Recovery After Colostomy Reversal and Hernia Repair with Mesh

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119
Thomasina
Jan 30, 2025 9:22 pm

Hi everyone, my name is Lynda. I am from Southern NJ and had a "surprise colostomy" back in November of 2022. We are still on the fence as to whether I really had a perforated bowel due to diverticulitis, which I had no idea I even had. Nothing ever showed on the 2 CT scans or X-rays, so I was told by my then surgeon that he was going in for "exploratory surgery just to see what was going on"... No mention of a perforated bowel or chance of any type of ostomy. Anyhow, I was in the hospital for 5 weeks with no bowel movement until 2 days before being sent home after asking for some type of laxative from several people. The combo of lactulose and Milk of Magnesia did the job... The last 2 years have been hell and full of complications and loads of incompetence. I could write a book about all that has happened. I went to a new surgeon in the summer of 2023, and he did not want to get involved with the reversal and hernia repair. So now I am having my reversal done by another new surgeon and another team for the hernias.

Could anyone give me some info on how their reversal and hernia repairs went and what to expect? I was somewhat traumatized by this whole thing, but I MUST get this reversal and hernias repaired as the hernias are starting to cause issues... stool becoming stuck in the same two places every few days where it is visibly noticeable, and you can feel the lumps. It freaks me out. Also, I was put on Stelara in the summer of 2023 for Crohn's, which I have only had 2 flares in the last 14 years, but due to all the trauma and stress, I did acquire a Crohn's flare about 3 months after my colostomy, which brought on a Pyoderma Gangrenosum right smack next to my stoma, which had to be biopsied and packed with crushed prednisone and calcium alginate for weeks. If anyone has ever had one before, you know how PAINFUL they are, to the point of bringing me to tears when having to change the appliance and pack it. Anyways, having Diverticulosis and being on Stelara is apparently a big NO NO... so now I have a new GI doctor as well. So many comedies of errors...

Anyways, my apologies for this being so very long... my scheduled surgery date is 2/14, and I was just looking for a little positive good news and experiences. It's very nice to meet you all, and I look forward to hearing from you.

Most sincerely and best wishes of good health to you all,

Lynda

 

aTraveler
Jan 30, 2025 10:43 pm

Still on the fence about you having a perforated colon even after performing the surgery 🤔 Strange indeed.

With parastomal hernia repair, you want a surgeon that has performed many. Since one surgeon declined, did he indicate it was a complicated surgery? If so, you want a surgeon that has done plenty of these complicated surgeries. Recurrence of hernias is frequent with skilled surgeons with many such repairs. Do you have one surgeon performing the reconnection and repair?

I wouldn't just go with the first surgeon that said he/she would do the repair. Some ostomates have their colorectal surgeon so the reconnect and a hernia specialist do the hernia repair. Talk with an ostomy nurse, PCP, or any person you know that knows the surgeon to assess whether he has displayed the skill level to perform both repairs.

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Beachboy
Jan 31, 2025 12:29 am

I'm curious, why did you enter the hospital the first time? What symptoms did you have? I had multiple CT scans and X-rays that showed I had a small infection in my abdomen. But nothing looked amiss. I had exploratory surgery resulting in a colostomy. 12 inches of sigmoid colon were removed due to hernia repair mesh causing 2 intestinal punctures. Looking back a few years, I realized I must have had a puncture, but it didn't cause much trouble. I had lots of gas, low blood pressure. Every blood test revealed low hemoglobin. My doctor said I must be bleeding somewhere, but no one could find exactly... where. I must have developed the second puncture, and that created bad enough sickness to put me in the hospital.

SusanT
Jan 31, 2025 1:52 am

Wow, you've had a time of it. I'm sorry this has happened to you. 

I'm with aTraveler, make sure you vet these surgeons carefully. With all the problems you've had, it's important to know that this surgeon is good. 

A good surgeon will have explained the potential risks of your procedures. Those risks are increased with a poor surgeon.  

I haven't had either of these procedures myself so I can't help with that. But I do want to encourage you to be your own best advocate. 

aTraveler
Jan 31, 2025 3:21 am
Reply to Beachboy

Were both punctures in your sigmoid colon? Since you have a sigmoid colostomy, have you ever considered irrigation? Does your hernia prevent irrigation?

 

 

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Beachboy
Jan 31, 2025 6:08 am
Reply to aTraveler

One hernia mesh wrapped around my colon, the other mesh was stuck on my bladder.  Luckily my bladder was not punctured.  

Both punctures were on the sigmoid.  12 1/2 inches of it was removed.

If I was younger I would irrigate.  At 67, the bag is easier.  I can go 14 days with same wafer, with no problems.  Just replace bags as required.  I'm somewhat lazy.

I get no leaks or blow outs.  My parastomal hernia remains small, slightly pushes my stoma sideways.  

Been married 38 years.  Wife don't care if I have the bag or not.  Just cares the bills get paid 😉

Thomasina
Jan 31, 2025 10:22 am
Reply to aTraveler

Hi there...thanks so much for reaching out. Yes I am still on the fence about initially having a perforated colon PRIOR to being opened up as nothing ever showed up on my 2 CT scans and X-rays done prior to "exploratory surgery" nor was anything ever mentioned about a perforation showing up on the scans. This would not be the first time someone had a "WHOOPS" with me while doing a procedure. I went into hospital back in 2013 for an ERCP and woke up in ICU inverted in bed (head pointing down to floor) due to surgeon nicking my liver.

The surgeon, the one doing my reversal came highly recommended and there will be another team who will be doing just the hernia repairs. The prior surgeon who declined just didn't seem to want to get involved and told me of all the complications that can occur after having reversal and hernia repairs.  Now I just found out my Calprotectin is very high which indicates inflammation due to any number of things...Crohn's flare, diverticulosis, the parastomal hernia itself and other things...so now I'm not sure if I am even going for my Pre-Op tests today...I'm thinking of rescheduling my surgery on 2/14 and in the meantime make appointments with Colorectal Surgeon, GI Specialist and the Dr doing the hernia repair just to make sure everyone is on the same page with things. I truly don't need to do the prep (2 days before surgery) only to find out I'm not able to have the surgery or it becomes another nightmare due to infection and or complications.  Doing the prep with a colostomy is a whole different ball game than without one...as you may know? And due to my parastomal hernia which is the size of a large grapefruit causes issues with my appliance fitting correctly which results in leaks and all that good crap....(Rolling eyes) LOL!!!

Thanks again for reaching out...have a great weekend.

 

Thomasina
Jan 31, 2025 10:26 am
Reply to aTraveler

Hi there...thanks so much for reaching out. Yes, I am still on the fence about initially having a perforated colon prior to being opened up, as nothing ever showed up on my 2 CT scans and X-rays done prior to "exploratory surgery," nor was anything ever mentioned about a perforation showing up on the scans. This would not be the first time someone had a "WHOOPS" with me while doing a procedure. I went into the hospital back in 2013 for an ERCP and woke up in ICU inverted in bed (head pointing down to the floor) due to the surgeon nicking my liver.

The surgeon, the one doing my reversal, came highly recommended, and there will be another team who will be doing just the hernia repairs. The prior surgeon who declined just didn't seem to want to get involved and told me of all the complications that can occur after having reversal and hernia repairs. Now I just found out my Calprotectin is very high, which indicates inflammation due to any number of things...Crohn's flare, diverticulosis, the parastomal hernia itself, and other things...so now I'm not sure if I am even going for my Pre-Op tests today...I'm thinking of rescheduling my surgery on 2/14 and in the meantime make appointments with a Colorectal Surgeon, GI Specialist, and the Dr doing the hernia repair just to make sure everyone is on the same page with things. I truly don't need to do the prep (2 days before surgery) only to find out I'm not able to have the surgery or it becomes another nightmare due to infection and or complications. Doing the prep with a colostomy is a whole different ball game than without one...as you may know? And due to my parastomal hernia, which is the size of a large grapefruit, causes issues with my appliance fitting correctly, which results in leaks and all that good crap....(Rolling eyes) LOL!!!

Thanks again for reaching out...have a great weekend.

 

Thomasina
Jan 31, 2025 10:40 am
Reply to Beachboy

Hi Beachboy...I initially went into the hospital for abdominal pains and vomiting and no stool movement. They had me on several different antibiotics and a slew of tests...just liquid diet as I could not keep anything down. No fever though and I was previously in hospital about 2 weeks prior with a kidney stone (which I did pass eventually).

So you had hernia repair with mesh done prior to your colostomy?  I'm so sorry it ended up giving you such trouble that resulted in having to have the colostomy. Do you still have the colostomy and how was your recovery when you had your hernia repaired...can you feel the mesh inside? I pray you are doing much better now and thank you for reaching out. Have a great weekend.

Jayne
Jan 31, 2025 10:50 am
Reply to SusanT

Yes, and a good surgeon will work regularly with an experienced radiographer who is experienced at reading and assessing CT MRI info... And a good surgeon will take his/her time in going through - on screen - with you, explaining the pictures and helping you understand what is going on - and will also explain the proposed plan - 1st, 2nd, 3rd, 4th options of preferred action/outcome - dependent upon what is found and how the actual intervention proceeds while within the theatre - ELECTIVE surgery [when one knows before entering the theatre what is planned] does allow one to be an active participant and knowledge/shared understanding is good... Obviously, in an emergency situation, this is a different scenario.

 

As has been said by others - ASK, ASK, ASK and be diligent in finding someone with whom you can work and do not rely on 'blind subcontract' - after all, you would not give away your child to a stranger on the street - so do not give away your own health and potential to move forward with a little understanding and involvement within your own situation - Your body deserves you to have your hands on the wheel - all the driving instruction and mechanical maintenance have vital roles in keeping you on the road - but if you do not assume involvement then likely your journey may not be as smooth as its remaining potential could be.

 

And Thomasina, I do appreciate the difficulties involved - it's a learning process with steep curves and some blind right angles - but you gotta try.

 

Persevere and do not be afraid to insist upon answers - and if not forthcoming - look elsewhere!

 

Good Luck

 

Keep us all posted - there is much experience on here and folk are willing to share - which can only help to guide what questions and give you food for thought - and TIME to balance before committing - Move in a panic - repent at leisure.

 

I wish you good hunting and good fortune... it's a complicated road - but worth navigating.

 

Best of Luck,

... persevere ...

 

 

[Edit: I replied before sighting your own explanations to AT and BB - so sorry if my reply sounds rather pompous - did not mean any disrespect - for some folk can be ultra trusting and do none or very little ground work - I see in your own case you are involved... I wish you good outcomes going forward... hang in there... good luck.]

 

BW

 

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

Jayne

Thomasina
Jan 31, 2025 10:55 am
Reply to SusanT

Hi Susan...Thank you so much for reaching out. It's so true...you really have to be your own advocate and do your homework to help ensure things are being done efficiently. My husband was diagnosed with Multiple Myeloma in April of 2020, and I have to say he has had way better care and a team of competent and compassionate doctors who have truly been a blessing...This new surgeon is actually an associate of the original surgeon who did the surgery, but this guy is a bit further up on the scale and has assured me I will be HIS patient, not the other...although I may run into him post-op in the hospital. When I asked the original surgeon 2 1/2 months later, "What is this huge lump that surrounds my entire stoma?" His answer was, "Basically, I gave you a hernia"!!! It was not until I went to a different surgeon who informed me that it's a parastomal hernia and how they go about fixing it. The original surgeon treated the whole procedure and aftermath as if I had my tonsils taken out...NOT COOL!

Thank you again for your good advice...and I love the black kitty in your picture. Have a great weekend.

Thomasina
Jan 31, 2025 11:24 am
Reply to Jayne

Hi Jayne...thank you for your sound advice...Yes...I have learned quite a lot on this whole subject in the last 2 years since this whole train ride from hell began. It's difficult when you get conflicting information from different surgeons and medical specialists. All I can say is that there is a lot of incompetence out there and that's pretty scary. I don't even know of anyone who had an ostomy of any kind up until having one myself. My original surgeon had the compassion of a fence post and as I mentioned in my other reply to someone...We still are not convinced that my "perforated bowel" was really an issue at all...until I was opened up and maybe someone had a whoops with me and gave me a perforated bowel as nothing ever showed up on the CT scans and several X-rays taken prior to my "exploratory surgery"...it would not be the first time someone had a whoops with me during a procedure. Not to mention I mysteriously acquired a cracked thoracic vertebrae which showed up on my next CT scan after my surgery and were not there prior...like I said...a lot of things happened during this time that have left many questions on the table.

Thank you again and have a great weekend.

Jayne
Jan 31, 2025 11:53 am
Reply to Thomasina

Bless you bigly. Incompetence is singularly so not good... and it leaves us with issues we then need to navigate and also learn to trust where it is wise - another challenge... for to hold anger is even worse - but to move through it and past to where we are now also takes a lot of careful balance - and diligent research.

 

What I feel I have come some way towards developing is a feeling of NEED to arrive at a place where I am in a balanced confidence [never total - but sufficient] whereby I can actually let go sufficiently to invest the 'power' and trust with a surgeon - or a team of two surgeons and possibly an extended team running a robotic assisted system to address the complicated landscape of heavy adhesions and other remaining 'happening' bunkers within my abdominal terrain.

The anger thing is singularly unhelpful - someone once said to me 'holding anger is like letting someone squat rent-free' i.e., without contribution but resulting in a deconstruct... or at least this is what I have understood - and TIME is a great help here - for it takes both time AND self-love to process anger and redirect one's energies.

Incompetence is not only singularly irresponsible - but the worst of it is the trail of 'barrier' it leaves behind... for others are wary of coming into contact with a jagged fence - for to enclose a problem with new definable and regular wires, posts, and timbers is not only doable - but, by definition, is a first starting point in the ideal world...

 

It takes a very experienced and balanced vocation for someone with the RELEVANT EXPERTISE and willingness to take one on.

 

From your post, it would seem, however, that through your misfortunate experiences you are more robust and definitely wiser - what sadly, does remain with us, is the 'baggage' of exposure to what did happen... Hopefully, especially as technology moves forward - by degrees - one may have a measured recipe which can be tried - in stages - to make the best path going forward.

 

Many blessings,

J

 

 

SusanT
Jan 31, 2025 6:43 pm
Reply to Thomasina

I don't understand why they didn't order an MRI prior to exploratory surgery. Things can be missed on CTs. You might have had a perforated bowel that didn't show up on the CTs. I have a leak from somewhere in my intestinal tract that stubbornly refuses to be found by CT. I've had 4 CTs with oral contrast and nothing. But the fluid keeps draining from my pelvis so we know it's there somewhere.  (MRI won't work for this unfortunately. )