Hi, has anyone else with two ostomies been in horrendous pain with the ileostomy side, not my stoma one, because of an artery in my stomach? I get pain and can't digest very easily 😢, and because I am skinny due to my CVS illness, which doesn't help.
kerrycookie95
Jan 21, 2025 4:11 pm
SusanT
Jan 21, 2025 5:55 pm
Just to clarify, you have a loop ileostomy and are having trouble with the non-stoma opening?
Ben38
Jan 21, 2025 8:03 pm
Has your consultant sent you to see a dietician? If not, I would tell them you want to see one, and speak to your stoma nurse. Do solid and liquid foods cause the same problems? Are you on build-up drinks to keep you going and help you gain weight?
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infinitycastle52777
Jan 22, 2025 6:03 pm
SMA can stand for spinal muscular atrophy or superior mesenteric artery syndrome
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kerrycookie95
Jan 25, 2025 1:29 am
Wow, someone actually knows what it is. I have had this since my surgery. I have really struggled with hydration and absorbing the things I need. Got a Gino appointment because of SMA, so I am going to ask if I would benefit from some more TPN. Love this site, there's always someone nice here.
kerrycookie95
Jan 25, 2025 1:30 am
I have this among other things; it is horrendous when the pain starts, worse than having a baby.
warrior
Jan 25, 2025 2:55 am
Sorry... I wouldn't know about pain from having a baby. I did have a few broken bones in my lifetime. Doubt that even matches giving birth, so you have my sympathy. Sure hope you find some answers here.
I know the pain can be squashed with either meds or opium. I know it's a band-aid approach, but you gotta survive.
One member was concerned about taking oxy and being constipated. So he chose no oxy. Weird choice. Pain sucks. If you can manage it effectively to get you through the day, then try it.
I used oxy while recovering. It served a purpose. Was done with it. Didn't care about output.
You do what needs to be done. Keep us posted. We got you.
Gracie Bella
Jan 25, 2025 8:31 am
I do not have any of these things, but I have had my ileostomy for somewhere between 25 to 27 years now. I have had several ileostomies, due to bowel obstructions and my stoma herniating, so I hope and pray that my fourth ileostomy will behave itself, as I will not survive another operation.
I do completely understand about pain; as I suffer from both acute and chronic pain. And I sympathize a lot!
I can no longer eat solid food, as any food just gives me too much pain, and anything that I eat comes out completely undigested; so in order not to have to deal with constant issues of malnutrition, I have to drink 6 bottles of chocolate Fortisip, which is a ready-to-drink, high energy, nutritionally complete oral nutritional supplement. Which often can get rather boring, however, I really don't like any other flavor other than chocolate, so I try to make the best of it.
Best wishes from New Zealand,
Gracie
SusanT
Jan 25, 2025 1:30 pm
If your nutrition is getting compromised, TPN may be a good option.
If your doctor doesn't want to put you back on TPN, maybe a low residue diet plus supplements like Ensure? Have that in the back of your mind as an alternative in case you need it.
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Marjatta
Jan 25, 2025 6:04 pm
I am so sorry you're going through this hell, Kerry. Being a chronic pain sufferer myself, I know how depressed and desperate one can feel. It's just not right - not being able to enjoy life. I'm sure if you let your medical team know how bad things are (no stoicism here), they can help. But sometimes, unfortunately, it's a trial and error situation until they get it right.
Thinking of you, and praying you'll soon get some relief. Please let us know how you make out!
M
xo