Hernia repair complications: Seeking advice on worsening pain and enlarged hernia

Hi,

I am brand new on here but not to health problems. What I am stuck with is this. 3 months ago, my surgeon told me I needed a hernia repair around my stoma as I had a large mound under and around the stoma. On the day of the operation, they changed their mind and said as my condition had become much worse and I had just undergone surgery on my right leg, which I lost all use of due to blood clots, they didn't dare do the full removal as I had little chance of surviving. So, they opted to tuck the hernia back into a hole they made and fill the space with mesh. Afterwards, I was admitted back into the hospital 3 times with various infections and 3 holes in my side about 5cm deep. It took 3 months for them to stop leaking and start to heal. But a week ago, I noticed the hernia is suddenly larger than ever and extremely painful, and I am constantly feeling the need to go to the toilet even though that's a physical impossibility as my bowels no longer work. The pain is getting worse, and I have been to my GP twice only to be told they cannot do anything. I tried to see the surgeon but cannot get an appointment for 3 months.

Has anyone else had this problem, and what did you do to solve it? I am getting a bit desperate now as I don't know how much longer I can cope with the pain.

Hi Short,

I'm not well versed in how healthcare works in the U.K., but can't you go to the Accident & Emergency Department at any hospital for care? I'm sure some of our U.K. members will chime in with some advice shortly.

Regards,

Bob

Unfortunately, it's very common for hernias to return. I've known them to come back on members while still in the hospital recovering from hernia repair surgery, just from sneezing or coughing. Expect the surgeon warned you before surgery that there was a high risk of it returning. The urge to go the old way is phantom bowel pain. Sitting on the toilet can help at times, making your mind think you've gone that way. Do you still have your rectal stump or anus? If so, it could be a buildup of mucus. Your GP doesn't sound very helpful. I know they can't do anything about the hernia, but they could contact your surgeon and say you need to see them urgently. I would phone your stoma nurse at your hospital and speak to them about it. If they think it's needed, they can get your appointment brought forward with the surgeon... or A&E if you think it's urgent.

Hello Shortdavie62.
I agree with Panther and Bob. Of course, we can only guess at what the cause of your pain might be, but what we can do is share our own experiences and you can decide whether the information is of any use to you.
The problems with mesh have been well-researched and it amazes me that surgeons are still using it. However, back to the 'phantom-feelings': These are quite common after an operation as the nerve-endings are still in place and they fire information to the brain even though, in practical terms, the information is false.
However, I still get the urge to defecate along with associated pain and I am years down the line from my operation. I figured that my problem was being caused in two different ways: The first was a build-up of mucus, especially when it solidifies. In effect, this acts in precisely the same way as faeces to cause that sensation of 'wanting to go'. Secondly, I had an anal prolapse which was exacerbated by faeces before the operation and is now worsened by the build-up of mucus.
The last thing I wanted was to have more operations, so I decided to try to resolve the problems myself by irrigating the anus and flushing the mucus out. I had irrigated the anal end before my stoma op, so I was familiar with the technique. This can be a dangerous process so I would not necessarily recommend it being done without some expert supervision and advice. A good stoma nurse might help with this, but in the UK there are also bowel & bladder clinics, with nurses who are familiar with anal irrigation. I have been to one just last week and they offered me an anal irrigation set. That was because I described my own device(s) and they were taken back as to how I managed to do it without causing damage. I find that irrigation gets rid of the mucus and relieves the pressure in the anus (and presumable on my prolapse). This results in the pain being greatly eased and sometimes it even goes away completely.
As I said above, I don’t know if this could be similar to your own problems, but it is perhaps worth investigating further as there could be a fairly simple solution to your pain, and from my perspective, this pain is obviously not ‘phantom’ but results from a physical condition that is resolvable.
Best wishes
Bill

Did they exclude a strangulated hernia as a possible cause?

Dave

This is not a topic I wanted to see. Sorry, this mate is going through it. I just found out I have a parastomal hernia and my doc was telling me about the mesh, showed me a picture blah blah easy peasy, 2-week recovery to have it done. Go in through the original incision 3 1/2 years old and do whatever so the hernia goes away.

There was no mention of failure after the surgery. Certainly no idea that it could come back! Dr. said I'll be in great shape. I can live a normal life, exercise, but that I would not be able to elect a reversal later, which is okay with me.

So can someone please walk me through their experience with a parastomal hernia if any? Glad this site is here and people are willing to share, thanks folks!

I also have problems with hernias. I have 6 of them, yes 6. Three on surgical line, one above, one below, and umbilical. One on each groin and one parastomal. Scheduled for surgery Jan 15, 2020, laparoscopic with robot, and using mesh. After, no reversal. Am now wearing a stoma hernia belt during the day. Some twinges of pain now and then around groin and above umbilical.

I have had 3 parastomal hernia repair surgeries in 6 years – the last being in Jan. this year.

Surgery #1 was emergency since 8 inches of small intestine had "blown out" and gotten kinked. No mesh was used.

Surgery #2 used mesh. Hernia returned within 6 mos. along with a prolapsed stoma.

Surgery #3 left existing mesh in and added another layer of mesh. Surgeon also used a technique to try to better secure/tighten the skin to the stoma. Now, hernia appears to be returning again, though not nearly as bad/big as the last one. Thank goodness the stoma hasn't prolapsed – yet? Am keeping a watchful eye on it as I do not want to go through a 4th!

Oh, and I have always worn a hernia belt since my original ileostomy surgery in 2013.

I have a single, very large peristomal hernia. I have researched getting it repaired, but my research has been mostly negative. It comes down to health issues: is your current hernia causing problems with pain or other health issues. If the hernia is not strangulated or causing problems, the best thing is to leave it alone and learn to live with it. Why? Because over half of all hernias repaired return within 1-2 years. And there is a 4-6% fatality rate from complications of the surgery itself. In my case, the surgeon told me it appears to have no immediate health concerns. It's ugly, but why risk dying for what is essentially vanity?

Having said all this, your case is not the same! You have a problem with your hernia that is causing health issues, and you need somebody knowledgeable to check it out much sooner than 3 months down the line! As was suggested above, check whether your ostomy nurse or GP can get you a faster referral to a surgeon, or try through the ER at the hospital. And keep complaining until somebody gets off their duff and does something for you!