Stoma growing rapidly, seeking advice on next steps

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keepers51
Oct 04, 2021 12:14 am

Two years ago, I had a colostomy and my stoma was formed. It was initially recessed and measured about 25mm in length. The ostomy nurse at the hospital set me up with a Hollister convex two-piece. The cut-to-fit barrier fits up to 1-1/2". Slowly, the stoma began to grow, and I learned to measure and cut to fit with every change and have had great success. No leaks, diet adjusted so output is pretty well formed and controllable, and the convexity has allowed room for the growing stoma to have no problem in emptying into the pouch.
This past year, the stoma has grown more quickly to the point I have reached the edges of the 1-1/2" cut-to-fit and have now gone to the next size Hollister convex barrier, which is 2-1/4". This may be normal or acceptable, but I'd like some feedback from experienced users on the sudden growth and at what point I should be alarmed. This first 2-1/4" barrier I have applied, I cut right at the 1-1/2" mark.
Not only has it grown in opening size but in the amount it is protruding, which is proportional. I have thought about ditching the convex barrier in favor of a flat style, but it isn't something that seems to work for my protruding stoma as the face of the bag on the flat system smashes tightly atop the stoma, and I'm hesitant to go through the whole pancaking, smearing mess that has the potential to produce.
So, what do you think? Should I feel concerned about the growth spurt?

Ritz
Oct 04, 2021 12:39 am

Jeepers Keeper, I personally would yap to your surgeon about the growing wider. Mine has also grown a bit wider, but mine has grown outward. I raced to my doctor and he said I have a prolapsed stoma. I hope mine doesn't keep growing outward (it's not yet visible under my clothes) but he has seen some that grow out to be a Pinocchio.
Good luck, otherwise I don't know what to suggest... call your doctor or Ostomy Wound Clinic.

Good luck, Ritz

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Lily17
Oct 04, 2021 12:43 am

Good evening, Keepers

All wisdom from my medical team said that the stoma would change in size only for the first 6-8 weeks or so after my ileostomy surgery. Not a word about the potential for increasing size after even one year, let alone two.

If I were dealing with this situation, I would call my original surgeon's office tomorrow, explain the issue, and make an appointment for ASAP. I would also request getting onto your surgeon's "cancellation list", as you may find during this pandemic that you are unable to get a set appointment for another 2-3 months from now. A cancellation by another patient could be an opportunity for you to see your surgeon earlier than anticipated.

I hope that you are offered advice and opinions by other ostomates that shed light on your situation, and that what you are experiencing is nothing urgent or serious.

Update us all when you're able, Keepers!

Lily17

TerryLT
Oct 04, 2021 7:59 pm

Hi Keepers, when I had my colostomy, I experienced a prolapse, which is when the bowel protrudes beyond the stoma itself. This doesn't sound like what you are experiencing, as a prolapse shouldn't increase the diameter of the stoma. I did have my stoma increase dramatically in size and diameter however, but this was leading up to a serious bowel obstruction. Is your output still normal and are you still comfortable? Do you feel like you are constipated? If you answer yes to the first two questions and no to the third, it is probably not a serious issue, however, I would want to have it checked out with the ostomy nurse. Good luck and let us know what it turns out to be.

Terry

keepers51
Oct 04, 2021 10:01 pm
Reply to TerryLT

Hi Terry, delgrl525,

Thanks for the reply. I know now it is a parastomal hernia and not something I need to do anything about - yet. It's not causing any problems so I will begin doing some core exercises and keep a watchful eye on the problem. The formation of a stoma is actually a deliberate breach of the muscle wall and any further weakening of the wall opens the potential for material to push its way out if possible so I need to try to strengthen those muscles with targeted exercise. These past two years I have been careless with pushing and pulling and lifting things and sitting way too many hours idle.

Hope your recent surgery has been successful. This site is indeed filled with caring team members.

 
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Newbie Dana
Oct 05, 2021 1:47 am

Get a belt before doing core exercises!!! I cannot emphasize this enough. My doctor made the mistake of telling me to just do what I felt up to, so I did. This included push-ups, sit-ups, core exercises, etc., trying to get back into shape after my surgery. I now have an enormous peristomal hernia, and he forbade me to do any more. And now I look like I'm about 4 months pregnant on one side.

Go slowly, always use a belt to support your existing hernia and stop it from getting bigger. Talk to your ostomy nurse or your surgeon - a frank discussion of what exactly you plan to do exercise-wise. My doctor thought I was going for a few leg-lifts, not the full Core 7. Not communicating properly at all!

Caz67
Oct 05, 2021 6:40 am

You can also get some pants for the hernia which gives great support. Bit of a passion killer but they do the job xx

keepers51
Oct 05, 2021 6:57 am
Reply to Newbie Dana

Got it. Thanks for the reply. It sure makes sense.

keepers51
Oct 05, 2021 7:00 am
Reply to Caz67

Thanks for the reply Caz67. I'll put it on the list of things, but I can only imagine there is a pretty big expense for pants like that? Budget is pretty small.

TerryLT
Oct 05, 2021 7:44 pm
Reply to Newbie Dana

Hi Dana and Keepers, there are some very gentle core exercises that you can safely do without a hernia belt, just to get you on your way. They are meant to safely strengthen the abdominal muscles gradually, so that you work your way up to the heavier ones. Here is the link: https://meplus.convatec.com/articles/meplus-recovery-series-phase-3/

Terry

Ritz
Oct 05, 2021 10:21 pm
Reply to TerryLT

Terry... Absolutely right. I was given the go-ahead slowly after my ileostomy, and all my guts were totally healed. It took my body over a year before I was shown how to do sit-ups and leg lifts.
Patience is the key to longevity.

newnormal
Oct 06, 2021 10:13 pm

Thanks for the link to the exercises delgrl525! I have an ileostomy and it's getting fatter too. I also have a growing parastomal hernia which is causing a lot of the irritation. I will be seeing the doc next week about a hernia belt. Hopefully that will help and I can do some core exercises. Wow, suddenly learning so much about parastomal hernias! Thank you! The docs just send you away without any info.

Caz67
Oct 07, 2021 2:58 pm
Reply to keepers51

I'm not sure exactly how much they cost. I got mine free through our NHS. I'm sure there will be some on eBay or Amazon? Xx

Justbreathe
Oct 23, 2021 12:39 pm
Reply to newnormal

So true... docs just send you away with no info! Went to see surgeon yesterday as my ileostomy was beginning to look like a third boob! He writes a prescription for a hernia belt. Went to medical supply store with this prescription and was puzzled when he showed me the belt prescribed... it would totally cover the entire ileostomy (boob).... I said "no thanks" and left. Looked on Amazon and there are so many options... how does the ileostomy release output if it is totally being pushed in with no escape route?

Ritz
Oct 23, 2021 4:29 pm
Reply to Justbreathe

You should go to your Ileostomy clinic to get properly sized for a hernia belt with your Ileostomy. That's what I did. Your stoma and bag come out of the hole as not to obstruct your flow. You cannot just go buy one, you are sized for one and your supplier will bill insurance. My two of them cost zero dollars.
I do not like mine, but mainly due to the heat here in Arizona, otherwise they work well. Mine is a NuHope brand.

Good luck.

Justbreathe
Oct 24, 2021 12:33 am
Reply to Ritz

Thanks for the info...no ostomy clinic here but I do have a number for an ostomy nurse...will call on Monday and further investigate...thx again!