Post Ileostomy Surgery - Help Please

[hopeful]

Had the surgery on July 29th - 10 days ago. Taken out all of colon, rectum, and part of the ileum.

Was send home on Thursday.

Quite depressed right now. Some of the staples got infected - small abscesses formed - painful.

I have a dreadful pain under my ribcage - below my right rib in the center. It just seems to get worse day by day. If not for that pain I wouldnt need painkillers. Tylenol (paracetamol) does nothing for it. Oxycontin knocks me out - I hate it. Any better ideas anyone?

Was given useless stoma bags by the temp stoma nurse - and stuck with leaks... waiting for a new supply... what a mess....

The bottom of the stoma is very close to the skin, thus leaks much more. Does the stoma eventually adjust itself and protrude some more? That would be welcome for me, but I am worried.

Thanks so much for any input. I guess I was expecting to feel so much better and I don't yet see the light at the end of the tunnel.

Thankfully I am able to sit down without real discomfort - despite the stitches in the backside.

hopeful

 

[CDDad]

Hi Hopeful,
As you can imagine and are experiencing, the first few weeks are very hard. I remember having all sorts of pains and issues for a few weeks. You never know if something is serious, so do call your surgeon to check. I know I did and most turned out to be nothing.

I know what you mean about the Oxy, I just survived on Tylenol when I arrived home and it was hard. Maybe you can ask your doc for Tylenol with codeine to get something a bit stronger that won't knock you out. Or some people prefer Vicodin (Hydrocodone).

What brand / type of Ostomy bags are you trying next? I use Hollister New Image 2 piece and really like it. Basically it works for me to live my life so what more can I ask for? Well, there are a few things...

I'm not sure if your ostomy will change position. If it does not protrude much, you may need convex wafers - that is the solution for that situation as far as I know.

Keep the hope - I was as low and in such pain after my surgery in April 2010 as anyone can be. It was so hard to imagine being healed. Now, just over a year later, it's all a memory and life is good.

 

[Terriernut]

Hopeful, I'm sorry you are still in pain after the surgery, but it will take some time to get back to normal. Your body has truly been put through the wringer. As for the pain, you definetely need to tell your Dr about it. Keep a good eye out for everything and keep on top of it. I'm 6 months out from surgery now, and it took me a good 3 1/2 months to be back to normal. Its a MAJOR surgery. Your body needs time. Please be patient, it will turn out ok in the end...I promise!! I agree with Joe (he's great!) a codeine based product would be something for you to try. I would hope though that they figure out what the cause of the pain is. It could still be some built up gas as well?

Your stoma will continue to change as time goes on until it settles. But I think you should try some barrier rings to help. Think of it as a 'push up bra' for your stoma! :ybiggrin: If you can ask your supplier to send you a box? They are like moldable rubberish rings you mold around your stoma. They are a life saver! Tell them what your stoma is like and they will send you something to try. Dont hesitate to ask us for assistance here as well.

What products are you using for your bags for now?

 

[hopeful]

Thank you Joe and Misty. Good to hear....

I just had a neighbor doc over (an old timer - 80 y/o). He checked me and said its a referral pain from the staples. He injected some lidocaine next to the staples and I had immediate relief, so he took out 3 staples and put some special adhesive tape instead. The searing pain is mostly gone - wow - what a difference!!!

I am using Hollister - but I don't have the right supplies - the stoma nurse at the hospital was on holiday and I was not properly taught how to handle it. I am seeing a stoma nurse tomorrow - hopefully will get this sorted out then. Had 4 leaks already in last 2 days, so can't wait to resolve it.

Thanks again

hopeful

 

[Terriernut]

So glad you have had some relief from the pain. I had some imbedded staples and oi vey did they hurt. Great you have a Dr nearby!!!

Also, WONDERFUL that you are meeting with your real stoma nurse. They are a godsend. And they can do wonders for your self confidence. I hope you will see them on a regular basis for the next 30 days.

Please keep us posted, we worry!!!

 

[Kris]

The stoma nurse will be a huge help. Also try the Holister convex wafer. It helps push out your stoma. The rings are great too. I use both. My stoma is a little short too. The first few weeks are hard, so hang in there. Don't worry about being knocked out by the pain meds. You need the rest anyway. It takes time, but you will be feeling great before you know it. Just keep an eye on any possible infections. I didn't have any, but alot of people on here did. Getting my stitches removed around my stoma was a huge help too. It's amazing how painful they can be. Stoma nurses are great, so continue to get their help as long as you can. Your stoma will change size and shape the next few weeks, so you will also be trying to deal with that. Good luck!

 

[LOSTnut]

Hello hopeful,

well, there are a lot of things that can go wrong in the beginning. I am glad for you that you will have a consult with a stoma nurse. I never managed to get one and labored through it myself .... well, with the help of the stoma-gang here on the forum.

My stoma is uneven and nearly flush with the skin at the bottom side of it. I use half an Eakin ring to push that side up and convex wafers.

Another mistake I made at the beginning was using wipes, which is a big mistake cause it breaks down the adhesive. Water only ... and then dry the skin really, really good.

I went through all the major manufacturers before I finally found the application that works for me now. There is a thread on here "Ostomy Supply Review" that might help you out, too.

Hope I have been of some help -- good luck!

 

[hopeful]

Thanks Heike. I guess I am still under the shock of it all... I will look up the thread you suggested.

 

[Terriernut]

How did your appt go with the stoma nurse hopefull?

 

[hopeful]

Stoma nurse was good - so far so good, but still needs some fine polishing. My stoma is close to the incision, the staples etc, and there are some abscesses there, so the who thing is somewhat painful and uncomfortable. Its been 24 hours since she applied the convex flange (Hollister) and am hoping it will last till tomorrow at least. The nurse was a Hollister nurse, so obviously she showed me their stuff only.

Later this week I should see an "independent" nurse so will see what she has to say.

My output is very liquidy and at night really fills up fast. She told me that Hollister has or will shortly have a bag with a little drain pipe at the end which can be attached to a collection bag (on the floor) for the night. Sounds interesting...

I still can't stand up straight, I am very hunched over. But I had some staples taken out today so there is less pain.

 

[Terriernut]

The liquid output is normal for us illeostomists. Especially in the beginning. You could try not eating several hours before bed to have less output at night.

My incision wound was very close to my stoma as well. Remember stoma gets priority, appliance under the dressings.

Did the stoma nurse suggest a barrier ring, or a powder for the absesses?

 

[LOSTnut]

Really? Never heard of a stoma nurse that is promoting only one manufacturer .. but, oh well, Hollister is a good product and I used it in the beginning until I heard about the Convatec moldable convex wafer.

I still have to get up at least 3 times per night but that is more because I live in Southern Arizona and cannot not drink because of the heat and I dont want to risk dehydration.

All the manufacturers are happy to send you samples and they usually do it rather quickly. Once you get the technicalities of applying it down some more, you might want to experiment to find out what you really like.

When is the appointment with the "independent" stoma nurse?

 

[Terriernut]

My stoma nurses were contracted to Dansac. I had to fuss and fume to get them to recommend other products.

 

[LOSTnut]

I stand corrected!

Since I never had the "privilege" of working with one, I did not know that.

 

[hopeful]

The surgeon told me that if stoma output is more than 1 liter in 24 hours, I must use Imodium or drink sparkling water (soda water for Europeans) to slow it down.

Any idea why sparkling water would help??? Does it work??

 

[LOSTnut]

Another new one on me. I drink sparkling water regularly but haven't noticed any slow-down -- now I will be watching though.

I just drink it because it has no calories but lots of natural minerals and low sodium -- well, at least the brand that I drink.