Huge hernia repair and stoma resite: Need advice!

Sorry, I haven't been around much recently - here in the shadows, but I have been having a very down time with loads of added stresses... Anyway, guys and gals... I need your help. I went for my pre-op assessment today... (waste of time, but that's another story...)

I have a HUGE hernia, which is to be repaired with mesh, with a probable resite of stoma - and a possible hysterectomy due to endometriosis...

I was concerned that I didn't seem to be down to see a stoma nurse so that it could be resited properly...

The nurse said - it will (stoma) only be resited on my left if I were to have a colostomy... If I were to stick with an ileo, it will stay on my right (where my hernia is) and only be moved up or down slightly... Am I right in thinking that is a load of rubbish?

Right or wrong - I don't know - no experience. I am sure you will get more posts about the issue you present.

I have noticed your absence and thought things might be difficult. It seems like when things are ordinarily bad, we can reach out to others but when it gets to the bottom of the barrel stuff, we close down and pull in.

I need to tell you - - I just want you to know how much I admire you and I miss your posts. You have helped many of us at one point or another. You were one of the first I heard from when I felt so lost and alone. I remember thinking how powerful you are and it gave me strength. I know you don't always feel strong but it is how I see you. Hold on and continue to be your fullest self for you and for us. Please let us know when your surgery is scheduled.

Carol "dawneagle"

Hi Carol - Thank you, my lovely. You always make me feel a bit better despite having a tear in my eye!

Yesterday, my surgery was scheduled for next Monday, 4th October. Today, it is who knows when! The surgeon has decided he needs to see me next week, so I am hoping it will be the 11th (he only operates for the NHS one day a week!)

I will let you know ...... bloody nuisance as I have kids, animals, and my family in Yorkshire to organize, so I need to know - but who in the hospital cares about all that, eh? It took the nurse 10 minutes to even look me in the eye today, ignorant woman!

Rach xxx

Hi there Rachel, good to see you posting again and I see some things never change. You were also one of the first to contact me for much needed support those years ago and never forgotten and I had hoped by now you would be well on the road to recovery and not the merry-go-round you seem to be stuck on, when you get something definite we hope you will let us know, we care and always will love, take care, Ed

Big kisses, Ed! Mwah. Will keep you posted, my friend. xxxxx

Raechell hey can you believe i asked where you have been too... Hey i was asked too bout hysterecomy oh guess what wont touch this old sack of cut up meat and i too have 2 hernias im seeing bout them oct. 18th ..Now this ileo .Colostomy thing ..I have no colostomy so i dont think they are being honest F.O.S work that out Full Of Shite okay i did ... I have had my stoma on and off so yeah i have been re-sited hope i spelt that any way they never said one thing to me about being it whether its this or that hey beware i reckon mine is on the left side now it was on the right hand side and actually wen i had to have my ileo back on i had so many problems cause i think coz of the scarring i would if i was you get my new stoma on the left hand side mate the problems then big ulcer i had that didnt get better and the pain cause i have ileo so no leavin pouch off for long girl i would have a brand new site i have my scar that shouldnt be so big except the rotton ulcer i think what they arew saying to you is crap but then who know sounds like they dont ..Also here in Oz i am in Public darl we dance to their tune when we have operations like you too so i had a few times when they put my operation Off then didnt tell me they had too even cancel arghhh Great to finally see yopu back ob here havnt heard or seen tippy top either darlz.?? so i know lots of colstomy people im still voluteering at Association here and i dunno if i would want an ileo like me if i had to choos none well hahaha silly me hahah but ileo if u dont need one i wouldnt have one you will sure know you have one sooo much different honey my mates hate the thought of mine .... Yep i need hysterectomy for a start couldnt even inderstand the gyno i was given his english wasnt good or my chinese was bad real bad ...He said how many operations i said knowing here we go said 8 he said OH no no no too many adhesion no no no good i gave him my ultra sound he didnt even tell me what the hell i have i knew iflamed ovarian cysts and lesion on the left ovary i been coppin pain every month and sick as a doggy lol but i dont want an op oh yeah raech rem you cant have a certain tablets with a ileostomy also and all that crap ..But still a new site might be nice if your got probs darlin ...xxxx best of luck darlz you been waiting a long time same over this way as well mate goos to finally see you xx mozy poozy hahahahahah

Hi Mooza babe! Yes, I thought she was full of shite to be honest! I've come across a few now with left-sided ileos - I just looked at her and thought, "You have no idea, woman," and nodded in the right places! At one point, I said, "I have a bad memory now, but I am not thick!" So tired and weary after my trip, so I think a nap is in order... Catch you soon, girl xxxxx

Yeah darl, I know what you mean. Just with the lefties, it's getting used to emptying. Hahah, on the left hand side, no big deal really. Take care, I know you've been through so much as well!! They really think we are daft sometimes!! Hahah, like this little hand. Hahaha, that's what I wanted to do last week. Ugh, "YIKES" ...............Good to know you're still around, Darlzy..xxxxx

I have had both a colostomy and an ileostomy, and yes, the colostomy was on the left. If you're not seeing a stoma nurse first, do it yourself in indelible marker. The girl next to me last time got her husband to write a note in green ink and an arrow right across her tummy. I was sitting on the other side of the curtain, thinking I must be hearing things and that my pain meds must be great. But sure enough, she did it and she got it where she wanted it.

I am so sorry things are still not brilliant. I think of you often.

Trish x

Aww thanks Trish .... just a thought, you having had both colostomy and ileo, which one would you choose given the choice? No reason that I am aware of that I couldn't have either one or the other ...
Rach xx

I have also missed your posts and wondered what was up with you. I am sorry you are having such problems. I have also had both an ileo and a colostomy. My surgeon had said that a colostomy was by far a better choice but I haven't experienced it as such. My guess is that for most people having food make it all the way to the end of the colon results in firmer stool, more chance of the nutrients making it into your system and possibly the chance at irrigating. My surgeon couldn't use the marker spot the nurse circled. I have had radiation and he picked the healthiest piece of colon he could to pull out. It operates much as the ileo did: runs all the time, liquid all the time. The only real difference was the gas production in the colostomy is less than it was with the ileo. I remember waking up at least twice a night with a balloon on my right belly. Now I can sometimes make it through the night with the left side. Sometimes not.

Good luck!

Lynn

Hi Rachel, I've also missed you on here. Hope very much all goes well. Thoughts and healing prayers coming your way. X

Hi, I am new to this and now have a hernia as well. Is this something that goes hand in hand with ostomies? I think that I might have another developing right beneath and kind of alongside my stoma. At first, I had my stoma on the right side but it rotted and fell off (BEFORE LEAVING THE HOSPITAL), then after 7 weeks of pain, I finally went into the Emergency and they found out (in surgery) that 12 inches of my intestines were also bad, due to poor blood supply, so they moved it over to the left. All has gone well, until about 3 months ago, now I have developed a lump in my lower abdomen and then about 2 weeks ago, the area just to the left of my flange started to swell. Now what, my Dr. says it is just fat as I have gained a lot of weight. No diet seems to help. So now I wonder if I will just keep getting bigger until I burst. This is very hard on the flange. It keeps popping off from the pressure. More surgery???? That scare has been opened 9 times, each time it gets bigger. I live on my own and there are no others with ostomies that I know of around here. I am so glad I found this site. I feel a little better that I can at least ask someone who knows what I am talking about. Thanks to all of you. Sorry for going on and on. Seems like I am the oldest person on here. Oh well,

Hi, Rachel. I am fairly new to this site, but live just down the road from you in Collingbourne, and so interested in whether you are under Swindon or Salisbury. Also, do you know of any support groups? I can only find one in Swindon or Wilton. By the way, I have a colostomy (31/1/11) which all went a bit wrong and now have a rather large hernia which I wear a belt for (my corset), but I know I can't have it repaired so just try and look after it the best I can. I hope that you get yours sorted and get some joy out of somebody.

Well, I think I managed the colostomy better and lots of people talk about being able to irrigate a colostomy, which sort of appeals cleaning it all out and being done with it for the day. I seemed to have fewer disasters as it was less liquid. But it could just be me.

Trish x

Hi,

I also had multiple hernias resulting from my ileo surgery. One huge one was where my ileo sat. They did repair it plus others with arthroscopic surgery including mesh. Those hernias have not come back...but other ones have now formed. I don't see a reason for them to move your ileo at all. They sure didn't move mine - they worked around it. Get another opinion. I know the NHS as I used to live in the UK. Still, try to get another opinion before undergoing more surgery. That's just my best suggestion. Take good care and keep all of us in the loop. Best wishes...Tricia

As with many others, I am pleased to see Lottage Lady (Rachel) back on here again. Such a tower of strength, but she sure looks as though she has had a few downs recently. I, along with those others, I am sure, wish you all the success which you deserve.

Welcome to bfraser1999. I know how it is to feel a little lonely, believing that nobody else around understands the anguish. Living in France, I have found no English speakers here with the same problems, so this forum has been immensely helpful. (I bet you're not the oldest on here.)

I went for my hernia pre-op discussion with the anesthetist today, and she has now referred me to a cardiologist - 3rd November. Since the hernia repair was originally scheduled some four months back but postponed at the last minute, I am becoming a little pissed off and beginning to wonder if the whole thing is really worthwhile. I have read on here so many stories of a hernia being repaired with mesh (my surgeon's offering) only to fail and fail again that I am on the point of calling "Enough. Que sera sera". Can anyone tell me of a successful mesh repair job?

Hi Dulcimerman here (Jim)
I have 3 hernias, very large, as I have ileostomy and urostomy. I also have a hernia at the top of my rib cage due to all the ops.
On speaking to the surgeon, he informs me that these hernias could be dispersed somewhat by gauze, but that could become infected. So the outcome is, I have decided to live with the hernias, uncomfortable as they are. I just don't want to be opened up any more.

Hope this is of some help to you.

Take care.

Jim

Ummm lots to think about - the surgeon wants to see me on Thursday, so will see what crops up there, no idea why really? Hope I will get a date too - it was supposed to be today. I have been very down recently, so tired and no energy and the state of my house now my daughter has moved in is getting me down too - she does help, but also leaves a trail of stuff behind her everywhere she goes.

Hi bfraser, that is my worry, I am not the smallest of creatures and wonder if I cough or sneeze, will the mesh be strong enough to hold it all in? Not really wanting more surgery after this one - my 21st!

Will update you all after the next installment on Thursday!

Rach xxx

I also have a hernia and fought with the Dept. of Veterans Affairs (US) over 2 years about getting mine fixed. They started out giving a different reason each time I went in, and they are all general surgeons and not Colon and Rectal Surgeons specialists like the one I wanted to work on me. Lately, they seem to have settled on my weight being the limiting factor - I'm over 300 pounds. I do have a specialist (non VA) now but no date yet, but I will get my hernia fixed. I am not looking forward to being in the hospital but will put up with it.

Given the size of my hernia and location, they have told me my stoma will be resited but not where I really want it. They keep wanting to put it in the front instead of the side where it won't stick out. I know they have good reasons for putting it there (in front), but it's not my preference.

Hi Rachel, read your story with interest. I have an ileo which I've had for 4 years but haven't so far had to have any further surgery. I'm sorry I can't be of any help to you but wish you all the best for your surgery. I live in Chippenham, so am not so far away from you. Let us know how it all goes. Lots of love, Janice xx

Hi Janny - thank you for your best wishes - looks like there are now a few of us in a 'Wiltshire triangle', so if you fancy meeting up after it's all over let me know!
Rach xx

Hi Lottagelady, yes you are right to think it is a load of rubbish as myself I have had an ileo and my stoma sited on the right, I also have got a hernia. When I had my operation done it was an emergency and they sited the stoma too high which has been uncomfortable so when I saw the consultant he said he would re-site the stoma but it would have to be on the left as where it is now on the right to raise or lower it the stomach wall not take it as the wall is weakened from the first op. Also, he said he will remove the hernia at the same time. Hope this helps and good luck for the future.

Am distraught ..... my big op is likely to be another year away .... my surgeon wants me to have my endometriosis laparoscopy and possible hysterectomy first, recover from that, then go ahead with the big op re my stoma and hernia afterwards ...... gutting and butting included

Distraught would be my word also. I am presuming there are reasons for doing things in this order. Did they explain? I am curious. My logic says it would be better the other way or at the same time. Or maybe that would just be my preference.

As a reminder - laparoscopy generally has a much more rapid recovery time.

Distraught, anger, frustration would all be high on my emotion list (maybe fury). I sympathize and empathize. It must be a really bad time for you.

We have all witnessed your strength. I believe you will once again rise above these difficulties but allow yourself a time to feel the emotions. It seems like we are all so often on one or another roller coaster. And I think the best survival skill is to just feel it and get through it to the other side.

And, dear lady, I hope you realize I am speaking to myself as well as to you. We can continue to move through. We are getting so skilled at moving through difficulties.

And remember the word difficulties is like the term discomfort when telling a young woman about giving birth. We use those terms because the truth can only be experienced.

Oh dear, worst possible news. You psyche yourself up for one thing and then when it doesn't come off, it is soul destroying. You will get through this I am sure, and just think of your pain-free future then. In my hospital, they do laparoscopic hysterectomies which are a lot quicker to get over seemingly, but it is still just another hurdle to get over. I hope that you feel better soon. Take care, Jenny.

Would love to meet up with you after it's all over. I had huge problems when I had my surgery done and was in the hospital for 4 months. It's left me with peripheral neuropathy which leaves weakness in my legs, feet, arms, and hands. Walking is poor, so I don't get out much. It's left me with severe anxiety which I have medication for, but which has now started to leave me unable to sleep for more than a few hours. Life's never simple, is it? Speak to you soon. Janicexx

Hello sweetie,
I am really sorry to hear they are mucking you around. I know they have their reasons, but it doesn't help you when you just want to get things done and not be anticipating surgery all the time. I know how that feels only too well - frustrated, angry, and then feeling low. I feel like my life is always on hold until "the day" too, so I do empathize. At any rate, no words of wisdom from me. I haven't found them for myself either. But a willing ear and a shoulder if you need it.
Trish xx

Thank you, Trish - much appreciated. I will try to get hold of my gynae surgeon and hurry things along, but I doubt whether it will make much difference! xxx

Good morning Cottagelady,

I am new on this site. I have a colostomy. I underwent surgery on March 1, 2009. In June of 2008, I had an attack of Transverse Myelitis, which attacked my spine. I lost all control of my bowels and had a very painful prolapse. I had to wait a year to have the colostomy because of insurance problems. I have had a very hard time coping with this, and over the past few months, I have developed a large hernia at the site of the surgery. My surgeon thinks he can possibly repair this, like you said you had done, with mesh. I'm very interested in how you do with this surgery. Thank you for replying!