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What should I do?
I got an ileostomy 3-4 months ago. My hospital stay was terrible. I was in the hospital for three weeks with an ileus. My bowels have not really gone back to normal after surgery.
For background, the ostomy only works with me laying down and with eating easy to pass foods. If I stand, not much will come out, but if I go and lay down it freely passes. They think it is because of my adominal wall is pushing on the stoma. They did a contrast and found that there is intermittent narrowing when standing at the stoma (which I was saying) but resolves when laying down.
Anyways, the hospital/doctors arent being helpful. I have been to the ER three times! and all they want to do is send me home. I have been surviving off 1000 calories or less for the last 7 weeks since discharge. I am constantly nasceous, in TERRIBLE (knives) pain at night that I cannot sleep, but they keep telling me that my labs are "fine" and that I need to seek second opinions. Problem is, the nearest hospital to me has a wait time of 6 weeks! I can't eat, sleep, and I am in constant pain!
I keep trying to get temp tpn to give my bowels a break and to get SOME nutrition because I can't hardly eat anything. I wouldn't be surprised if they gave me a short course of tpn (like 45 days) for that to relax my adominal wall and for gut to get back in rhythm. But they deny that even though I can hardly eat anything and vomitting. I feel like my guts got "stressed" after surgery and giving them time to rest would fix everything.
What do I do?
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I wish I could offer some advice but it's way outside my knowledge. I do feel empathy for your terrible ordeal. It's bad enough to live through the pain without being gaslighted by the medical types.
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1 ReactionThanks for the kind response. I tell you, 50% of doctors are not understanding, the other 50% is -- but those are hard to find. I saw on your account you have a colostomy? Hope you are doing well, Piki.
My husband has had many operations but his ileostomy is by far the worst. It's been just a year ñow with pain around the stoma area. Stoma works fine standing up or laying down, but the pain goes away while laying down. He has multiple MRI's but nothing shows up. It's frustrating that you can't look inside to determine what is causing the pain. While he doesn't vomit, he has dry heaves. His calorie count is also low so I supplement with milk, ice cream and protein powder. Also he finds that eating soft foods and soup is easier on his stomach. I wish both of us a solution to this problem of living with an ileostomy. Good luck.
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1 ReactionYes. Hope your husband feels better too. My doctors arent helping and are telling me to get a second opinion, but even the Mayo Clinic doesnt want to take it on.
My husband is being scheduled for an endoscopy soon. Hopefully that will shed some light on the problem. Do you have a GI doctor who is monitoring your issues? I hope you get answers soon. Fingers crossed.
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1 Reaction@hallo643, I have a similar question as @lauramae3 asked. Are you being monitored by a GI doctor? Do you have an ostomy nurse?
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2 ReactionsAgree and continue to look for a good one, I had to drive 3 hrs to find a good one. Mainly because I live in a remote area and not many GI doctors in area who have dealt with ostomy issues
Take care
Age plays a roll today on whom gets what treatment, etc.
My husband also had a B12 infusion and continuing daily B12 vitamin supplement daily. Iliostomy information relates that low B12 is a side effect of the surgery. Good for energy and appetite.