery. My last surgery was a TIPS procedure to relieve pressure on my artery that went to my liver. Mar 2022. It's taken 12 years and a lot of pain but now I'm doing better than I have in my whole life... This might sound like a gimmick but give your pain to your God. I don't know how it works but it works. I'm not a very religious man but I know that something is out there when we die.  I take Vicodin on a daily basis and have since 1982 when I had my original accident in the Army. But in 40 years I never took more than 4 a day. It would be easy to do but I would not allow myself to become 100% dependent on Opioids. I can't take aspirin or N-saids because of allergies. All I can say to give you hope is it will get better. God Bless   

Mon Jul 18, 2022 7:03 am

My muscles keep spazing in my abdomen so they gave me something to help that and its been easier. My entire large intestine was removed and incredibly swollen so i have several scars including one just above my bladder that was making it hard for me to urinate due to pain. The incisions feel better already but i think the fear in what all of this is, is holding me back a bit. I got up and walked around but i found i was afraid to stand up straight for fear of pain. 

I was just shown how to clean the bag but im still afraid to touch the stoma for fear of pain 

I still have the jpack drain and im afraid of the pain when they remove it. 

Noticing a pattern in fear here...

Mon Jul 18, 2022 7:16 am

Walking is the best thing you can do right now. Your stoma has no nerves, so touching it won’t hurt. If the drain you have is the same one I had, it’s really just uncomfortable and not really painful when removed. 

Mon Jul 18, 2022 7:52 am


Homie With A Stomie NS wrote:

Hi Way and welcome....you are far from alone and all of us started where you are....I'm 4 months in with my ileostomy and learn a trick or tip everyday and if not just ask on here no question is of...

Hi. Its been almost 50 years since my illieostomy and I still kind of remember the pains that I went through and fear after my surgery. The pain is likely from your surgery and unfortunately take at least 6 weeks to heal. Its probably best to take Tylenol if that is what your pain is from or something stronger that your doctor may have prescribed.

In the last couple of years, I have been experiencing lower abdominal pain near the stoma. I have had MRI's and CT scans and fortunately it's not from Crohn’s which is why I had to have my surgery in the first place. My doctor believes its from scar tissue and not much can be done without creating more scar tissue. But, she prescribed Dicyclomine 10MG and most of the time it relieves the pain very quickly by relaxing the intestine. I only have my small intestine left and my large colon was completely removed.

Best of luck to you and be patient and stay positive.

Connie

Mon Jul 18, 2022 8:48 am

Hi Way i,ve had my ilieo. for 30 some years, i,ve always used tylenol as i dont tolerate aspirin. 

Mon Jul 18, 2022 11:56 am

I feel for you so much.  It’s just a year since I woke up in intensive care with an ileostomy after going in to hospital for an emergency appendectomy.

It does get better, it really really does, and you have found the best place on the internet to get all the help and support you need.

It’s a major life change and it takes time to adapt.  It isn’t always easy,  - I expect there’ll be embarrassing moments -  but I think for every person who has one, it’s better than the alternative would have been.

Sending you loads of good wishes and everyone on this site is behind you.  Good luck!

Mausom

Mon Jul 18, 2022 6:36 pm

Hopefully you receive something effective for the pain soon.  The pain will subside like the swelling and stitches. You’ll be feeling different forever, I had similar surgery, a long time ago. I would definitely try to stay away from hard to digest foods for a long while and only then introduce slowl🔆Raw carrots and popcorn that could save you a lot of uneccesary  unpleasantness🦉be really kind to yourself right now so your recovery is positively smoother. Great group here and tons of info. Be well🧞‍♀️*Ive always worn two clips….  And it’s saved me so many timez•

Mon Jul 18, 2022 9:23 pm

Hi, I know the feeling all to well. I had a million questions and felt nobody had any answers. To begin I was able to have tramadol and hydromorphone from both my surgeon and family doctor. Tylenol 3 made me feel awful and didn't work. I am willing to help you any way I can. I feel  more confident and have navigated through so much. Let me know if you have any specific questions and I will try and help the best I can. You can personally email me if you would like ****. God bless you 🙏❤️

Mon Jul 18, 2022 11:54 pm


L’s angel wrote:

I feel for you so much.  It’s just a year since I woke up in intensive care with an ileostomy after going in to hospital for an emergency appendectomy.

It does get better, it really really does...

Exactly what this person said.

Things will settle and get better. 

I've had my Ileostomy coming up a year, after emergency surgery for ulcerated colitis and ruptured colon. 

Always, always ask you stoma nurse anything you want, they are a tremendous bunch of knowledgeable people, as well as those on this site who live with these  changes in our lives.

Take care 

Tue Jul 19, 2022 10:26 am

Way....you're not alone.  Any questions you may have just message me....  

Tue Jul 19, 2022 10:32 am


Wayoflife23 wrote:

My muscles keep spazing in my abdomen so they gave me something to help that and its been easier. My entire large intestine was removed and incredibly swollen so i have several scars including one ...

The stoma does NOT produce any pain.  I was SO scared too but I touch it while cleaning showering or changing my bag.  

As far as pain I used a heating pad on my belly for 3 months after emergency surgery.  It will help you relax and SLEEP.....

Wed Jul 20, 2022 8:33 am

Just to add to what others have said: it does get better and you will get used to it. I’ve only had mine since April this year  and I didn’t expect to have it. I woke up with it after having emergency surgery for acute mesenteric ischemia. Your ‘go to’ people are your stoma nurses. The other thing is to try different appliances by taking advantage of their free samples. There’s no reason why with the right products you need to be uncomfortable or suffer from leaks. Good luck - you are not alone 

Wed Jul 20, 2022 9:09 am

You had pieces cut off your stoma to test for cancer? 

Wed Jul 20, 2022 10:13 am

It will get better every day, just hang in there and do as your stoma nurse tells you. My Ileostomy is 1 year old next month and I use Hollister products and up to now I have not had one leak. I think it's because I only clean my stoma when changing my bag with warm water and nothing else, but make sure you dry is properly. A lot of people use all sorts of creams and cleaners but warm water is all you need.

Thu Jul 21, 2022 1:56 am


Wayoflife23 wrote:

My muscles keep spazing in my abdomen so they gave me something to help that and its been easier. My entire large intestine was removed and incredibly swollen so i have several scars including one ...

Hi Wayoflife,

I'm brand new too, I'm just almost 7 weeks post op - I had 2 ops immediately prior to the 3rdcwhere I got an ileostomy.  I'm in Ireland.  I take paracetamol but because I have lost so much weight I am only allowed to take children's dose of one tablet. The pain will go, I promise. And it is a very lonely feeling. I had those fears that you have too about looking at, never mind touching the stomas!! (I have 2 one is a fistula, -I like to think of it as a vent- the other is for waste or poos 💩 simply put!!) As I got stronger, I was able to tolerate looking at the stomas. I was lucky/unlucky depending on how you look at it that the nurses changed my stoma bags every second day because I was too weak. But gradually I was able to do it myself even though it is lovely if you have someone to help to do it for/with you as you come to terms with it.  I have named my stomas Milly and Molly respectively!! Milly is no trouble to change Molly seems to have a spiteful sense of humour though!!!🙄💩💩💩 😂So be gentle with yourself I'm only just in front of you on the road on this journey. 

My problem is getting my output to thicken. I seem to have a revolving door relationship with hospital at the moment having been readmitted twice because of high output and dehydration. I am taking 2 immodium  and 2 codeine phosphate 4 times a day along with 3 magnesium. I'm just out of hospital a few days having got output to1100ml ish. But because of hospital leaving me short codeine phosphate, - just 3 tablets!  until my pharmacy opened next day after discharge - I'm now in the horrors again, with output in the 2,000mls. I am drinking 1 litre St Mark's Solution (oral rehydration solution or ORS for short), and just 4 cups not mugs of decaf tea per day. (I'm not a coffee person!) But my output is still high. I am eating all the foods to thicken stoma output, and the numbers are coming down only very slowly.🙆🏼‍♀️ I will have these Stomas reversed in time, usually done within 3or4 months but because I am so thin (93lbs and I'm 5ft) and loosing, I have been told it will be way longer than that. My frustration and sort of fear lies in the fact that I may have to go back to hospital again and again. I take my hat off to all the other Ostomates here. Ye're amazing and inspirational.👏  I can't even get dressed in day clothes yet because of tenderness and itch around stoma wounds and, well,  I just can't stand day clothes at the moment🤷🏼‍♀️.

I wake up everyday with a sickening headache that I am told is caused by magnesium depletion. Has anyone else had a similar experience? And if so how long before it settled please? Thanks all. Apologies for long reply.  I may post this reply on another topic subject as I realise I have a lot of questions myself. Slán🙋🏼‍♀️

Mon Aug 15, 2022 6:28 pm

My doctor had to give me the liquid form of hydrocodone. After 7 months he stopped prescriptions. I still have pain. But I just deal with it or eat delta 8. 9 or 10 gummies. They help some and good for help to sleep. 

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