Severe Pain in Ileostomy: Seeking Advice

Hi, I am really fed up with myself just lately. I am in pain every day to the point I can't stand, and I am vomiting a lot more than I do with my cyclical vomiting syndrome, which seems to have calmed a bit after I had two surgeries for perforated bowel. That's why I have two stomas. Any advice, please, other than A&E?

To me, this sounds serious. I think you should see a doctor urgently. You may have a blockage or another issue.

Hey there, I agree with Susan; you need to go.

I would speak to your consultant/GP or a 111 nurse/Dr.

I concur with everyone else; you should not settle for pain like this and deserve some answers.

My Ostomy Journey: LeeAnne | Hollister

Thank you so much. I have been in a similar situation once before with it. I got put on fluids and morphine. I had a scan at Christmas because it was bad then too, and there was no blocking or obstruction. Now I am waiting on a gastroenterology appointment. I am under a different hospital with a professor, so I am going to call his secretary to get an appointment with him instead. They know my history better, and I am trying to keep it positive. You all help. Thanks 😊

Just be careful with waiting. If it is serious, you don't want to wait too long and end up having emergency surgery. Better to catch it beforehand.

If you have bad pain, you should go to the ER or check with your doctor right away. It could be a blockage; it could also be another problem. You don't want to let it go too long. Pain is not good to live with, and you don't want to risk further problems.

Hi, I got a GP appointment later. I have swelling under my Ronnie now. Reggie is fine, luckily. If both were playing up, I would have admitted myself, but I have a funny feeling I'm going to er 🙃 xx will update later.

Good luck with your appointment. I hope you get some relief.

Well, I got oral morphine for the pain and was told to go to the ER if it gets worse because I am already waiting on appointments. 🙃 Luckily, I have lived with chronic illness before surgery and learned to cope and know when it is time to take myself to the ER. Thanks for your concern. xx 🙂

Go to the ER now!

As someone who suffers from both acute and chronic pain, as well as someone who'd rather die before having to go back into the hospital, I think it is important to (a) find out why you are in so much pain and (b) if you can be given something for your pain.
When I first got very ill, I was repeatedly vomiting, plus suffering from malnutrition; it had some very serious consequences.

If you are in so much pain you can hardly stand, you really need to get some help, as everyone else has pointed out to you already.

Don't put off waiting too long before seeking help, because our bodies were designed in such a way that if we are in a lot of pain, there is usually a reason why.

Know that we care, though, and let us know how you get on!!

Gracie

Thanks for your reply. I have been in touch with my stoma nurse and the doctors. My nurse is absolutely brilliant, but the doctors were just like, "Okay, we're not sure." I had a scan and MRI; no blocks or disruption. Apparently, I have SMA now as well, superior mesenteric artery syndrome. I already have cyclical vomiting syndrome; I have had that for 28 years. Yes, I have already been at the stage of malnutrition and am still dehydrated, but I am waiting for a hospital appointment now. I am going to get onto it because I don't think I can wait that long.

I'm sorry this is not yet resolved. I'm glad there are no blockages, but definitely listen to your body about going to the ER. You deserve to be comfortable.

Hey Kerry, if you're severely dehydrated and malnourished, you need to go to the ER. You need to get IV fluids for the dehydration. You don't want to become severely dehydrated and end up in kidney failure on top of it.

That's what is worrying me. I have kidney disease 3a, so not great anyway.

So why not go to the ER? Especially if you know that you're dehydrated.

Thanks for your concern. I have been for some IV fluids and still feel crap. I had doctors again today, took blood and other stuff to see what the outcome is. Can't rush the gastro appointment, apparently. 😐

This must be so difficult. I'm glad you've gotten some IV fluids; that should help prevent a second problem. I hope the gastro team sees you soon.

At the moment, yes, it's a bit difficult. I feel like I'm in a circle going round and round, but I've been here before, so I know I can get through it. Hopefully, I'm just sick of being so tired now and not being able to do much. xxx Thanks for the love. xx