Back in June 2019 I came out of surgery with a stoma, which I was not expecting. I was very careful to listen to and take the advice about abdominal surgery; no heavy lifting or even lifting a kettle half full etc. About a month and a half ago I noticed my abdomen was sticking out more than usual and my stoma was swollen a lot of the time. A CT scan confirmed I have a hernia where my stoma is. I have no idea how I managed to get a hernia as I have been extremely careful. I have been sneezing a lot from the chemo drugs and the Avastin, and on occasions the sneezing has been quite violent and caught me off guard. I was not quick enough to hold/support my abdomen and that is the only explanation I can think of that has caused it.
Had I have known how easy it was to end up with hernia, just from sneezing or coughing, I certainly would have been wearing support garments from the beginning. I’m stuck with the hernia as the drs will not operate on it unless it starts to cause real problems. Also, I’m urrently having Avastin and if they to operate on the hernia, my oncologist would have to stop the Avastin, which of course simply cannot happen as it’s priority. A catch 22 situation.
I’m having to wear support boxers (like spanks) or a tight waist band over my stoma area and stoma bag, and on occasion this has caused ‘pancaking’ in my stoma bag which has then leaked. I’m now waiting to receive a support belt/waist band that allows the stoma bag to fit through a hole and a it on top of the waistband, although I’m not sure it will provide as good a support.
I’m rambling but my point is, those of you who have a stoma, I would advise you to wear support garments to prevent getting a hernia. Having a stoma and using a colostomy bag is enough of a hassle to manage without the added difficulty of then having to manage a hernia and trying to prevent it from worsening.
All the best.
Lisa.xx
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Meridian14
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Thank you for your detailed post I too had surgery in April 2018 with a stoma this has taken some time to come t terms with I a wondering how you managed. I have stage 4b OC
I take care of the stoma but I was wondering what suported products would you advise
My stoma nurse ordered me 2 boxers (tight boxer shorts) and two waistbands, size medium.
She ordered them through Fittleworth (my stoma bag suppliers). Fittleworth contact your GP practice and get a prescription. They then send you garments that are a make called Comfizz. I’ve seen the Comfizz garments on Amazon. There are three firmness levels; 1,2 and 3. I’m using level 2.
I have also ordered an Ostomy belt from Amazon. The Ostomy belt has an opening for the stoma bag to fit through. I’m hoping this may be better to use to avoid pancaking and leaking.
Meridian, The EXACT same thing happened to me. I was given no education about "living with a stoma" other than hygiene techniques and no lifting. Hernia became size of a cantaloupe and looked like a third breast hanging off my abdomen. Mercifully, the stoma was reversed and hernia partially repaired at that time. I now have a bulge the size of a smashed lemon.
Good to hear that you had your stoma reversed and the hernia is at least a bit smaller. How have you found the reversal... does it give you any problems? What bowel surgery did you have initially.?.
I think I had a Hartmans, I need to double check because my surgeon said if I get to NED only then will they be able to reverse the stoma. But I think I read somewhere that my stoma is not reversible. Or maybe that it’s not a straightforward reversal. After my extensive radical surgery I still have disease on my liver, albeit having shrunk to have the size after chemo. Hoping at some point I get to NED so that like you, they’re able to reverse the stoma and fix the hernia.
Yes, I had a Hartmann's reversal at 7 months NED after front line. It went very well. As the last 14" of my sigmoid colon was removed during initial debulking, theres no "horizontal holding tank," for digested material. Colon now aimed directly at the ground! This means I poo 8-12 times a day. I have no problem with that. Previously, I'd have to empty colostomy bag each time. A messy, frustrating, time consuming chore. I have loose stool, not diarrhea. I eat cheese everyday to be sure things are not runny. I am now quite happy to use my natural plumbing. I have no regrets regarding reversal. (You'll need an expert bowel surgeon who has done reversals a thousand times.) I have a recumbent stationary bike I use to strengthen pelvic floor muscles. Works great! I wish you well.🤗❤🙂
Thanks for your reply, Tesla. Really glad to hear you got your reversal and all is working as well as it can be. Yes, emptying the colostomy bag a number of times a day must have been a real hassle.
Am I right in thinking it’s not just a straight forward ‘one operation’ to reverse it.... does another temporary stoma have to be made and used for 3 months or so, whilst the original one is reversed and healing?
I had the stoma take down and hernia fixed all in one operation. I did not have colitis or any other damage to colon. It was a good experience. It takes a couple months for everything to stop being tender. Again, I do emphasize you must have an experienced bowel surgeon do the work. You can actually learn about and watch "hartmanns reversal" on utube. Mine was not laparoscopic. It was open. I wish you well.💗
Hopefully I will get to that stage. My original surgeon who carried out the debulking and who had to cut out the sigmoid, said that when the time comes to carry out the reversal, he will have a bowel surgeon in theatre with him to do the work.
I’m afraid parastomal hernias are very common. In my case not helped by a bit of old gut left behind it. The support pants are good (put Bridget Jones to shame) especially if you are doing a lot of walking or standing. As you say the problem is pancaking and leakage. I haven’t been able to wear mine for a while as am struggling with diarrhoea. My stoma nurse referred me for them I think.
Hi Lisa. I have been wearing support pants from the start. Although no one advised me to, I just read up about them. It’s been 5 years now and have had very little problems. I wear Comfizz level one and get 6 pairs per year on proscription. I was determined not to get a hernia...x
Ah-ha! A wise move indeed. Good to hear you’ve had very little problems. I have a couple of Comfizz boxers level 2 and a couple of Comfizz waistbands also level 2. I have ordered a Ostomy belt from Amazon. It has an opening to fit the colostomy bag through. I’ll try it and see if it works well. X
I had a stoma due to a perforated bowel after chemo 2. I wasn’t advised about support garments initially and also had a parastomal hernia develop even though I thought I had been careful about lifting. My stoma nurse ordered me support garments. I had my colostomy reversed after 2 years in one op laprascopically. Like others it’s a bit slow and I need to take laxatives to keep things moving but was definitely the right thing to do for me. I had the hernia repaired at the same time.
Hi Meridan, I had a scan over a week ago and was told I had an Hernia around my stoma roo. I have ab appointment with the oncologist next week to find out what the outcome was at the MDT meeting to discuss what they are going to do or not going to do about it.
I was diagnosed with stage 3C OC (Not braca1/2) high serous graded in Sept 18, and had radical debulking surgery, spleen, omentum , lymph nodes and gall bladder removed, full hysterectomy and some of my small bowel, hence stoma. I had 3 rounds of chemo prior debulking surgery and 3 rounds after re carbo/taxol Last May was classed as NED. A few weeks ago had scan as had back ache, although my CA125 was at 3. My scan also showed that some of my lymph nodes were slightly enlarged and the oncologist said that they wasn't sure whether or not it was recurrence, so will find out this Friday what they intend to do.... as anyone else had lymph nodes slightly enlarged on scan but no recurrence...
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