Recurring Parastomal Hernia Symptoms Post-Surgery

I had surgery in the Fall for a parastomal hernia. I've recently noticed another slight bulge(not as large as the original hernia) and have felt some pain, a kind of constant burning sensation. It's not debilitating, but I definitely feel discomfort. I've also noticed that I get a sharp pain right before there's a surge of effluence in my pouch.  This is very different from the way things were before my surgery. I've been in touch with my surgeon, and have a CT scan scheduled. I'm nervous because I spent 37 days in the hospital for what was supposed to be a realtively simple Hernia repair and developed several complications.  Is this normal? I've had the Ileostomy for 4 years and what's happening now is new.Thanks for any comments.

Oh my goodness - it does not sound normal to me  (I'm listed for that op in January. My hernia is 'as big as itgets' and they will have to move my stoma to the other side in order tofacilitate an effective repair, as well as doing a repair to my fistula- a bargain really, 3 ops for the price of 1!) I have been told that itwill need me to be in hospital for between 5 and 10 days depending onhow I am, 37 days must have been awful ..... Hope you get it sorted out quickly. Rachel x

I am glad we are talking about hernias.  I never thought much about them until my ileostomy and my hernia is the worst part of the whole procedure.  It is huge, somewhat like a basketball sticking out of the front of me.  I look like I am giving birth to it via C-section.  A large skin graft was taken from my thigh to give it more strength and a lovely pink color which makes it more noticable as if it needed more.  For my own entertainment I can watch my food being processed through my small intestine as it moves along.  I feel I am so mutilated.  I have had other surgeries previously........a gastroduodonectomy which rerouted my stomach into the duodonum of the small intestine due to adhesions; an appendectomy, and a colon resection in the sigmoid area.  I think my colon must be made of cheesecloth.  I live in fear of something else happening and not having enough colon to work with..  I am so scarred, unfortunately I am a "keloid-former" so I don't get by with thin white scars, but red ropy ones.  I guess this is my rant;  I hadn't planned on doing it, but if I were ever to be intimate I would have to wear a black plastic garbage bag covering me from ribs to near my knees.  Oh, by the way, I found my bellybutton the other day.....surprise! surprise, over above my left hip.  I wondered what that was.

I'm curemtly waiting to get my hernias fixed up. Got a heap of them plus 2 weeping sinus and incision hernia. Thats kind of amazing cionsidering I have mesh behind the incision scar. The Doc thinks I have ruptured the mesh. Damn bein a truckie

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HI all

slb, no, the pain is not normal.  I am  not sure about the burning .   As for the pain right before stooling, I am wondering if there might be a stricture (narrowing) , adhesions or kink at the muscle area where your stoma is coming through.  Good that you are checking into this and hope you let us know what they find.



Maryallison, I had a pt. that I could see the bowel action from the skin line.  The patient didn't think so, but to me it was rather fascinating....you have been through a lot!  I hope it was the last of your surgeries.

Words of Encouragement from Ostomy Advocates I Hollister

I love hearing from the medical community.  Thank you for your words and actually understanding that sometimes an ileostomy is more than just acquiring a "bag."  Most of us got here by enduring several medical situations.  I really am a positive person despite my "rant."  The last thing I would want would be for my words to discourage anyone for getting the treatment needed to resume his or her health.  Thank you for replying to my post.

Blimey, I thought I was bad - I have the same basketball, but as my initial ileo was done via keyhole surgery, at the moment I am unscarred - but not for long by the sound of it. Not something that had really occurred to me until I read your post - suspect I will soon be looking like a cross between Darth Vader and Frankenstein - not sure how we manage it, but it's good that we can occasionally laugh about it all ...........

Blimey, I thought I was bad - I have the same basketball, but as my initial ileo was done via keyhole surgery, at the moment I am unscarred - but not for long by the sound of it. Not something that had really occurred to me until I read your post - suspect I will soon be looking like a cross between Darth Vader and Frankenstein - not sure how we manage it, but it's good that we can occasionally laugh about it all ...........      


Dear English friend, it is always better to laugh than to cry.

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If you can't laugh through adversity then what have we got.

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What you have is a real pain in the ass, pun intended, and when it becomes intolerable. even to yourself, you know its time for an attitude adjustment. A good laugh can sometimes make you hurt but you know its a beginning. Ed

Bless you all - I have actually had a good cry about it all this evening since reading Mary Allison's post, am feeling a bit scared and lost at the moment with the impending surgery - I'm glad you are all here ..........

I hate to have made you cry.  I have had an email from someone else that was frightened by my post.   I want to be more positive now so as not to worry anyone.  Your surgery will be a success.....you will do well, and you have someone who cares about you just as you are.  We are here for you and we also care, a lot!!

Lottagelady

Its ok to be nervous and a little afraid. I,m sure everything wiil go well and you'll be back in here tellin us all about it,,

Oh, MA, it wasn't you per se that made me cry - it was just a catalyst that caused me to think of the enormity of it all.

I think this will be the 20th/21st time I'll have been under - with the others, I was very positive and not at all bothered about being there, even when they first did my ileo (it was a means to an end, not the end I am faced with now however!) - in fact, it has been remarked upon while lying in the anesthetic room waiting to go under, how good my BP/pulse was - better than theirs! But with each bout of surgery, I have gotten worse in some way, and as this op coming up is much more involved, it is now scaring me... In a former existence (that seems a long time ago!) I was a nurse (Learning Difficulties), so I do have some knowledge also, but nothing really in this field.

They will be moving my stoma to the other side so they can repair my hernia - I know that can mean months of trying to find the right appliances/products that fit, don't leak, etc. My hands are stiff with arthritis and from the fibromyalgia, I'll also have an abdominal wound to deal with, possibly two (never had one before as the last was keyhole and became the stoma) and my rear end/perineum will also be stitched. I ALWAYS get an infection post-op - I only have to sniff an antibiotic and I get thrush, and I am diabetic now so maybe healing will be impaired. Since my last op, my back and mobility are far worse as is my pain on a daily basis with the fibro - it is just me worrying about how I will cope both practically and emotionally about it all. My Mum, boyfriend (I hope - maybe he will be scared off, despite saying that he won't, things change...) and friend will all rally round, but I know what I am like when in a lot of pain, feel awful and am unable to do much - it drives me mad and I do get very grumpy, then I hate myself because of it.

I've had my cry, had more than 3 hours of sleep (unusual...), and have now had my rant so I am feeling much better this morning. Hoping this finds you all okay, and thanks for being there. My full membership has run out today, so I will not be able to send private messages - will pay if that becomes a problem, but at the moment will just see how it goes... Rachel x

My original Ileostomy also involved removing of the rectum and MONTHS of having my husband pack it with gauze until it closed properly. At the time it seemed humiliating (even tho' we've been married for 34 yrs.) but like everything else,  it's in the past. i then had to have the stoma relocated due to blockages, and I've had 3 hernia ops. Each time it seems more horrible than the last. My tummy looks like a battlefield, but at my age, who's looking? At this point I just want to feel good. I had my CT scan and I'm just awaiting results from the DR. Unfortunately, my veins kept collapsing so they couldn't use the contrast the Dr ordered. I hope the basic CT is enough to determine what is causing the pain etc. Especially to Rachel- I am not a "holy roller" just a lifetime Episcopalian , but I have found that prayer helps. I also have the love and support from my  Church  friends here in Pennsylvania. I will keep all my new "Meet an Ostomate" friends in my prayers as well! Anyway, I hope to hear from the Dr in a few days-keep your fingers crossed! Susan

[quote="slb2123"]My original Ileostomy also involved removing of the rectum and MONTHS of having my husband pack it with gauze until it closed properly.



Ummmmmm, think that is where I will need to go at some point too - who loves me enough to go there......?

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Can they not just remove the rectum inside and just sew up your anus?  I expect that the answer will be no, seems simple to me! So has that left you with what seems to be called a 'barbie butt'?

I am a registered nurse and have been looking after my patients with all kinds of stoma.
I am familiar with the complications which occures after stoma surgery and I have been trying to help to find a better solution to the issues such as, retracted stoma, prestomal hernia, prolapsed stoma and cut stoma, as I have promissed to my patients.
Now I have a new device which can help to over come these problems and I am looking forwards to see any hospitals's research unit is interested to test this device.  
Good luck to you all.

I had an emergency Colostomy done in 2007.....no problems - until now.  They diagnosed cancer in the uterus, so I've got to have a hysterectomy...so had a consultation with a gynocologist/surgeon/oncologist specialist.....She said, you have a hernia, did you know that?  I thought it was just a big belly, probably caused by the muscles they cut for the Colostomy....never even considered it to be a "hernia".  I thought hernias were little protrusions - like the size of a walnut, or a big one like an orange.  Mine looks like a little basketball, indented in the middle slightly by the scar of the Colostomy up and down along the belly button area.   The hysterectomy surgeon now says she can't close me up - until

the hernia is repaired -- they're planning to do it at the same time.  But from what I've been reading, it's no easy operation to repair the parastomal hernia - and it can easily re-occur with a good risk of infection from the mesh.  No pain. and so far it hasn't affected my pooping.  just thinking about the surgery is mind-blowing and worrisome.....but whatcha gonna do?  I've got to have that cancerous uterus taken out soon, before it spreads - and now this hernia.    What a bummer!