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Has anyone with an ileostomy dealt with nonstop nausea?
I’m 1 year into my permanent ileostomy and have done really well since August until nausea hit me 3 weeks ago and it’s been relentless. I used Zofran shortly after my surgery a year ago for occasional nausea but this is different and nausea medications have done very little to help. Seems to get a bit better in the afternoons but the mornings are the worse. It’s not affected my appetite really or caused me to lose weight or kept me awake at night but it’s basically constant and I’m tired of it. Fortunately I got an appointment with my gastro dr for next week but wondering if anyone else has had the same problem. I have noticed that my output is much less than normal but no pain is involved like an obstruction would be and I’ve had obstructions so I know what they feel like and know that my output stopped with an obstruction. I’m praying it’s not related to that issue. Any ideas?
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Hello everyone I see the posts are older however thought I would share . I have an illeostomy three emergency surgeries . I have struggled with nausea seasicknesses for 20 months. Have recently found a fabulous dietician who is helping work through this
Amalia Karlin RDtheostomydietican.com she is in Fl but does virtual .
I have unusual situation also dx with gastroparesis which can cause nausea. Divergent colitis and I still have ulcerative colitis in remaining lower colon all which can cause nausea etc.
Perhaps ruling out other dx and understanding the surgery can impact vagas nerve which can cause nausea etc along with dehydration etc.
🙏
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1 ReactionAnd that is exactly the same dietitian that I just recommended in one of my posts here. Glad to hear someone else uses her and is happy with her. She's been a miracle worker for me!!
She is a blessing, thank you ditto very happy to know you are happy as well.
Thank you so much for you help. Already reached out to the stony dietician and she is so knowledgeable.
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I'm a 12 year ileostomy patient that has had approx 10 completely obstructed bowels over the years. First time it started it was found I had a 8.4 cm incisional hernia that took them over 1.5 years to find. Second time it started , once again they could not find the reason for the obstruction but ultimately found a surgeon that figured it out and repaired it. The stomach itself was herniated and he rebuilt the stoma. That time I had 5 completely obstructed bowels and because it was at the outlet, my whole bowel was completely full and bloated,, very very very painful. I was so glad he found it because I don't think I could have endured another blockage. That was 5 years ago and I didn't have any issues, until about 4 months ago and something has started again. I had about 3 or 4 times, I could tell it wasn't working right, and I was able to get it too pass at home but just a week ago, it totally blocked again and I was hospitalized,,
I was vomiting like a fire hose and the pain was so bad, I was actually passing out. Hospitalized and after 3 days it cleared and instant relief, but ever since I have been nauseous. When I lay down it gets a lot better but as soon as I stand the nausea hits me almost instantly. I'm going to a couple specialist now to try to fix it.
Now 2 points to this whole thing.
First, I never had this nausea after the blockage cleared, none, ever.
Second, when they first removed my colon, I had an intestinal leak, filled up completely with poop, that almost killed me. SEVERE Peritonitis followed by full blown septic shock. Was very lucky to survive,, hospital says I survived a less than 5% survival infection with the SS.
So what I was left with was massive scar tissue, so bad my intestine is all bound together with the scar tissue so it cannot move like it should to promote the movement of the stool. They were surprised that I was able to pretty much what I wanted because of it.
This will give you an idea of how bad,
Removed gall bladder , 9.5 hours,
Removed a kidney and Ureter tube, 3 surgerical teams, 14.5 hours.
This is the first time I've ever had this nausea like this, and I 100% believe there is a pretty good obstruction, just not 100% blocked.
I believe your experiencing the same thing, a partially obstructed bowels.
I don't want to sound negative but from what I've been thru that's exactly what it sounds like.
Best of luck and I'll say a prayer for you.
These abdominal issues are so horrendous and painful that people that hasn't experienced it will never know what we've been thru. That's for sure,,
@dennis287, you sure have been through the wringer. How are you managing the nausea? Is it improving?
@colleenyoung
They put me on a new, newer pill called Pantoprazole,,
But since this last blockage, the GI surgeon told me to keep a liquid diet until I can get someone that can and willing to try correcting.
Unfortunately he told me he wouldn't try cutting into me to fix.
It helps,, but it's still there,,
But not eating solids also is helping,
I contacted the Trauma surgeon that removed the scar tissue around the kidney for the Urology surgeon .
I have a appt on Dec 1,,
So far now,, this is where I'm at with it,,
Thank you for asking,
It's kinda nice chatting with someone that understands what I'm going thru,,
My family and friends supportive, but they really just know what I'm going thru,,
Please ask anything,, I don't mind talking about it,, actually I think it helps me in dealing with it,,
Take Care
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