Ileostomy/Hernia?

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gutenberg
Well friends once again I'm in need of information. A little background, two months ago I had to buy new jeans so I got them a couple of inches larger than normal, next I put on my braces to keep my pants from falling to my knees. As i sit here now, no braces, no belt, top button open. This started about two weeks ago after getting some sharp pains above and below the stoma and a circle about six or seven inches in diameter and has swollen outward about an inch and a half, hard to tell. can anyone tell me if that's the way a hernia starts or could it be something else. Like to hear from anyone who has gone through a hernia after an ileostomy, thanks in advance. Ed
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Past Member

Ed, a large percentage of ostomates develop hernias... I think it's over 50%. Mine is not so large as to require surgery (as per my doc), but the first thing I noticed was a "hard" spot near my stoma... and it progressed from there. As you noticed, it does require a slightly looser pair of britches. I would watch the heavy lifting and see how things progress... I believe a large percentage of repairs also fail (over time), so I would advise waiting till it gets to be trouble before I got too concerned over it. Remember, I am not a doctor... though I do enjoy pretending to be one on occasion!!!...

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Gus

You're a legend, Doc. Hehehe.

I have numerous hernias, Ed, but none presented like that. What did present was the buildup of pus before a weeping sinus erupted. It might pay you to get it checked, but Doctor Nick might be right. Lmao.

Sorry, MMSH. I couldn't resist.
gutenberg
Thanks guys, I have an appointment Monday but wanted to gather some information and try not to look like ass. Of course I brought this on myself by doing some rather heavy lifting a few weeks ago, too damn independent to ask for a little help. As far as surgery goes, well it wont go anywhere unless something really drastic happens. From now on I'll ask for help rather than risking another OR visit.
TexasGirl

Ed, I've got a hernia next to my stoma that seems to go halfway around it... if that makes any sense. I have felt what you have described, sharp pains and a tingling feeling too. My ostomy nurse told me that meant it was growing. My surgeon told me that at this point surgery is not necessary. Even though it is hard for me to ask for help, I HAVE learned I will feel better physically if I do so. Hope things go well for you. Debi

 
Words of Encouragement from Ostomy Advocates I Hollister
lottagelady

Ed, mine is huge, can't really remember what it was like when it started except that it was giving me abdominal and back pain - it is now 'as big as it gets' and I can feel the ridges of my bowel on my right hand side. The strange thing is, I have been getting 'flutterings' deep down in the center of my abdomen at the front - for the ladies it feels like the first quickenings of a baby when you are pregnant - anyone else have them? I can also tell if I've done too much as it will get bigger, the bowel seems to shift about inside and I get abdominal pains.

It is also giving me a lot of nausea at the moment, tends to be all day every day over the last few weeks. I suspect it may need seeing to sooner rather than later - hope this new surgeon in London hurries up and does the fistula tests as I'm not too sure this hernia will hang on as it is for too much longer.

Txgirl

Rachel, I'm worried about you. Do you have a doctor's appointment soon?
Loves ya, Sassy!

lottagelady
Um, not exactly - I am going to see GP early next week but still waiting to hear from London about these tests I need to have - one surgeon will be doing fistula but I think she will not do hernia but will pass that one back to the previous surgeon. However, not sure if the hernia op will wait that long- I suspect something is brewing up for a hospital trip in the not too distant future!

Thanks for asking Hannah..... and what about you?

Wish I felt a bit more 'sassy'! Loves ya too xxxxxxxxxxxxxxxxxxx
Txgirl

Oh, I hate to hear that, it sure doesn't sound like you will make it that long.

I am waiting for the gyn doc to call me. She put me on a strong antibiotic for now and pain meds. She is going to get the CT results from the hospital and get with my other gyn doc, and then they will figure out what to do.

Xoxoxo, have a great day...and you are sassy! LOL

Past Member
My first posting on this forum (I think).
I too have a hernia to the right and below the stoma. It "grew" quite quickly, but seems to have stabilized and it gives me no real discomfort. However, at my one but last appointment with the surgeon, he said he may have to operate should it get any larger, but meantime prescribed an elasticated body belt. At my last session with the surgeon, he just grunted and said "You needn't come back again unless it gets worse!" Meanwhile, my stoma nurse told me that the surgeons don't like doing the hernia operation because it frequently results in infection.

Incidentally, I live in France and have found no other English speaker with a stoma and whom I could discuss our various problems - my French not being quite strong enough to speak in minute detail.

So, my questions are, and they may already have been asked on this site:-
1. How common (%) are hernias following the fitting of a stoma?
2. How effective are consequent operations?
3. How does one decide if an operation is necessary?
4. Anyone else been prescribed a belt support - and with what thoughts and results?

Thanks in advance.
Past Member
My first posting on this forum (I think).
I too have a hernia to the right and below the stoma. It "grew" quite quickly, but seems to have stabilized and it gives me no real discomfort. However, at my one but last appointment with the surgeon, he said he may have to operate should it get any larger, but meantime prescribed an elasticated body belt. At my last session with the surgeon, he just grunted and said "You needn't come back again unless it gets worse!" Meanwhile, my stoma nurse told me that the surgeons don't like doing the hernia operation because it frequently results in infection.

Incidentally, I live in France and have found no other English speaker with a stoma and whom I could discuss our various problems - my French not being quite strong enough to speak in minute detail.

So, my questions are, and they may already have been asked on this site:-
1. How common (%) are hernias following the fitting of a stoma?
2. How effective are consequent operations?
3. How does one decide if an operation is necessary?
4. Anyone else been prescribed a belt support - and with what thoughts and results?

Thanks in advance.
Gus

This is your second post, Majic. Lmao, it's okay though. I have 2 posts to answer now.

1/ I think everyone ends up with a hernia at some stage; it just depends on how bad it is.

2/ Same as all previous surgeries, if you cough you can pop a hernia.

3/ Mostly, you don't make the decision. This comes about when you have a check-up with your gastro/surgeon/GP. You can explain how it's affecting you, but they make the decision.

4/ In Australia, we can get 3 support belts a year. Kinda cool for that. This has to be the best place on earth to live.
lottagelady
Hi ....

  1. Very common, unfortunately, as the stoma is pulled through your abdominal muscle, it creates a weakness there....... agree with MMSH.
  2. Yet to find out, also unfortunately having read someone's previous post about post-op infection as that always hits me!
  3. It hurts! Or looks as though you are 8 months pregnant as mine does! Or you get lots of abdominal symptoms - apparently the bad taste in my mouth I have currently is gastric reflux. When I cough or sneeze, it increases in size.
  4. I have one especially built for me by the NHS in the UK - none of the ones on the market are 'man enough for the job'! I can barely stand without intense pain in my back/shoulders/neck/legs and abdomen without it - the only time it comes off is when I am in bed. It is very sexy as you can imagine, 5 large Velcro straps and almost 12" in depth .... Ann Summers were after me for the design, but I have kept it to myself so as to be unique!
Hope that helps a bit?

Rachel xx
Past Member

Thanks for your very helpful replies.

Just one comment regarding the belts. I have one already and it's not too bad, but not quite as Ann Summers as Lottagelady's. Here, in France, we can have two per year, so perhaps I could be tempted to emigrate to Oz in order to get the third one.

gutenberg
Dammit Rachel you got the rest of us more worried than you seem to be, this little thing I just developed is nothing in comparison. When you have an itinerary set up PLEASE let us know, I'll try to remember a prayer especially for Ya. OK Ed xoxo
lottagelady

Oh Ed, thank you! Let's put it this way, reducing this with the flat of my hand wouldn't be an option! It is pretty big .... not sure how/when I can get it resolved as I really need some info from the other surgeons in London which is proving to be typical of the NHS - like never heard of me at the last call! Hopefully, I will get some more news Friday on that front ... mind you with all this reflux I am getting, probably have a hiatus hernia as well now? (Apparently, these are more common if you wear tight belts!) Can't win, can I? Ha!
gutenberg
Just had an idea Rachel, get yourself a pair of boots with Velcro bottoms, get some Velcro for the ceiling, climb a ladder and hang upside down and maybe everything will fall back into place for you. Then again I just took my daily medications. If It works let us know. OK
lottagelady

Hi Ed, sounds like a good idea, will have a go tomorrow and let you know! xx

Past Member

During the appointment, they will try to have you recreate the episode. They'll poke around to see if they can feel the muscle give in.

My doctors could never find my hernias (4 surgeries), so I did look like an ass. Even had a CT scan and couldn't see it, but when I had to go in as an emergency because the bowel got caught, then they opened me up and found 3 of them.    So be prepared to look like an ass. Sometimes they hide like a needle in a haystack.
lottagelady
Dear Ed I write this note to you to tell you of my plight
For at the time of writing it I'm not a pretty sight
My body is all Black And Blue, My Face A Deathly Grey
And I Write This Note To Say Why I Am Not So Good Today

Whilst Working On The Velcro boots first some mud I Had To Clear
But banging them against the wall Was Not A Good Idea
The neighbour Wasn't Very Pleased He Is An Awkward Sod
He Said I ought to scrub them first which I found very odd

Clearing All This mud By Hand It Was So Very Slow
But I scrubbed the boots and attached to them some really strong velcro
But In Me Haste To Do The Job, I Was Too Blind To See
That a pair of Velcro boots would just not stand the weight of me

I went to get a ladder but my legs they felt LIke Lead
so Clinging Tightly To the rungs I Started Up Instead
I Shot Up Like A Rocket, And To My Dismay I Found
That Halfway Up I Met a bloody spider coming down

Well The spider caught Me Shoulder As To The Ground It Sped
And When I Reached The Top I Banged The ceiling With Me Head
But I Clung On Tightly Numb With Shock From This almighty Blow
While The spider ran across the floor some 7 feet below

When I reached the top I spun around, my boots stuck to the roof
but as I hung above the floor I feared I knew the awful truth
the Velcro wasn't strong enough, my body racked with pain
And Halfway Down I Met The Bloody spider Once Again

Now The Force Of This Collision Halfway Down The ladder rungs
Caused Multiple Abrations And A Nasty Case Of runs
But I Clung On Tightly To The thing As I Fell Towards The Ground
And I Landed On The slimy shite my bag Had Scatterred Round.

Now As I Lay There On The Ground I Thought I'd Passed The Worst
But The boots fell off the velcro Hit The bag, The Bottom Burst
A Shower Of shit Rained Down On Me I Didn't Have A clue
As I Lay There Bleeding On The Ground surrounded by bloody pooh

The other boot Being Heavier So Started Down Once More
It Landed Right Across Me As I Lay There On The Floor
It Broke 3 ribs And My Left Arm And I Can Only Say
I Hope You'll Understand Why I don't feel so good Today
gutenberg
All I can say, what fool ever gave you that idea. But your story was indeed a fine piece of work, me thinks you should stick with a more cerebral method. Ed
Past Member
1. How common (%) are hernias following the fitting of a stoma?

Surprisingly common. My gastro nor surgeon informed me of the amount of post ileo surgeries it would take to maintain healthy output. I'm still ticked about it and it's been 14 years since the big surgery.

2. How effective are consequent operations?

3 out of my 4 surgeons all have differing opinions. The first 3 all believed their hernia repair would do the trick. The last one is a hernia specialist to an NFL (Football) team. He said it could still fail given how many abdominal cuts I have had to the wall over my lifetime. He opened me up and down all the way, scraped out the bad mesh junk from the previous hernia surgeries and rebuilt it with cadaver tissue. He said if it didn't work, then I would need a revision.

BTW, ask your doc if he uses the mesh or cadaver tissue. Cadaver tissue has no rejection, doesn't cause scar tissue and reduces the adhesion rate. However, keep in mind that just opening our gut can cause adhesions as well.

It worked like a dream for 4 years. I was kayaking, rock climbing, and doing all sorts of crazy $#!T. Then two years ago, I was sitting in my chair at a conference. I sneezed and found myself writhing on the floor screaming in pain then being transported to the local hospital. Of course, I didn't let them do surgery since I was out of town. That was 2 years ago. I am not ready for the revision so I am just careful for now.

3. How does one decide if an operation is necessary?

The smaller ones can be more dangerous because the bowel can get caught in the muscle wall. This is life threatening. If the bowel can't be pushed back through in a short of amount of time then the decision will be made for you. Emergency surgery. If it's larger then it's annoying but rarely life threatening.o:p/o:p

4. Anyone else been prescribed a belt support - and with what thoughts and results?

Gosh, I have a drawer FULL of every kind of hernia belt. I'm only 5-1 and 100 lbs. Most them are WAY TOO BIG for little ole me. I have pediatric ones as well. I finally found that Fredericks of Hollywood has a line of waist cinchers and corsets that run about $30. They are light, snap, breathe, reduce the sweating, and look sexy! I have to wear it to bed cuz turning over or sleeping on my side causes mine to act up. That bulky Velcro kind would require me to cut it to the point that I wouldn't have the Velcro part to snap it to. I also use an 8 inch Velcro ace bandage to wrap around my abdomen when exercising and swimming without being noticed.

Also be careful not to get too bloated or full. That can make you uncomfortable.
gutenberg
IMPERFECT: After reading your well articulated post, I'd like to relay how my visit to my GP went, pants down, looks at hernia for about three seconds and turns away, as he sits down he tells me surgeons don't want to do surgery around stoma, writes up my regular prescriptions and that's it. No mention about a hernia belt, no follow up for a month and that is for prescriptions, have a nice day. In any event I had a couple of hernia belts on order before I had even seen him. Its a good thing this isn't bothering me other than having to buy new, larger jeans or I would have insisted seeing a surgeon, but man that would be a last resort. Anyway the hernia is really far down on my list of problems that need taken care of and with this sort of examination I won't be expecting a damn thing until it becomes critical, as in the last three surgeries. Good thing I know from these forums I'm not alone. Have a good day, best, Ed
Past Member
Oh Ed,

You have such a good attitude.

I am disappointed with the doctor's lack of response - more than likely due to his lack of knowledge maybe? Too bad he didn't say, "Let me do some research and see what your options are."

I think I'm gonna invite my docs to use this site as a learning tool. We aren't just learning from each other but they can learn from us too!!

I am gonna try one of those Nu Hope belts. I like my little waist cincher but might as well try the ostomy-hernia belt with the hole in it for the pouch.

It's acting up today. No telling what I did...probably rolling over in bed the wrong way. So I'm chillin on the couch.

Thank you for your response. Hang in there!
gutenberg
Imperfect, just had to reply. What a hell of an idea, get doctors to visit this site but you know 99.9% of them would never admit they need a broader cross section of information. For over six years I let myself wallow in misery because all this happened to me because of a surgeons mistake and nowhere else but on this site was I able to come to terms with that mistake, and certainly when I read your's and other blogs I came to realize how close I came to extinction, so it is with humility I thank you and others for helping me through this shit, just had to throw that one in there. Ed
Texas Girl

I too have a hernia and yes, I have bought a lot of bigger clothes. I went from a 16 to now a 20. My hernia is big, but I really don't know how big it is as it gets. My gyn doesn't seem worried, but I sure hate to be seen in public. I look like I am a couple of months pregnant. I have a belt, but I don't use it. Maybe I should start?

lottagelady

Hi, I would say I look about 7/8 months pregnant without my support on (although only on my right side where the hernia is), with it on maybe about 5 months!

If you have a belt, I would use it. It only takes a sneeze or cough or for you to lift anything a bit too heavy or in the wrong way for the hernia to increase, which I can pretty well say it will unfortunately..... Rachel xx

Texas Girl

Hey Lottagelady, well I only look pg on the left side. My doctor tried to tell me to have a sense of humor about it. Name it and introduce it to people as my friend. You can imagine what I told my doctor. LOL I see you on here a lot talking to people. So yours sounds so much bigger. May I ask, do you or have you irrigated before? I haven't and don't know much about how to do it, and I'm a little scared. But I was told you couldn't irrigate with a hernia.

lottagelady

Hi Tammie - I have an ileostomy so I cannot irrigate anyway - not sure about irrigating and hernias, but I bet there will be someone here who will be able to put us right! Rach xx

earth523

After 10 years with my stoma on the right side of my body, I developed a really bad hernia around my stoma. The muscles weaken from the initial surgery and it's very easy to develop a hernia. I had to have surgery again and they moved my stoma to the left side. I can't say I do anything special to avoid hernias...such as not lifting heavy things, moving furniture, etc. But I am aware of it. If you let it go too long, it will cause more problems and sometimes blockage.
Shari

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