Colostomy Reversal and Hernia - Any Advice?

Hi there.

It's been just over 12 months since my colostomy operation due to diverticulitis and peritonitis and now I am waiting to have a reversal. I have developed a hernia behind my stoma (it looks like a perky boob with pursed lips LOL and have another one on the right hand side which the doc tells me is an incisional hernia. I now have what I call my front bum LOL. Hopefully I will have them sorted when I have my reversal. Has anyone else had this? Oh and my weight is another issue too. I have put on 8 kgs in a year just always hungry.

Bub

Hi Bub,

CharK63 here. I had my colostomy reversed in May 2016 and have not fully healed yet. My stoma scar has been leaking ever since then.

I had a CT scan in October which led to incisional hernia repair in November. One week after being released, the whole inch and a half incision scar opened up and began draining, going through bandaging every hour.

It's still draining but starting to close, and I have an appointment on Monday to review the latest CT scan.

The trouble is that I now have another hernia bigger than the last, and I'm afraid they'll see that again and not determine the cause for my stoma getting infected.

I have such serious scar tissue that every procedure takes a long time and creates more scar tissue, and it is more difficult for my surgeon to do and for me to heal.

I have keloid scarring visible from an old surgery, and I wonder if that is the problem. Also, I delivered a 10 lb. 1 oz. baby boy via emergency caesarean 32 years ago and think he's the cause of my problems lol.

I've been trying to stick to a 5 lb weight limit, and in order to do that, it means I virtually do nothing because it's very hard to do. I must be getting somewhat better because now it's becoming hard to sit still and I'm getting restless. That won't help, and it also doesn't help my mental state.

Oh well, woe is me. I will have to go under the knife one more time, and I just hope to get it all resolved.

I don't have much I'm putting off doing while I wait to be well again, just a normal life seems out of reach.

I separated from my husband 12 years ago and had a strong romance with liquor for a while. I lost my license from a seizure, but I'm ready to see what the new repairs, older and wiser me looks like.

As usual, I'm just carrying on here as I didn't exactly see a question in your post.

I will advise you though to watch out in your activities to not strain yourself so you don't get any more hernias. They repair with mesh, and it's not taking too well. I've only had it 2 months, but I have another. And as I said, I've been taking it real easy.

Thanks for letting me vent, and good luck to you.

Charlotte

Hello Bub.

Your hernias sounds very familiar and a 'perky boob' seems like an appropriate description.

When mine started getting bigger, I made an aluminium, rectangular plate with a hole in it to fit precisely around my stoma. this was supported by two elasticated waistbands scrounged from my stoma nurse but I think were from Dansac. In the early days, the metal sometimes made the stoma bleed at the edges if I had been doing things to put a strain on it. However, I found a stoma collar made by Salts which has a soft rubbery collar that sticks out to surround the edges of the stoma. I stuck this on the plate with double-sided tape and it is a comfortable fit with no problems. This device keeps the hernia from getting any bigger despite all sorts of heavy lifting and activities that I know I should not really be doing.

Just as an aside, when I irrigate, I have recently been using a reuseable sleeve from Dansac which has a much larger hole. This exasserbates the hernia to such a degree that I was considering stopping its use. However, I found that once I had finished inputting the water and expelling most of the output, I could quickly swap from their device to mine (one with a sleeve attached) and this would support the hernia for the rest of the night.

I tend to devise my own gadgets to suit me, largely because I do not want to keep having operations to put right what other surgeons have done wrong as it seems like the cliche 'throwing good money after bad.'  Also I firmly believe that the devices that are made as a one-size fits all, is not the way to go as everyone is different and what we really need is a bespoke fitting service. At present this can only be achieved by DIY. Even then I have found that every now and then I have to tweak the gadgets to keep them as a good fit.  

I hope this is helpful 

Best wishes

Bill   

Bill,

Oh my goodness, you are quite the creative fella! I do a lot of different kinds of crafts, including sewing and jewelry making, but I don't even have any ideas to try to implement!

I go Monday to find out about my new hernia, but it took 4 weeks to get approvals and actually get the last ones repaired, and I'm already having trouble getting up and down. I'm even avoiding sitting at my desk to work because the elastic waistbands are pinching and leaving welts that hurt and itch.

I have Spanx and panty girdles, but they are a strain to pull up and down to go to the bathroom, so I'm not sure they can do what a hernia belt does.

Just to remind you, my stoma was reversed, but the scar has opened and it's draining heavily. But I've also acquired a new hernia that's right above my navel and big enough I feel it whenever I move.

So, on Monday, I should ask the doctor to prescribe a hernia belt? Is there any particular I should know to ask for?

Thanks,

Charlotte

PS I agree that every procedure we got does as much harm as good. I'm having a helluva time getting the iodine from the CAT scan out of my body. It's been almost a week and I can still taste it and it's still in my bowels.

Hello Charlotte.

Just a word on hernia belts. I found that the ones that are all in one piece like the top of panties were no good for me because I only have to lose or gain a pound or so in weight and my waistline decreases or increases by several inches. when I'm losing weight  it makes these typpes of girdles next to useless.

For some time now I have been using a hernia belt made by CUI which wraps around and sticks with velcro so it is always the right length for the day that I'm wearing it.

Just a thought

Best wishes

Bill 

Words of Encouragement from Ostomy Advocates I Hollister

Thanks, Bill,

You reminded me that my surgeon seems to know nothing about supplies and that I should do my homework and pick exactly what I think I need. Then I'll give her the item number and say, "Send this in, please." That's exactly what I'm going to do!

Thanks again, Charlotte

Hi. Newbie here. 5 months since my colostomy and I have a parastomal hernia which looks like I'm about to drop triplets. I was referred to CUI for a support belt but because everything took so long after being referred it's like the proverbial bolted horse. My job is very physical and a support belt was mentioned by a stoma nurse while I was in hospital. I think referrals should be done then. Mine was made to measure due to the location of the stoma. It's pretty difficult to wear it now but I will after the reversal.

I looked online but found nothing from my old distributor and the ones I did find looked like they're just for men.

I wanted to go to the appointment in the morning with all the info but unless I have a bout of insomnia that's not gonna happen.

I'm starting to feel nervous about the appointment anyway. It's not often I have to see the doctor face to face to get results. I'm just being paranoid, I'm sure. I don't know why it's always the end of the week that I finally get a response, then I have to wait all weekend before I talk to the doctor.

Thank goodness I have you all.

Thanks, Charlotte

Hello Charlotte.

Just another thought. Recently I have been having back problems and I bought myself a backbrace online which gives me much more support both back and front.  I still wear the CUI hernia belt underneath the backbrace because it seems to be more comfortable that way. This double belt system would not do for anyone who has to use a bag but if it's for support post reversal op, then it might help some people. (and the backbraces are really cheap!)

Best wishes

Bill

Thanks Bill,

I've been studying online so much today about hernias and belts and supports that I hope I'm prepared for the dr tomorrow and I will keep your advice in mind too!

Guess what? My search engine took me right to "MAO" to posts including you and Bain from August 2016 lol. Goes to show how rumdum I am right now that makes it seem so funny!

So good night, Charlotte

Good luck, Charlotte. Mine is unisex, but they use men in the photo.

I too have a hernia but it surrounds my stoma and is very large. Bending over is something I try not to do on my left side. I will be going in for a reversal this month (Feb.); the surgeon says he will do it all at once. It's been 2 months since he has seen it and boy has it grown. Very nervous about this.

Skylar,

I've just come from my surgeon's office. I had hernia surgery on November 17 and now have another painful lump about an inch over behind my navel.

She says this is common and will take a couple of months to go away on its own.

I will accept what she says, but it seems odd to me that I wasn't told about it beforehand and that it's as painful as it is.

She also said that I don't need a hernia belt for it.

Charlotte

Hi Mrs. A, Bill, Supermeguk and all!

I just left the surgeon's office and yay, yay, yay, she took a sample of the fluid coming out of my stoma scar right there in the office and an ultrasound as well, instead of having to go to the hospital!

She will see if there's any more infection in there from the sample. She also got a good view from the CT scan that ruled out any more hernias or fluid buildup anywhere else.

The lump I feel is common after hernia surgery. This is news to me, but I already have a lot of scar tissue and don't want any more procedures if I can help it.

I was prepared with order supply numbers for a hernia belt, but she says that's not necessary. I am having trouble getting up and down, so I think I'll order something off Amazon probably. It will help me remember not to strain myself.

Thanks for all your support. Whoosh! I feel so much better!

Charlotte

Hello Charlotte.

That all sounds good and I hope it all sorts itself out for you and goes well from now on.

Best wishes

Bill

Hello Charlotte,

That's sounding really positive. Everything crossed for you. When I had the 6-week follow-up, my surgeon said it didn't matter if I got a hernia. Well, it does to me even though he'll push it back in. Not painful but uncomfortable and limiting on that left side. I only have a bath and it's difficult getting in and out due to the weight. Next week I have a pre-surgery cardiovascular test and have warned the girl it may cause me problems. I'd definitely recommend a support belt regardless. My stoma nurse told me anyone who had abdominal surgery is at risk of a hernia within the first couple of years, so it may keep your lump in check.

Hi everyone, I am posting for my mother who is 85 years old and had emergency surgery when her intestine burst 7 years ago. Needless to say, she has a colostomy bag. For the last couple of months, she has a big parastomal hernia near her stoma. She thinks it is getting bigger by the day. We are going to doctors and getting opinions as to what to do. She is scared to death to have an operation at her age, etc. She does wear a belt but doesn't know if that is helping or not. My question is, will the hernia grow and grow and maybe grow over the stoma as she would have to have emergency surgery? Like I said, she is scared to death and I am trying to help her find answers to the best of my ability. The doctors' opinions are all different, which makes it all the more confusing. Please help!!!!

Dear Lifechange,

I have a situation exactly like yours. I too am always hungry and have gained 50 lbs (5'6", 200 lbs). My current surgeon has told me I am 'too obese" to operate on.

Do you know how you intend to proceed with your reversal and hernia repairs?

Thank you,

Susan

Hi BHeather. I'm in a similar situation to your mum. I had a hysterectomy last August, but due to decades of endometriosis, he unknowingly perforated my bowel which burst while at home 6 days later. I lost my sigmoid colon. To go 7 years before getting a hernia is marvelous. Mine began in November due to my employer putting me on something he knew I wasn't physically capable of at that time. Sadly, I think it will keep growing, so it does need to be fixed before it causes her too many issues. Let us know what they say.

Can anyone tell me what exercises one can do when one has a parastomal hernia on one side and an incisional hernia on the other side? ....trying to lose weight before my reversal. Cheers

Hi all. I had my pre-assessment today but still no reversal date. All they know from the letter to my GP is the first half of April. I was told it may be keyhole, but he likes doing it in two stages, so I'm likely to end up with a temporary ileostomy. My hernia has become an absolute nightmare, complete with ugly stretch marks. The larger bags I was given aren't as flexible with it, so I'm stuck with the 55mm opening ones. I went away last week and tried wearing the support belt. You can guess what happened. I did feel a little more confident during my holiday to mention the hernia and stoma. Maybe because I won't see most again, although I've stayed in touch with a couple of people.

Hi, I am new to the group and was surprised and interested to hear of all the problems with hernias. I had no idea I may have all this ahead of me! I hope to have my reversal operation on 19 April and have no idea what to expect afterwards. I had rectal cancer and had the whole rectum removed on 1 February. My stoma, which I call "Stumpy," sometimes thinks it is a volcano and spews for all it is worth. This usually happens between 11 am and 1 pm, which can be a bit inconvenient as I am often out shopping or eating out at the time. Luckily, I have not had any leaks from the pouch - so far. I wish you all the very best and hope you resolve all your problems.

Hello Atill.    Good luck with your reversal. I still don't have my date for mine and I'm really angry now. Because I kept being told from November it would be the beginning of April, I've made plans for the end of the month. Nothing is going to happen before Easter now as they know I need 2 weeks' notice. I'm considering taking everything when I eventually go in and telling my surgeon to refund me since it cannot be claimed on any insurance. My hernia is a living hell which is now affecting my right side as well. I've had people trying to get things moving due to how much I'm suffering with the hernia but still nothing has. Really fed up.  

It must be very annoying to keep being put off like that. Here in France, they are exceptionally good with making appointments and sticking to them. My surgeon is really thorough and calls in on his patients sometimes twice a day, 7 days a week, to check they are OK. I hope you get a firm date soon and they can fix the hernia at the same time as the reversal. My only other problem has been with urinary infections after the op and removal of the catheter. Hopefully, that will all settle down in due course. Keep your chin up. Good luck.

Hello all,

I'm back!

Sick joke... I'm catching up with you all as I've been on hiatus since February when I posted all that ROT they were feeding me about my stoma scar that never closed since takedown surgery almost a year ago.

I last said the surgeon drew a sample of the discharge to send to the lab. That took 2 weeks to get results.

All the while I've been telling you all how I've got another hernia, or I'm rejecting mesh and all that... I even described where the lump was on my stomach and how bad it was hurting.

Well, lo and behold, it's not a hernia at all but a soft tissue MRSA infection and what I thought was a hernia was a pus-filled lump that opened up to drain.

Anybody I've spoken to in the medical field, including members of my family, behave as if I am a neurotic lunatic worrying about this because to them "it is no big deal!"

They say "you probably got it when you were in the hospital. Everybody who's been admitted is a carrier." That is exactly what is alarming to me. That and the fact it could be a fatal infection. Silly me. Go figure...

It's also alarming that it took 9 months to diagnose. Was it because the surgeon didn't want to know? Or what? I don't want to sound hysterical (we all know that's true regardless) but for all the hospital's warnings about MRSA, it seems to me it should be diligently tested for and treated ASAP.

I'm irritated with myself as well because I accepted bullshit answers when I knew there was something wrong. It's too bad I was so far off in my self-diagnosis that I failed in my research and went off on a tangent.

Excuse me while I get my medical degree in the next few months so I can take care of myself. Right?

So I've been doing absolutely nothing in order to heal and feeling like a pariah devoting my research to prevention so as not to spread the infection to my mother.

I've been symptom-free for two weeks and that's good because did I mention? They don't retest because it will come out negative due to having been treated, and of course, I will still test positive as a carrier.

It all makes sense to me... it's got to be political somehow.

Charlotte

P.S. Maybe now I can say I've had a successful reversal. Crossing my fingers!

Hello Charlotte.

I think I would be more than a wee bit irritated if they had not diagnosed MRSA for nine months. As you say, it should be routinely checked for in hospital environments and your story is a sad reflection on the medical profession.

I hope things go well for you from now on

Best wishes

Bill

Thank you, Bill, for understanding my dilemma. I'm now a month symptom-free in time for the anniversary of my takedown.

I am still flinching with each isolated pain, afraid of what might happen next.

I fear that I'm missing some clue about the reluctance of the doctor to diagnose the MRSA. Maybe there's something I should be doing to make sure this doesn't happen to someone else.

I'm just appreciating doing things and moving around again, almost like I used to do.

It's funny how many health issues I had that I don't even think about anymore. My hands are getting completely twisted and gnarled up with arthritis and get very painful with changes in the weather. Used to consume my worries, but I hardly think of it anymore.

My mom and I are doing well now. I'm happy I'll be up for it when she's going to need me the most.

Thank you.

Hello Charlotte.

I'm so glad to hear that you and your mom are doing okay now. As for the reasons for reluctance on the part of doctors to diagnose MRSA - that's a relatively easy one to work out as the condition is largely down to cleanliness in the hospital settings, which leaves them vulnerable to being sued for negligance. They have managed to put out widespread publicity about almost everybody being a carrier of MRSA so that it makes it seem as if they are not at fault but it is no coincidence that very few people who do not attend hositals contract the condition. 

Best wishes

Bill 

Dear Bill

I am loath to believe that it's a giant conspiracy however much it appears to be true because that means they do not care about us, their patients, at all!

If that's the case they're in the wrong business and we are at their mercy.

I finally said the other big "c" word (conspiracy) that will only reflect poorly on myself.

I'm still symptom-free and moving forward. Thanks for writing.

Charlotte

Hello Charlotte. Sorry if I gave you the impression that I thought 'everybody' was involved equally, as it's much more complex than that.

It is my belief that the vast majority of doctors and nurses care for and about their patients. Inevitably some are better at it than others and more competent at their jobs but that is another issue. The conspiratorial forces at work in these organisations are often not recognised or working in complete unison with each other but the overall effects tend to be the sameas if they were.

First and foremost there is the influence of Government that decides on how much is going to be spent to support the services. If there is not enough financial support, then the managers of the hospitals lean towards making the priorities go towards the medical work and the finances for things like cleaning are cut to the bone. This means that cleaning and maintenance either does not get done or gets done poorly. the other associated problem is that the wages for the cleaning staff are pitiful so many of  the people employed in these jobs tend to be less than enthusiastic about their work, leading to shortcuts and a less than efficient outcome. There is very little that the medical staff can do about this side of the administration even if it is in-house but most of it nowadays is CONTRACTED OUT  so there is the profit-motive at work conspiring to make wages for these people even lower and designated work practices shoddy enough for them to make their profits higher. Unfortunately, there has always been a tradition in the health services for nearly everyone, including medical staff to close-ranks when it comes ot criticism or potential blame so this is where they become involved in trying to cover-up the inadequacies of the system around them. They are of course aware that the more people sue, the less money is available to the services so it is in their best interests to make that process as difficult as possible for patients and their relatives.

Very rarely,  we get a whistle-blower who enlightens the general public as to what has happened within the system but unless their identities are closely guarded secrets, these people are often pilloried or sacked for some manufactured excuse so there is little or no incentive for anyone to step out of line in this way.

If  and when the system is caught out and held to account, they have this cliche that they put out that 'lessons have been learned'. What they mean by this, is that they have made it much harder for people to talk about bad practice so there will be less chance of the system getting caught out again in the future. The system remains the same except for making examples of anyone who steps out of line. A warning to others who might be considering the same sort of mutinous action.

Most of the medical staff do not want or like this situation but it is very hard to stand up against such an overpowering system, which leads individuals to simply accept whatever administration they have and make the most  of it.

Sorry if this sounds like the rant that it is !! 

Best wishes

Bill