Dealing with PEG pain

[Navsu]

Hi all,
I just had a PEG put in yesterday for the first time. I've been on TPN on and off for about two years now and needed a break from it so this was my best option (I'm severely underweight and unresponsive to medication).

So my question to all of you out there who have gone thorough this is:
When does it stop hurting?!

I thought the procedure was relatively simple and would only cause moderate local pain, but the past two days have been real torture...
Knowing that healing is individual to all, what are your experiences getting over the initial discomfort? How long did it take? What are some things that helped with the pain?

thanks!

 

[PsychoJane]

I really don't know much about that procedure to be honest.

Do you have other symptoms, fever or anything? Do you have a follow up with the surgery team or whomever did the procedure?

My guess is report that pain to them as soon as possible. From what I read, if the pain is severe it is better to be safe than sorry. If it is not normal better get an advice as early as possible on that matter.

 

[Navsu]

Hi PsychoJane,
Nope, no other symptoms or fever, and the pain is getting much better from day to day. I have follow up in two weeks and my Doc is always available to me by phone if I need her.
I don't believe the pain is abnormal, just that I wasn't properly warned about it.
I'm mainly just upset being stuck in my parents care and would like to feel up to driving back to my own home as soon as possible.
Thanks for responding though

 

[Farmwife]

Hi sorry I'm just seeing this now. Did it get better for you?
I was wonder if the peg was to short? Not enough room between the stomach and abdominal wall?

 

[Spooky1]

Hi, I was in agonies after my peg insertion, was in hospital for four days. Back in within ten days, they put a bug in it! Was extremely painful. I would also suggest that if its the initial longer tube to start with that the disc on the inside of the stomach and the (in my case, triangular attachment) on the outside by the skin is apart enough as sometimes the specialist doesn't know what is comfortable. Can you bring the outer attachment further down the tube so that you can breath normally. I was doubled over and they didn't tell me the triangular bit pulls down.

Also, mine too 18 months to settle down, but I did have a bug in it. Now I have crohns in it and its agonies to change. It bleeds, has ulcerations and is strictured.

Most peoples settles down though.
good luck

 

[Navsu]

Hi Spooky,
Thanks for sharing, it never even occurred to me to stay in the hospital after the PEG insertion since it was an out patient procedure. Good to know I'm not imagining the pain to be worse than what it was
I think there is enough space between the two discs as now it's feeling much better and there is enough room for me to see the incision site and clean properly.
I'm sorry to hear you're experiencing so much grief with yours, I'm prone to infection so I'm really worried about the whole area getting infected and having issues as you describe.
Also- did you have yours changed to a "button"? if so what was that like?

 

[Spooky1]

Yes, I got my long tube, which dangled past my knees, to the low profile Corflo Cubby. It is so much better and is changed every three months.

I'm so pleased yours is less painful now.
best wishes,

 

[Spooky1]

Navsu, how are things now? I was thinking about you. Hope everything is settled down a bit now

 

[Navsu]

Hi Spooky, thins are better with the PEG. I'm finally getting the hang of using it and it seems to be helping, although I recently upped my dose of Modulen and all of a sudden I'm rushing to the bathroom much more...these things require a fine balance I guess.
Do you change your own PEG or does a medical professional do it for you?
Also do you use it for nutrition, medication or both?

 

[Spooky1]

Hi there,
I'm so pleased that things are better now. Yes, it is a fine line between overloading the stomach and getting it just right. I have my peg changed by my dietician and I use it for nutrition only.

I hope you have success with your peg and liquid food.

 

[Navsu]

This thread is really old by now, but in case anyone reads this here's a short update:

I ended up taking the PEG out after a year of agonizing pain and discomfort. The insertion site was always painful, inflamed and never healed. I was constantly leaking liquids out of the PEG site. It only really worked if I was using it exclusively (the best results were after 8 weeks of fasting and using MODULEN) but as soon as I started eating I was super sick again. The real kicker was that after I had it taken out, it took TWO YEARS for the hole in my abdomen left by the PEG to heal and close. That's two years of leaking whenever I had a drink. One of the worst experiences of my life.

 

[Spooky1]

I had MSSA in mine for 18 months, was agonies. I don't really get leakage although it does get inflamed so i use sudocrem which settles it down. Had mine since 2003. so sad yours is a problem. Can you drink the modulen with flavourings?

 

[Navsu]

I'm actually eating again now so I'm not reliant on Modulen, but it's a constant challenge navigating good/bad foods. Also emotional states effecting my ability to make good decisions is just another thing to deal with.
When I had the PEG no cream or ointment really helped:/
If I can't eat now, usually a day or two of just consuming electrolyte fluids and a few days of baby food settles everything.

 

[Navsu]

Not sure what MMSA is but I'm sorry you were in agony for so long!!! Are you getting all your nutrition from Modulen? Are you able to eat at all?

 

[Spooky1]

I still have E028Extra and bland foods too. It is always difficult to reintroduce foods, but if tolerant fine. If not, back to the bland basics.

what i had was similar to MRSA but very slightly different.