Episode 94: Life as a Patient Advocate | Hernia Talk Live Q&A

You can listen to this episode by clicking here.

Speaker 1 (00:00):

Good morning everyone. It’s no longer evening. We are here on an early day on Hernia Talk Tuesdays. My name is Dr. Shirin Towfigh. Welcome to Hernia Talk Live. I am your hernia and laparoscopic surgery specialist. Thank you for following me on Twitter and Instagram at hernia doc. Many of you are joining me as a Facebook Live at Dr. Towfigh. And as always, at the end of this session, I’ll make sure that you have full access to this episode and all previous episodes of her talk live on my YouTube channel. I’m super excited to have Sue Blackwell. She is coming to us from Liverpool, England. She is a hernia patient advocate. I love for you all to hear her story and learn from it and hopefully find your own or be one of your own. She’s coming to us from the UK, which is why we’re earlier today. You can follow her on Twitter at sue b and please provide a warm welcome to Sue. Hi.

Speaker 2 (01:02):

Hi. Thank you for having me today.

Speaker 1 (01:05):

It’s evening and at your time, kind of midday for us, so I really appreciate you coming on with your evening. I’m sure you’ve been working all day and I know you had a lot of meetings before today, but we have a lot of enthusiasm about you because your story’s very unique and what you do and help patients is great. And so I wanted to hear a little bit about your story. We actually met in person. We did at the European Hernia Society meeting, so that was very exciting. And then before then I think we were just like Twitter mates, is that right? We’ll see. Yeah,

Speaker 2 (01:46):

In Twitter is where it’s at.

Speaker 1 (01:50):

Yeah, so I’m super excited. We’re already having people welcoming you on the show. So maybe you can briefly tell us your story and how we came to meet.

Speaker 2 (02:04):

So obviously I’m Sue. Hi everyone. So I had an inflammatory bowel disease, so I ended up medication fails. We ended up having a pump proctor colectomy and then ileostomy, which obviously I thought at the time was going to be the end of everything. Can I tell you surgery cures you see and you’ll be fine and happy then. So that was in, it’s a long time ago now, 2005, and then I developed my first parastomal hernia.

Speaker 1 (02:34):


Speaker 2 (02:36):

I had I that repaired in 2007. And so parastomal hernias are a thing, that’s why we’re here, but it’s kind of, so no, for a lot of us it’s part and parcel of having a stoma that you might end up with a parastomal hernia. But guess at that point I didn’t realize what, I guess what it would lead to. So obviously 2007 was repair number one and then in 2017 I had repair number six.

Speaker 1 (03:12):

Oh wow. Oh my, that’s horrible.

Speaker 2 (03:18):

So I guess I know Well that’s the thing because they sort of say don’t we? I mean, I don’t know. I say to patients, repair number one has probably got a best of 50% success rate, but you don’t think what will happen if you are not in the right 50%. You just think, oh yeah, I’m going to have surgery and I’m going to be fixed and it’ll all be great. But I wasn’t in that 50%. So yeah, all the surgery in between. And then you know, mentioned that we’ve kind of spoken on Twitter, so I guess with Twitter I got involved in Twitter, there’s a huge amount of colorectal surgeons and hernia specialists on Twitter, and I got talking to people and then it kind of just spiraled from there. So somebody saw me tweeting about my live, tweeting almost all the complications from my last repair and then invited me to speak at the Association of Color Proctology conference here in the UK. And I did that. And then just from there I’ve just kind of got really, really involved in parastomal hernia research and spreading the message about it’s not just a hernia.

Speaker 1 (04:22):

Yes, thank you for that. So you had ulcerative colitis.

Speaker 2 (04:26):


Speaker 1 (04:27):

So you’re cured of your disease after the colon was removed?

Speaker 2 (04:31):


Speaker 1 (04:33):

The problem with ulcerative colitis, besides meaning that big of a surgery is that you’re probably on a lot of medications to control the disease. And so you’re not having a stoma surgery as if her tissue’s totally normal. You probably had steroids and other medications that prevent healing to try and treat the inflammatory disorder. And then in addition, you need surgery for the ileostomy.

Speaker 2 (05:00):

Yeah, yeah, I think that’s potentially part of it, isn’t it? Because quite a few years on steroids, immune suppressants. And then somebody told me once, I dunno how true, it’s that sometimes people with I B D have slightly dodgy collagen. I don’t know whether that’s true, but somebody told me that once. One of my surgeons said that and I thought maybe there is a bit of truth in that.

Speaker 1 (05:22):

Yeah, I’m not sure how much truth there is to that because it is an inflammatory disorder. However, I wonder if it’s dodgy tissue because of all the medications you have to be on to control it. Because I think patients with Crohn’s disease, which is kind of the sibling to ulcerative colitis, they’re both inflammatory bowel disorders. That one, the tissues tend to be pretty normal. You often operate for complications, not for the inflammatory portion of the colon. But it’s interesting you had problems with ileostomy. So there’s, in my recent post on social media, I talked about the three stomas that we deal with. There’s a ileostomy, which is basically a small intestine which goes through the muscle of your abdominal wall, and then you have your stool coming into a bag. There’s colostomy, which is the colon, so the large intestine, so it’s a larger hole than the ileostomy going through the muscle.

Speaker 1 (06:28):

And those have a higher rate of parastomal hernias and there’s a urostomy, which is not common, but in those who have it, they use the small intestine to make a fake bladder. And then that bladder is brought out as small intestine through a small hole in the abdominal wall. Those tend to have a much lower risk of abdominal hernia. And so you’re urinating into a bag abdominal wall, but either way the surgeon is causing a hernia. It is technically a hernia, but you want the bowel to herniate so you can empty out. The problem is you can’t control what happened, how big that becomes. Wow. You see you’ve had six or seven operations,

Speaker 2 (07:14):

Six. Six para hernia repairs, a few more surgeries on top of that, but yeah, six para repairs.

Speaker 1 (07:22):

So one of the questions we’re being asked is, has to do with your recovery. So how long did it take for you to recover from each operation? Did you have a lot of nausea and bloating and pain? How involved were these operations each time?

Speaker 2 (07:39):

So the first repair it kind of just because that was just done kind of at the stoma site, so that was a relatively straightforward recovery. The second one, I unfortunately let them recite the stoma, so it was a full midline laparotomy and it was recited, which I now know is not the right thing to be doing. That’s a lot

Speaker 1 (08:01):

Of, yeah, we’ve changed a lot of our recommendations over the times. Yeah,

Speaker 2 (08:04):

Yeah. So we did that. So obviously that was a full open incision. So that took sort of three months to recover from. The other ones are a mix of laparoscopic and open, and maybe I’m just a bit strange. I found the laparoscopic ones much harder to recover from. The recovery seemed longer. But then repair number six, I probably never fully recovered because I had a lot of complications and then I ended up back in theater 15 months later as an emergency

Speaker 1 (08:36):

For my purpose.

Speaker 2 (08:39):

So I had lots and lots of subclinical obstructions over those 15 months. I was in that hospital and I managed to put myself in acute kidney injury twice in 10 days. So they just went, okay, no, we’re going to go in and unstick everything because everything was quite stuck together.

Speaker 1 (08:57):

So this person who’s asking the question, she’s still in pain at four weeks from a complex abdominal wall reconstruction. Did yours take longer than four weeks sometimes to recover? What

Speaker 2 (09:08):

Are Oh yeah. I think four weeks is really early. I think you have to give it time, probably maybe three months or so, especially want to use the word Mesh if you’re using Mesh. And I have no issues with Mesh because I haven’t had any problems. But you know, guys use sutures or tacks to hold the Mesh in and they are the most painful bit. The tacks, even like the absorbable ones, you feel every little tack for a long time. So yeah, four weeks in, that’s why. Yeah,

Speaker 1 (09:36):

That’s a day. Yeah. So let’s talk about Mesh. So in general, in hernias or hernias after any operation don’t heal well unless there’s something to help with the closures just closing the hole doesn’t work, it just falls apart. That’s where Mesh comes into play. The European data shows about 50 to 60% hernia recurrence. If you don’t use Mesh, using Mesh is not that much better. I think it’s like 25%, but it’s less than half. But with Parastomals it’s such a unique situation because it’s not technically a clean operation because you’re dealing with open intestine and you don’t want Mesh to erode. You don’t want the Mesh to get infected, whereas you’re dealing with open intestine and you don’t want the Mesh to erode into the intestines. So have you had different types of Mesh or absorbable Mesh or what do they do for

Speaker 2 (10:39):

You? Yeah, I’ve had think, well, I’ve had six different types of Mesh. So I have had, when the seroma was recited, they put a 30 by 30 bit of polypropylene in on the right hand side, which has caused no problems. The, there’s quite a large, incisional hernia now because the surgeons have to go through that Mesh twice with repair number six and with the emergency surgery. But yeah, so I’ve had different meshes from different companies, so a lot of them, the biological stuff, but I guess, well they sort of done their job, the hernia has recurred, but you kind of knew it would. But Mesh wise, I haven’t had any issues. And I know some people do have problems with Mesh, but I always say to people with a perastomal hernia, if you’re going to repair it without Mesh, it is going to recur a hundred percent. It will come back

Speaker 1 (11:29):

Bigger. It

Speaker 2 (11:30):

Just, yeah, I guess it just depends how long you’re going to get. Because you might get 10 years, but you might only get 10 months.

Speaker 1 (11:38):


Speaker 2 (11:39):

It’s very much kind of what sort of a risk are you willing to take?

Speaker 1 (11:44):

What do you know about the current standard for parastomal hernias? Is there any use for, do you guys have hybrid meshes there?

Speaker 2 (11:53):

I think we do, yes. Yeah.

Speaker 1 (11:55):

Do you know if there’s a trend towards using less Mesh or more biologic or? Not

Speaker 2 (12:02):

That I’m aware of, but that’s something that we’re looking at in a international parastomal hernia treatment study that I’m helping to run with Tom Pinkney. So proffer, which is going to be looking at, it’s looking at patient reported outcomes after parastomal hernia treatment. So we’re looking at operative and non-operative, but part of that is obviously what we gave, gathering all the data on how the surgery was done and what Mesh they used and where the Mesh was placed. So that will give us those loads of data. So I think that’s going to be really helpful because we’ll have a huge data set from across the world so we can look and say, actually, do you know what it looks like this Mesh in this vein with this operative technique is the better one for preventing recurrence.

Speaker 1 (12:46):

This is fascinating. So you had a normal day job.

Speaker 2 (12:49):

I have a normal day job.

Speaker 1 (12:52):

And then what happened was you started communicating with the world about your issues and now you’re linked with major colorectal surgeons in the UK.

Speaker 2 (13:04):

Yep. Now, yeah. So myself and Tom are chief investigators on proffer and I actually in January started my PhD and I’m doing that on parastomal hernia and shared decision making.

Speaker 1 (13:17):

That’s fantastic.

Speaker 2 (13:19):

Alongside the day job.

Speaker 1 (13:21):

Yes. I’m not sure there are many people like you though. Is that true? Do you have colleagues around the world that you could

Speaker 2 (13:27):

Yeah, there were people. There were other people I, me you met Nicola Dame. You met her in Denver? Yes, yes. Sweet. Yes. So Nicola does similar and there’s other people here in the UK. I dunno, I guess I never realized before that patients could be this involved in research and changing outcomes for other patients, but I don’t know, it kind of puts six parastomal hernia repairs and all the sort of stuff that goes with it. It’s not really pleasant. It’s one of those sort of things if you sat and I don’t know, looked at it, actually the different impact it has had on my life, you’ll probably sit in a corner and cry. But by doing all of this I can put all of the bad stuff to use and help other people so that other mes, so others don’t have to go through it.

Speaker 1 (14:17):

That’s so lovely. So you’re actively involved in research, which is fantastic. What do you say to people that their marriages are disrupted by all these operations? Their work is unhappy because they’re taking so much time off. How did you have to deal with the social aspects of all these complications? Because peritoneal hernia, of all the hernia repairs, the worst outcomes are from the parastomal hernias and the denervation injuries. The ones where you actually have a bulging from nerve injury. So how do you talk to patients about how you dealt with it?

Speaker 2 (14:57):

Well, I guess I was lucky I was single, so I didn’t have to think of anybody but me. Although again, there’s a downside because then there isn’t anybody to kind of help you with things, you just have to get on with it. But it had a huge impact on work and finances and it, it’s really, really difficult. And that’s why I sort of say to people really, really think hard about whether you want to have surgery. Because if it goes well, that’s great and you’ll get a really good quality of life back and be able to do what you want to do. But if it doesn’t go well then you know, actually can’t imagine right now how much of an impact it has on your quality of life. And it was something actually I hadn’t thought as much about because before I moved to Liverpool, I was lived in London and I was in civil service

Speaker 2 (15:45):

And we had great sick pay and I know sick pay in America and all of that is just virtually it. You don’t have much annually [inaudible]. So in the civil service I got six months full pay and six months half pay. So I had a lot of time out, but it was fine because I got paid properly, didn’t have any worries about paying bills. And then when I moved here and I started working for a private sector company and my sick pay was 10 days and then it’s like, okay, and the government sick pay is something like 93 pounds a week. So I’m not quite sure that it’s in dollars. It’s not very much. The exchange rate is not great is it’s probably only maybe about $120 hundred $130 a week. And that’s what the government give you to live on. Was

Speaker 1 (16:37):

That does,

Speaker 2 (16:37):

Yeah. Yeah. So it was really difficult cause you’ve got no choice but to go into hospital, but then you’re left. Well I dunno how I’m going to pay the bills. And then you have to ring up the bank and say, I can’t afford to pay this month and I can’t do this. And then you can’t go out anywhere cause you haven’t got any money.

Speaker 1 (16:55):

Yeah, there’s a comment about, that’s a great point because if you have surgery, go about it. It can ruin so many different aspects of your life. So let me ask you this. So you do your research with the colorectal surgeons and the different society you’re involved in hernia societies and so on, and then you work one-on-one with patients as well?

Speaker 2 (17:17):

Not necessarily, but I do, I’m in quite a lot of Facebook groups and I try to give advice that way. I think sometimes it’s very difficult. That’s why I do a lot with the surgeons because sometimes I think surgeons are more receptive to hearing about things because if I stand up in front of them and they see an actual person who’s had six pairs don’t want hernia repairs and I tell them about all the bad things and then I show them pictures of my CT scans and then they’re like, oh okay. Yeah, yeah. It kind of puts it more into perspective for them. And then I know that when they next see another patient like me, they’ll think about, oh actually what am I doing? Is this the right thing? But I do try my best to help other patients.

Speaker 1 (18:03):

Nice. It does humanize the situation more than usual. So do you talk with patients that have not had parastomal hernias or just have had abdominal wall hernia surgeries

Speaker 2 (18:18):

Online? Yeah, there, there’s but I think a lot of the, a lot of people that I’ve spoken to have had, have had parastomal but also they’ve had, they’ve needed an abdominal wall in repair as well as a parastomal hernia.

Speaker 1 (18:34):

So one question is I’ve had umbilical and ventral hernia repair with absorbable Mesh and subsequently had Mesh removal. My urologist is now recommending cystoscopy in conduct in conjunction with laparotomy for adhesion removal. What risks are associated, sorry, with this procedure following a history like mine, what can I do research or research to better advocate for myself? I’ll answer the first part, I’ll have you answer the second part. So the first part is now that you’ve had Mesh removal and they want to do adhesion removal, so I’m assuming your hernia hasn’t come back, but we prefer to do adhesiolysis or adhesion removal laparoscopically because the risk of having more adhesions is slightly less, but it’s an advanced procedure. So if you have a surgeon who can do these laparoscopically and it can be a laparoscopic, that’s usually a better total outcome. But what can this person do or research to better advocate for themselves? Sue?

Speaker 2 (19:37):

I mean I would say go online and just go onto Google and put search for surgeons that are doing that surgery wherever you are. I don’t know whether the person’s in the US or the UK, but go online and see who the people are that are sort of leaders in their field and see if there’s anybody near you. But also reach out to them and say, I live here and it might be 600 miles from you, but is there somebody nearer to me that you would recommend? I do find that people are quite always quite keen to help people and to recommend somebody else. But it’s a lot about going online, looking to see who the best person might be, but also ask other patients, what are the questions that you should be asking? Because I think that’s the thing, as a patient, you don’t always know the questions that you should ask.

Speaker 2 (20:26):

So maybe if you talk to others who’ve had similar surgery and say, right, well okay, what were your outcomes? Did you have any complications? What do you wish you’d been told before your surgery? Then you’ve got a good list of questions when you do find a surgeon to say, okay look these are my questions and if you don’t answer them, if you can’t help me, can’t kind of give answers that will make me think, okay, this is the right decision to then find somebody else. It’s your life, you know are putting your life in somebody else’s hands. So you need to feel confident that you know, trust what they’re doing. But also I think you need somebody that you can have a rapport with and that you get on with. That’s just as important as the surgical skills. I think

Speaker 1 (21:10):

That’s a good point. Do you find the Facebook groups to be helpful for patients?

Speaker 2 (21:16):

Yes and no. They can be helpful, but I think they can also sometimes be,

Speaker 2 (21:24):

I dunno, negative isn’t the word, but I think sometimes with the best well in the world, because people are giving their own personal lived experience, you can’t tell them that what they’re saying is wrong, right? Because that’s their lived experience. But when I see people in Facebook groups who say to somebody, you mustn’t have Mesh, do not have Mesh, and it’s like, well okay, you’ve had a bad experience and I get that, but for every one person that has this, however many that haven’t, but by you telling this person don’t do this, if they listen to you and make that decision, that could very well be the very worst decision for them.

Speaker 1 (21:57):


Speaker 2 (21:58):

So I think there’s a balance on Facebook.

Speaker 1 (22:02):

I have a patient that absolutely did not want Mesh, went to another surgeon and had a non Mesh repair and now they’re miserable because they’re in chronic pain. They’re basically tearing apart the repair because they should have had a Mesh based repair and now they’re pissed off at the surgeon for this kind of bad outcome. It’s a give and take as a surgeon, you’re trying and explain and some patient, I just weren’t offering non Mesh because it’s the wrong operation and I know that they’re going to have more complications, more tearing, more pain and a bigger problem if they do choose non Mesh. So a lot of, I know the UK is similar to the US and that there’s a lot of anti Mesh sentiment and patients go on Facebook or other or Google. And literally the last patient I saw this morning said I parked my car across the street and as I was turning off the car, the radio was giving advertisement about have you had Mesh?

Speaker 1 (23:05):

Have you been injured by Mesh? Call us to sue. And he’s like, I don’t know, should I take that as a sign? So there’s a lot of that going in the US I think there may be as well in the UK and it takes a lot of time for us surgeons to help educate our patients about, yes, this is a good option, it’s a non Mesh. No, definitely you should not be doing a non Mesh option question. So the question’s this, so have you had six meshes total or were measures removed and replaced when you had these multiple operations?

Speaker 2 (23:45):

Well some of them were sort of absorbable meshes, so they’d kind of done their thing and absorbed them. But I guess there were probably must be some were some, I know in repair number six he did have to title take. He took out the old Mesh to put in a new one. But the Mesh is that they weren’t taken out because there was a problem with the Mesh. They were just, it was either had done its thing or wasn’t doing what it needed to do. Sure,

Speaker 1 (24:16):

Yeah, sometimes we remove Mesh if it’s in the way of a good repair because Mesh on Mesh doesn’t work very well. No, the Mesh needs to stick to something that it can grow into and other implants don’t do that. So you need to make space for the new meshes. Okay, another question. This is a long one. I had robotic surgery three weeks ago. I had three hernias, one umbilical, one at the bottom where my uterus was coming through. So that’s a suprapubic and one on top of my liver, on top of my liver coming through. So that’s probably like a subcostal. Also, I had my lower organ stuck to my abdominal wall that were cut off of it and placed back where they belonged. So it sounds like adhesions were removed. They also used sutures to close my fascia from top and bottom and a large Mesh to the sides of my whole abdomen place inside, which sometimes you have to do for those really hard, really large ones. The pain was intense and I still have some pain and tightness and I have to eat small meals because of any bloating causing pain and lots of pressure. Do you get that? Do you feel like eating promotes any stiffness or pain or pressure in the belly? Okay.

Speaker 2 (25:25):

No, not anymore. I don’t think I’ve ever had that.

Speaker 1 (25:30):

Well I think she’s having, she had two ton of a repair and I have to eat small meals because any bloating causes pain and lots of pressure. Will this ever go away or will I always have this pressure? Because the size of Mesh placed inside me, my doctor said I never have to worry about a hernia again because of the closure they did in the size of the Mesh. So I’ll just give my 2 cents on this. The role of fixing an abdominal wall is to restore a functional abdominal wall. It’s not to make you nice and tight. In fact, tightness is perceived as being painful and if you’re too tight, that’s not a good thing because you can’t bend to tie your shoelaces, you can’t lean forward to brush your teeth. Even some people it’s not so tight. So it affects your quality of life.

Speaker 1 (26:17):

And if your abdominal wall is not allowed to expand with a cough or a meal, then that that’s too tight of a repair and all meshes shrink. So if you put a Mesh in, it’ll shrink between 10 and 25% depending on the type of Mesh. So you don’t want to make it the original repair type because then once a shrink will be even tighter. So it sounds like you may have a tight repair. The reason why we don’t like tightness is the same reason we don’t like tight clothing. It’ll tear. So the Mesh sounds like it’s preventing the tear, but instead you have a tight repair. There’s very little to do besides redoing the repairs. So I would let time kind of help with that one. Next one, this is for you. I’m really worried about complications of having abdominal Mesh removed. I have three young children to take care of. Would you advise against having Mesh removed? What have you heard about people’s stories with Mesh removal,

Speaker 2 (27:21):

If any? Heard a few. Cause for abdominal Mesh, I’ve not heard many people like having it removed unless it’s being replaced with something else.

Speaker 1 (27:31):


Speaker 2 (27:32):

So obviously the vaginal Mesh, there’s a lot of stories about that being removed and I know that’s very specialized, but I don’t know that, I guess for the person asking the question, it would be also what are the symptoms that you are having from what are the symptoms that you’re currently having and for wanting, for needing, for thinking about having the Mesh removed because you know might want to have a good conversation with the surgeon about what the potential risks and complications will be postoperatively because it may be on balance, it’s better to not go in. I don’t know. Sometimes I think it’s better to try and do all you can to live with some symptoms rather than just go in and take Mesh out or operate because I don’t know you, I always think you can really only go into somebody’s abdomen so many times before it gets to the point where it’s like, yeah, no

Speaker 1 (28:30):

This is very true. This is very true. And I feel that just wanting the Mesh removed is not a good idea because there are risks with it. And the second is the risk, whatever the symptoms are, need to be worth it because like you said, any operation has more than 0% risk of going wrong and it can have devastating effects in your life. And there’s plenty of people who said, if I only had known I would never have chosen to do X, Y, and Z. So that’s very true. So let’s talk about, okay, there’s a question about Mesh shrinking. Yes, all Mesh shrink, the biologic Mesh is stretch, the synthetic Mesh is shrink. So even proceed Mesh.

Speaker 1 (29:18):

Alright, another question coming up. How should patients navigate all the conflicting information provided by different providers? That’s a good one. Without offending them and therefore being dismissed as a difficult patient. For example, my dietician recommends a carnivore diet and my GI doc recommends plant-based diet. But besides the diet issue, you must see that a lot trying to help patients navigate the system so that they don’t put off their doctors because we’re all humans, we have egos and some people take things more personally than others and so on. But how do you teach patients to navigate the system and figure out conflicting information and maybe go back to the first surgeon, say, well the other surgeon said this. How does that work out?

Speaker 2 (30:13):

I think it’s about making sure that patients are aware of, as I said before, the questions to ask. And when they’ve asked the questions and they’ve got the answers, whether it’s from DR one or DR two or whoever they see is to then go away and think about it and think, well okay so these are the questions that I ask these two people, these are the responses they’ve given. This is me, this is who I am, this is my lifestyle, these are all the other factors that I need to think about and we know which person here is giving, do I fit better with and what are they saying? And then if you think, oh actually and you could go back to them and say, well can you just clarify this or clarify that. But also I think as well it’s maybe look online and there’s a lot of research out there and we’re not very good at sharing it with patients, but you can contact people.

Speaker 2 (31:04):

So I’m sure that you’d be more than happy if I was to email you as a patient and say, oh I’ve seen this paper that you presented, would I be able to see a copy? Because then you can look at things for yourself. And I think we need to do more about empowering patients to actually take more of a role in their own healthcare and looking at what’s out there and looking at the research and saying, okay, because I think you should be able to go along and say hi. Right, okay, I’ve read this paper and I think there’s some really good, I think this is a really good technique and I would like you to consider this. Do you do this? And if you don’t, could you refer me on to somebody that can do this because I think that this would be better for me. I think we need to be a bit rather dunno. Historically we’ve doctors have always been up on a pedestal. The doctor says, you will we’ll do this, you don’t need to worry. But I think now is the time for us to say, actually you are. Yes, you are very well qualified, you know what you are doing and I’m the patient but I want to have be able to have a say as well.

Speaker 1 (32:06):

That’s such a good point. And I feel that, well there’s a great book by a former patient of mine, MMartine Ehrenclou named The Take Charge Patient. I used to give it away as Christmas presents because it’s so all written. It’s written with a patient of mine and it tells you all the tips and tricks on how to get the best care and navigate the healthcare system. Come prepared, have questions, but also don’t sound like uppity or argumentative or how to get, what if they don’t give you an appointment for six months. So how do you communicate a follow up with the doctor? So it’s a great book. It’s called the take Charge patient. And it’s written in a way where it’s very respectful for the patient but also for the doctor and teaches you all the tricks that I know how to get in. I always tell my patients, call Dr So-and-so if you can’t get in, let me know. I’ll figure I’ll do it. I have a family member right now who’s a different country that I’m trying to navigate their care from distance. But you got to do it in their tricks. They’re a lot of tricks basically.

Speaker 2 (33:16):

But I think that’s the thing, isn’t it? Different countries have different healthcare systems. So in the UK I could look up a surgeon and say, oh, they look like the right person. Yes, but we are allowed to, you can choose the hospital that you go to, but you can’t really choose the surgeon. So the referral could go to the hospital, but that surgeon might not pick it up. Whereas I think because obviously we’ve got the National Health Service, it’s all paid for, it’s free at the point of use, whereas yours is insurance based and you can do it in the states as it’s kind of an outsider looking in, you can do a lot more kind of shopping around and you could go and see three or four different hernia surgeons until you found the one that had the technical skills but also that you got on with. Whereas here, well I’d like to ask, it’s not quite the same here.

Speaker 1 (34:08):

I would love to know your opinion of that because often during these Hernia Talk Live sessions, I say listen, you live in, for those of you in the United States, take advantage of our healthcare opportunities. You can go to any doctor you want at any time. Now some of them may cost you more, but you’re not limited to this one doctor five months from now. There are countries that are more very socialist in their medical care and it’s very kind of difficult to penetrate that system. We don’t have that difficulty. You can fly to New York right now to see a doctor or Florida or Texas and many of them will be even covered by insurance completely. So it’s just a matter of seeking the right surgeon. So if you see one doctor you don’t like them switch, you can totally do that. Whereas in the UK I have a lot of patients that seek my opinion and expertise for them. And you do have a two-tier system. You have the NHS, which is socialized healthcare. Everyone has access to that, is that correct?

Speaker 2 (35:21):

That’s correct, yeah.

Speaker 1 (35:23):

But it’s somewhat categorized based on urgency. And then you do also have a separate private system, is that correct?

Speaker 2 (35:33):

That’s correct, yeah. If you’ve got private health insurance.

Speaker 1 (35:36):

And how is that more like the US system?

Speaker 2 (35:40):

I think so, yeah. I mean obviously I can’t get private health insurance cause they would exclude any preexisting conditions. So for me, probably most of anything, and if you think back to having had uc and being on immune suppressants as I suppose if you ever got any kind of cancer they’d say, well that was because of the drugs that you had 20 years ago. It’s all of it. But I think if you have private health, I’ve seen a consultant once privately because I didn’t want to wait the seven weeks it was going to take on the N H S, which to be fair isn’t that long. A wait at the time can be months, but it was easier just to pay and go in and see them and then carry on the NHS. But we can do that. You can actually go and see somebody privately. But I spoke to somebody recently on email and they said, oh no, my only option now is to go to the states. And I was like, well there’s some very good surgeons in the UK that you know can speak to. You don’t have to go to America.

Speaker 1 (36:32):


Speaker 2 (36:33):

And I gave them some names of some people. I was like, look, here’s three people that I know that are very, very good. But they’re also very good at talking to patients. And I think that’s perhaps more what this person needed rather than anything. But I just thought, oh no I can’t. As nice as you and some of the others in the states that I’ve met are, I hate to think that somebody thought that that was their only option that they had to spend all that money to fly from the UK to the US

Speaker 1 (37:01):


Speaker 2 (37:01):

Get help when there are people here that will do the same.

Speaker 1 (37:05):

I agree. And I have multiple patients in the UK so a lot of the surgeons that I also know and so I’m like, no, go to this personal, contact them for you and so on. Some are doing it through the NHS and others not. But yeah, there are opportunities to be able to do it. I feel that you just have to be your own advocate. No one’s going to care about you except yourself better than yourself. Tell me a little bit about this concept for parastomal hernias, which is preventive. So because the rate of recurrence can be in the 30, 40, 60, 70 5% rate, very, very high numbers unacceptably high. There’s some discussion about preventing the hernia from starting in the beginning by putting in some type of Mesh, whether biologic or permanent at the time of the stoma placement. Is that something that you see as now happening in the UK?

Speaker 2 (38:09):

I think it’s happening in some places. There’ve been a couple of, quite a while ago now, there were a couple of clinical trials that looked at it, but they never actually properly reported. But it, it’s something that some people do and I think at the moment in the UK they sort of said if you were going to use prophylactic meshoma formation, then you had to also enroll your patients into the cipher study that Neil Smart has been running, which is looking at the incident of perastomal hernia. So that’s taking people from index surgery and then following them up to see whether they develop a parastomal hernia. So I think that made sense to say, okay, if you’re putting in prophylactic Mesh then you need to be part of cipher. So that’s finished recruiting now, but they’re doing the follow up. But

Speaker 1 (38:53):

Yeah, the cypher study, that’s really great to have that ability to force people to go into those studies because we do need that information. Okay, next question. If you had a ventral hernia mass removed with no tissue repair because scar tissue was sufficient to prevent recurrence. Not true by the way, should not you avoid a future laparotomy whenever possible because it will surely result in a new hernia. So yeah, the scar tissue is never adequate to prevent recurrence. However, if we remove Mesh and there’s no hernia to repair at the time, we usually don’t prophylactically repair anything, especially if the Mesh is removed for pain because you don’t want to remove the source of the pain potentially, but then don’t add another source and then not make the patient better. But there is still a very high risk that hernia will recur because scar tissue is never adequate for hernia recurrence.

Speaker 2 (39:55):

Is that partly then, you know you’ve got that thing about, I’m trying to do it with my fingers, but the short bike closure or long bike closure. So I think that’s quite interesting. And when, you know, I’ve seen people sort of demonstrate that with perforated paper and a ring binder and it’s like the little holes or the big holes and it’s like look which one’s stronger. So don’t know. Does that have a big impact on recurrence?

Speaker 1 (40:18):

Very much so. Yeah. There’s a great retweeted that picture at least twice because it’s such a great, our friend from Turkey Kong is the one that actually posted it. Oh yeah, it’s a great visual. He’s part of the European Hernia Society. I think he’s in the leadership though. Yeah, yeah. So what the thought is that if you’re closing, I mean listen, it’s the same as tailoring clothing. If you’re closing a hole, let’s say you have either a hernia or more importantly you had surgery, you had your surgery. If once you had your initial little surgery, they had to close the laparotomy scar, the midline abdominal wall muscles. It used to be they would teach us to, you have to take big bites, big bites of the muscles to kind of cinch everything together. That doesn’t work because the bigger the bite, the tighter the repair and the tire of the repair is more likely for it to tear.

Speaker 1 (41:21):

Now you have big tears, which is what we call incisional hernia or Swiss cheese hernia. So the new trial results from the European group was the short, the stitch trial or it’s what we call the short stitch trial, which is instead of taking big bites, you take a lot of small little bites. And so you can compare it to trying to tear paper out of a three wing binder. It’s pretty easy to tear or tear paper from a spiral. Those tight spirals much more difficult to tear. And so the hope is that more closures are done a tight spiral as opposed to a three ring binder. Say the clothing you’re wearing right now, Sue, there’s not big gaps in the sutures. It’s really small ones and it doesn’t tear that way. So I don’t understand why we do surgery different than when we repair clothes. I don’t get that. Why are people not thinking?

Speaker 2 (42:23):

But it’s some of that because, I dunno, historically, maybe, I dunno about the states, but in the UK a lot of the time it’s always been said that closures when the surgeon goes, and sorry, 20 surgeons, I know they’re watching closures when the surgeon goes to get a cup of coffee and they just let you know the trainees do the closure. So it’s like maybe that’s why it was always big bites because it’s like, come on, hurry up and let’s not take the time. And I dunno, I guess maybe as a surgeon, some people have historically looked at it and gone, but the most important part is what we’re doing inside the abdomen and closing is just like we, we’ve got to just as much as you’ve just got to open, you’ve just got to close as quickly as you’ve opened and ship the person out and get the next one in. And

Speaker 1 (43:10):

Yeah, unfortunately that’s true. That joke, I’ve heard it multiple times. Surgery is coffee time close, surgical closing is coffee time, which means the… because surgery is a very hierarchy. It’s like the military, the boss boss, the attending surgeon is like, all right guys, close up. I’ll see you at the next patient and you have a medical student or a resident or something closing. Now I don’t do that. I’m very involved till the patient’s actually awake. So I don’t leave the room until the patient’s awake from surgery. But it’s very common for the closure to be not considered the important part of the operation. Like your surgery, they took out the whole colon. What’s the closure? Staple, staple, staple, staple. And so in my mind, and I may be oversimplifying this, but if I see someone who’s had a messy or ugly closure, it reflects to me on the daintiness in which they did the original operation.

Speaker 1 (44:19):

If I sit in someone’s car and it’s dirty and it’s got food like particles from two months ago on the crevices and then it’s a dirty car, I’m going to judge them that they’re probably not a very clean or exact person in their real life. That may or may not be true, but that’s just kind of the way you judge people. And that’s how I judge people from their closures. If they don’t care enough to close what you as a patient are going to see, then it’s possible they’re not even caring enough on the inside as much as they should. I don’t know. Yeah,

Speaker 2 (44:52):

Maybe. No, I think that’s, and that’s the thing, isn’t it, for a lot of, a lot of patients, the scar, what the scar looks like is really important and you’ve kind of got quite a rushed, messy closure almost that the scar and the physical appearance makes a huge impact for patients. And I know some people really struggle because they’ve got a scar. It’s not very neat. And especially if they’ve, they’ve had an infection postop and some of it’s opened up a bit. And that, I think the psychological impact of what your body now looks like is as big as the impact of the rest of the surgery. What you might have had removed.

Speaker 1 (45:33):

People get very depressed by it because they see it every day. And the infection’s an issue, colostomy scar, especially if you are lucky enough to be able to have that colostomy or ileostomy close and taken down, that scar can be at risk for infection and kind of heal very ugly

Speaker 2 (45:54):

Or, cause obviously I had mine moved and they were sort of like, oh, it’s sous, you’ll get an infection. So they sewed it up. It was really badly done, it was really loose, but they were expecting it to get infected. So they just did a really, almost like a botched job. I would just stitch it out like this. Cause they were like, I’ll get infected and we’ll have to cut the stitches out. And it didn’t get infected and it healed. But obviously it, there’s quite a dip now. It’s a bit sort of like that.

Speaker 1 (46:22):


Speaker 2 (46:23):

So although, yeah, if they’ve taken more time or done it another way, so now really there is no way to move the stoner back because of the scar from the previous stoma site.

Speaker 1 (46:35):

Is that, or

Speaker 2 (46:36):

They could, well they could do, but it would be either really low down or really high up.

Speaker 1 (46:41):

So it’s separate scar, they wouldn’t go to the same scar.

Speaker 2 (46:44):

No, but I think because, well, no, because it goes to, there is quite an indent. I think you’ve tried to put a stoma there now, you wouldn’t get a bag to stick properly at all because it just wouldn’t because appliance, it’s in such a crease. Yeah,

Speaker 1 (46:59):

Yeah. There’s a lovely man who I worked with who has a great website and first stomas and he also I think sells a whole variety of, it’s a chat group and he also sells a variety of stoma appliances and so on. It’s a whole niche. People that need stomas and have stomas,

Speaker 2 (47:23):

I know there’s a lot of us out there

Speaker 2 (47:27):

Just quietly getting on with things without, as, I think the thing is as stoma and obviously them seroma hernias and stuff like that, it’s something that you never really think about until it happens to you. I don’t think anybody, people talk about the stoma stigma, but I don’t think anybody that hasn’t got a stoma has ever thought about a stoma. I know I didn’t beforehand. I don’t think I even knew what one, I don’t think I knew what one was. I didn’t have any kind of views negative or positive about it because I’d never met anyone with one. So it wasn’t a condition that had ever, I don’t know, crossed my radar. You know, don’t think about other, I mean, everybody’s heard of cancer, most people know somebody that has had cancer. So cancer everybody knows about, but other things, there’s lots of other diseases out there that you’d never even think about. And I think Stomas kind of one of those that until it affects you or somebody, you know, just don’t think about that.

Speaker 1 (48:21):

Yeah, that’s so true. And st There’s a lot of stigma with stomas and I feel that a lot of patients, if you tell them they may need a stoma, they feel like their whole life has ended, how are they ever going to be able to deal with that? And they get very depressed after surgery. And yet there are people that need permanent stomas like your situation, and they’re even children that need it. And I don’t know, do, they’re like TikTok and Instagram accounts of these people. They’re very open about it very. They’re like, we’re a bikini with their stoma. And it’s kind of fascinating to me because back in the day that was not the case.

Speaker 2 (49:02):

Yeah, no. So my day job, I work for what we call a dispensing appliance contractor. So we’re basically a company that we dispensed St stoner and urology products. So that’s why I do the daytime, do marketing for that. But one of our customers, she’s on Twitter, you might have seen her, she’s got Jessica, she’s seven, she’s got a colostomy St. Stoner journey on Twitter, and I think she’s on Instagram as well, but through with her mom. So they tweet and blog all the time about her having a stoma. And she’s so open about it and she’s out there, she raises lots of money to provide stoma bears for other children that are having surgery. But she’s completely like, yep, I’ve got a stoma. Yeah,

Speaker 1 (49:42):

I have a stoma bear. Yeah.

Speaker 1 (49:48):

And so I have a stoma bear and my dog plays, my mom’s dog plays with it. And I had a picture, I think I posted it or something. My friends were only, you would have a toy for your dog that has a stoma, but they’re cute. They’re very, very cute. And there’s so much, there’s so much appliances and tricks and it’s a whole, we had to learn it as a resident. I was very fascinated. I wound care. So I was very fascinated with all the different that the wound care nurses and stoma nurses know how to do. But it’s a very unique population of patients. And the peroneal hernias are a huge negative in those,

Speaker 2 (50:46):

The thing, because you need to give patients sort of as much information as possible when they’re having stoma surgery. But if you tell them too much, you probably would put a lot of people off having a stoma. Because as you said, right, the start a stoma, and I say this to people in it because people think that they’ve done something wrong to develop parastomal hernia and they say, oh, but I followed all the rules. I didn’t lift this, I didn’t lift that. And I said, well, did you cough or sneeze? And everyone’s like, well, obviously, yeah. Well then coughing and sneezing is as risky as lifting 80 kilograms of something. Because if you lift, I will say to people, if you lift things, you lift properly because you’re trying to protect your back so it’s controlled. Whereas when you cough and sneeze, you just do it. And it’s that raise, isn’t it? An intraabdominal pressure that has the problem and people blame themselves. So it, it’s very difficult and it’s like, no, but I think we need to be, I’m more aware of say to patients, no, a stoma is a manmade hernia because it is a hole in your abdominal wall and you can’t bring the stoma out without making the hole. And it just depends. Does the hole stay three finger widths they want it to be, or does it get bigger?

Speaker 1 (51:58):

Yeah, that’s so true. That’s exactly what, it’s a manmade hernia. And at the same time, there are people that I’ve offered stoma reversals, I’m like, Nope, I’m good. I, I’ve learned to live with this. It’s comfortable. I don’t want to deal with whatever the reason was why they had a ST let’s, it was massive diary or something. They don’t want to deal with that anymore. They’re happy with the way it’s been controlled. But yeah, so there’s a great study, I think in 2006 ish, maybe you’re wrong, that showed exactly what you said. Coughing is a huge abdominal pressure generator and sneezing, you can’t even control it right out of your control. Whereas exercise does not usually increase your abdominal pressure. Lifting weights does not really increase your abdominal pressure. And if anything, you’re engaging your muscles to prevent your back from getting injured and so on. Straining is a big one, but if you have a colostomy or ileostomy, you’re not straining because a stool just comes right up through the bag. So that’s one thing that constipation is not an issue for those. But people with enlarged prostates will strain to urinate maybe. But all those little, like smoking, right? Use of nicotine in any way. We have a lot of marijuana smokers in California. They cough all the time from the marijuana smoking. All those are risks to parastomal hernias. So prevention is key.

Speaker 2 (53:41):

And I think telling people about exercise and doing core exercises and things like that, because I know there’s still a lot of snowman nurses out there that I think put the fear of God into patients by telling them, oh, you have to be careful about exercising because you might get a hernia. And there isn’t any evidence.

Speaker 1 (53:57):

No evidence.

Speaker 2 (53:58):

And it’s like you need to, no. It’s like, no, you need to get out there and exercise and work, strengthen your core as much as you can and do as much as you can to help.

Speaker 1 (54:10):

All stomas are placed through the rectus muscle, which is your six pack. So if you can strengthen that six pack, you’re going to strengthen the whole around that stoma. So exercise is great, especially for stomas, right? Yeah.

Speaker 2 (54:26):

Well that’s why prehab is important now, isn’t it as well, especially if your surgery is planned, you can can have some kind of prehab beforehand and try and get fitter and healthier for surgery and then hopefully carry that on. Because I think that that’s a thing that you’ve got enhanced recovery and then you’re in hospital and people are getting you up and moving, you’re about, and then people go home and they sit on the sofa and watch daytime TV.

Speaker 1 (54:53):


Speaker 2 (54:54):

And then people say to them, oh, you need to rest. And it’s like, well actually you need some rest obviously to recover, but you need to get moving a little bit more every day.

Speaker 1 (55:06):

Yeah. So how do patients interact with you? Is it mostly through Twitter?

Speaker 2 (55:11):

Mainly Twitter, yeah. And then obviously when I’m in Facebook groups too.

Speaker 1 (55:16):

Yeah, that’s really lovely. I love that we can have an international discussion and there are plenty of p Do you get a lot of people outside the UK that reach out to you?

Speaker 2 (55:26):

Sometimes. Yeah. I mean I think that’s why Twitter’s good because people are from everywhere and you get to meet people from across the world. But I think it has been great because obviously we spoke on Twitter and we met at EHS and there’s, and EHS, there were so many people that were like, to me, I went to the toilet one time and somebody, oh, I know you from Twitter. Yeah, that’s me. But people do, they get to know you from things like that. But it, it’s good that I think in a way Twitter kind of, it breaks down the barriers I think between surgeons and patients because you can have some really, really good discussions on clinical subjects and be able to give the patients point of view because everybody’s just about equal on Twitter, really. You can button into any conversation and say, well actually as a patient, I think you should look at X and Y. So

Speaker 1 (56:19):

Yeah, that’s totally true. Yeah. And you’re very funny on Twitter. You have a great personality, a fun personality. And how I use Twitter often is anytime I go to a meeting, I live, tweet the meeting. So when I’ll with you guys in Manchester, in in, was it October? Yeah. Yeah. I’ll be live tweeting then too. So that’s kind of my we to do more.

Speaker 2 (56:43):

But that, that’s good for patients, isn’t it? Because you’ve got European hernia, British hernia, and then you’ve got American hernia and all the different of colorectal societies as well. And whether they all have conferences. So as a patient you can follow the conferences on Twitter and you can find out what’s going on there. And then the cutting edge research that you might not be able to read in the journal cause you don’t have access, but you can read about it on Twitter and see who it is that’s doing it. Yeah. And you can learn so much.

Speaker 1 (57:13):

And you can you mention your handle on Twitter is

Speaker 2 (57:18):

It’s actually, no. So my username is Twitter handle is little Miss Ilio ilio. Oh, this is true. Yeah, yeah,

Speaker 1 (57:27):

True. I just know you’re a sobs. You’re Sue Blackwell. What is that? What is Little Miss Ilio? Oh, ileostomy. Yeah.

Speaker 2 (57:38):


Speaker 1 (57:40):

I just got it.

Speaker 2 (57:42):

I joined Twitter so long ago. I think it must have seemed like a good idea at the time when you’ve had the Twitter handle for so long. It’s like, oh, I don’t, there’s no point in trying to change it now. Yeah. At least it says Sue. It doesn’t say nothing else.

Speaker 1 (57:59):

All very good. All right, so I’ll post that on our there. Everyone’s asking about you, so I’ll post it on Facebook and yeah, Instagram as well so that they can follow you. That’s fabulous. Thank you so much. That’s been a great hour.

Speaker 2 (58:17):

Oh, pleasure. Thank you for having me.

Speaker 1 (58:19):

All right, well that ends it for us everyone. Thank you for joining me on Hernia Talk Live. Sue Blackwell has been amazing. Thank you for your time, all the way from Liverpool, England, and I come to you from Beverly Hills, California. Thanks everyone. See you next. Not next week, but the following week, I will be live twinning from a conference again next week. So follow me on Twitter at hernia doc and then this session will be available to you with all other sessions. I think we’re up to 94 on our number of sessions to follow me on YouTube and watch all of these and more. Thank you and thanks again for your time, Sue. Appreciate it. Thanks very much. Bye.

Leave a Comment

Your email address will not be published. Required fields are marked *