What’s it like to live with a stoma?

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I have not been sleeping very well, having nightmares and generally blurggghhh. Woke up early and realised I had a small leak, but big enough to piss me off. I had to change my bag before work, and change duvet cover. I am glad it rarely happens to me and lucky that my husband is great about it all.

I normally like to change my bag when sitting up on the bed in the evening, its comfy and Tomas can get an airing for a good half an hour, so doing it quickly makes me uneasy, I worry about causing a rash because once they start, it takes a bit of sorting and can be unbearably itchy. I am blessed with a spouty stoma and not a flat one, so my skin isn’t too bad.

I go to work and all is good. I usually have to empty my bag about two or three times at work, but it’s not a big deal. I do worry about having a leak there though. I have no bed unfortunately, so will have to change it standing up ,eek.

For no apparent reason my output can be like water for a few hours, this means I usually have to empty a lot more. If you leave your bag for too long, it feels like the weight could unstick it, no thanks. So people, if I say I need the loo, I really need the loo.

I empty a few times in the evening and just before bed. This is usually when Tomas decides to wake up and be noisy as I am nodding off. I will then have a sixth sense at about 5am, and wake up to empty again. This is when my bag could be like a balloon, depending on what I have eaten. I am lucky that I can go back to sleep after.

Living with a stoma can be mentally and physically draining, but when things are running smoothly, it’s not too bad. For some, it can be awful, they have very sore skin, many leaks and really struggle to get the right products or help. For most, it saved their life and you have to learn to live with it.

I change the whole bag about 3 times a week all being well. You get a feel for when to change it, I start to get slightly itchy and like to change it then. I have never showered without a bag, having an ileostomy means I am incontinent, so I get output at any time, fine when you are actually in the shower, but not so fine when you get out and are trying to dry yourself. Same goes for a bath. Bagsare waterproof and don’t come off in the shower or bath, so I just keep it on.

Life with an ostomy has its ups and downs, but I am glad I survived a terrible ordeal and yes it leaves scars, some visible some hidden, but I am here, and I am ok.

 

Travelling with Tomas

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I was excited and apprehensive about going away for the first time abroad with Tomas. I had heard lots of different things, good and bad, lots of scare stories too. I was told my bag would blow up ( possibly not off, just like a balloon) on the plane. I read that the stickiness that held the bag onto my skin would melt, and my bag might come off in the heat. I might be taken to a room in the customs part of the airport and my bag swabbed. All these things made me a bit anxious waiting in the line for customs and beyond.

This is what happened to me.

I ordered a free travel booklet from Charter that had an explanation of my condition in various languages, I needed Greek and that was there too. There was a part that the GP could sign to say I needed certain things in my luggage. I was miffed to note that the GP wanted to charge just from signature, so I didn’t bother. I couldn’t see a problem there, it is obvious what I have. I still took the booklet just in case. ( and in case…. get it?).

Don’t give up the day job, I hear you say.

Anyway. We were flying at 6.40am eek. I packed some of my stoma kit in the big case for the hold, then some in my hand luggage too, with my adhesive remover and barrier spray in the clear plastic bag. ( I would struggle if I didn’t have the big case, as all my other fluids, makeup etc were in there. Not sure I could fit it all in the plastic bag). As we were in line for customs I noticed they had body scanners and most people were put through them. I knew I would have to mention the stoma.

As I walked into the machine I mentioned to the female customs officer that I had a stoma, and she was lovely. She said it would show up and they would probably swab the area too. She passed me to another female officer who was lovely as well. She discreetly took me to one side and just swabbed and scanned with a hand held scanner very quickly over the top of my clothes. She said, “There, no one needs to know”. I was very grateful and sent a thank you tweet to them via Tomas the stoma twitter afterwards.

After we took off, I kept checking my clothes for signs of ballooning, nothing happened. All was as it usually is. I had to empty once on the plane which was fun, as it was very tight in there and my output wouldn’t flush, I had to get some more loo roll and help it down then flushed again. That did the trick. The thought of having to ever change my bag in there was a scary one though, so I feel for anyone in that situation.

The holiday was wonderful and Tomas behaved himself impeccably. I changed him twice in the apartment and that was it really. I ate a fair bit so the bag filled up quite a lot, but my output was exactly as it is supposed to be, to the point that I only needed Loperamide once a day. The heat didn’t melt the adhesive either, and apart from a slight sore bit where the bag edge sits on one occasion, I wouldn’t worry so much next time I go away.

I even sunbathed with my bag out ( with Tomas cover on), I think I saw one or two people glance but that was all. With all the media coverage for ostomies, I don’t really care now.

On the way back through Greek customs, I got my booklet handy in case they frisked me, but they didn’t and I passed through without problems.

Bag ? what bag?

Don’t let it stop you, there is nothing to scare you except your own thoughts.

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What is ulcerative colitis ?

 

 

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Inflammatory bowel disease,or IBD usually refers to Crohns disease or ulcerative colitis. They are thought to be an autoimmune disease where the body attacks itself causing inflammation, ulcers and many other manifestations.

Crohns can affect anywhere along the gastrointestinal tract, from mouth to anus, and colitis affects the colon (large bowel). They are life long chronic diseases, and although surgery can get rid of ulcerative colitis, you may still get other symptoms affecting your body, that are associated with the disease. Crohns disease cannot be cured.

I had ulcerative colitis for about 30yrs, and when I had a flare up I would spend most of my days on the toilet, feeling very poorly indeed. Because the bowel would be swollen and ulcerated, stool would be thin with a fair bit of blood and pus. Crampy pain would accompany a flare, as would tenesmus, this means that we have the most intense urge to go to the toilet even whilst sitting on the toilet, and passing anything does not relieve that feeling.

Ulcerative colitis starts at the rectum which is proctitis, some people think this is a milder form of the disease but it can still be severe in that one area. If it travels into the sigmoid ( between rectum and descending colon) it is proctosigmoiditis. If it involves the descending colon, it is termed left sided colitis and distal colitis. Pancolitis is when it affects the whole large intestine. I started with proctitis, then it moved through the sigmoid with more in the descending colon. In the past I have had it across the transverse colon too.( see diagram) Normally left sided colitis can be treated with medication, but sometimes as in my case, the bowel was so severe that medication didn’t help. You can have fulminant colitis even if it is only a part of the large bowel, as fulminant means that symptoms are very severe with temperature, distention , continuous bleeding and generally in need of aggressive treatment. You can have fulminant left sided colitis.

Ulcerative colitis is assessed by colonoscopy, sigmoidoscopy, MRI , CT scan, barium meal or enema, stool samples and blood tests. Sometimes you may have indeterminate colitis, which means that the signs and symptoms cannot be differentiated from crohns of the large bowel. This is what mine was called, and even after surgery, it was decided it was MOST likely ulcerative colitis and not crohns disease, so I keep my fingers crossed.

Because the disease was pretty bad in my rectum, I wasn’t a candidate for a J-Pouch. This is surgery that connects the small bowel to the rectum forming a reservoir with some of the small bowel. This can enable a patient to use the toilet normally again. I have now had my rectum removed anyway, so no going back.

As I mentioned, colitis can also cause other problems that may never go away, these are inflammatory manifestations of the eyes, skin, liver and joints. Arthritis is common, as are skin conditions called Erythema nodosum ( deep tender nodules often found on the shins) and Pyoderma gangrenosum which are nasty ulcer type lesions that can vary in size, they are found mostly on the legs but have been found on other parts of the body too. Aphthous stomatitis is a type of mouth ulcer found in Crohns and ulcerative colitis patients. Episcleritis is an eye inflammation affecting the episclera.

Many others are often present but too many to go through with this blog, I suppose what I am trying to put across is that ulcerative colitis is much more than a bowel disease.

Mentally, it is a strain when having a flare up. You are unable to function properly , and although you look reasonably ok, you are often very ill. A lot of people put on a brave face as they don’t want to be seen as a moaning myrtle, who is always ill. If you are lucky like me, you have a supportive network around you. I had to rely on many people before and after surgery, and this was the case over the years too. Flare ups can vary , they can be fairly mild and clear up within a couple of weeks, or they can grumble along for weeks, months and years. When I read of the struggle for some people, I wonder why surgeons are not called in sooner, I certainly wished I had surgery earlier. I think on some occasions ,we are left for far too long by medics who are trying but failing to keep things at bay , and won’t admit defeat. I know this is major life changing surgery, and they are doing what they can to avoid it if possible, but I feel that sometimes it is quite obvious what the outcome will be.

Surgery for colitis is removal of the large bowel, rarely they will rest the bowel with a temporary stoma, but mostly its all or nothing. If you are one of the lucky ones, you can be a candidate for the J pouch surgery, although this is a big surgery with its own risks and failure rates. The rectum can be left for re-attachment, or removed. Mine was removed and sewn shut. It all sounds pretty scary, and it was, but you soon get used to it, and for me it was all worthwhile as I feel very well now.

 

Does my bag look big in this? What about the rest of me?

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I thought I would chat about body image. We all worry, me too.

It has come to my attention that we all spend too much time worrying about the way we are perceived by others, and that includes how we look. Now, I am a born worrier about everything so I speak from experience in the subject.

When I was younger right up until I hit 40, I would say I was pretty skinny. So did everyone else. But, although a lot of people said they wished they looked like me, there were some who were downright rude.

One friend said she wished she was thinner, ” Not quite as thin as you though Clare” hmmm nice. How would they like me to say ” I wish I was fatter, not quite as fat as you though” that would go down very well.

I went to see a comedian in Blackpool years ago, and we were a loud table so he picked on us, actually he picked on me. He invited me onto the stage, big mistake.

” lets move the mike stand so they can all see you”

“I am going to tell a joke, you’ll laugh your tits off, oh you’ve already heard it” Yes I know, its funny, but can you imagine a teenager with hangups on that stage? I was distraught.

Ulcerative colitis then appeared, and my body image changed again. Skinny legs and fat belly, lovely. Bloating with inflammatory bowel disease is not nice, I had a few people ask if I was pregnant on many  occasions. This pot belly look lasted until surgery really when I was 49, but I also got more meat on me elsewhere. I liked the fact that my boobs grew, but not my arse or hips.

I have also been “blessed” with pale skin and freckles and moles. I would love to be a nice tan colour but it takes 2 weeks in Corfu laid out all day to go a great shade of pink. Fake tan is better nowadays but I do worry that I have damaged my skin over the years. I have jealousy when I see the perfect bod.

I have crooked teeth, ( I bet you are dying to meet me, I sound gorgeous), I haven’t smiled on a photo with my mouth open and teeth showing for years,except when drunk and I don’t care, so now I am doing something about it. My top brace is going on in a few weeks.

I was about 10 stone 10 pounds before surgery, which is reasonable as I am 5ft 7.5 inches, when I became poorly I went down to under 8 stone and ended up with saggy skin and old persons hands. We can’t win, there will always be something . I started to put weight back on after surgery and got to about 9 stone, I liked 9 stone, I felt ok, my skin fitted again and because my large bowel was removed my belly was quite flat, I thought ( wrongly I might add) that because the bowel was gone, my pot belly would be forever gone. But alas , something else has moved in. I can’t stop eating and am now 11 Stone !!!!???? and my belly is returning. Whats that about???

I turned 50 last year, and about 2 days after, received a flyer for Saga over 50’s. I felt older than old. How could I be fifty? I was in the OAP bracket for SAGA flyers.

I have fine hairs above my top lip, I am not sure whether to have a top lip wax, but I might end up with a red rash, do I keep the moustache or opt for a sign saying ” I had my lip waxed, look here”

Not only am I looking to see if my stoma bag is showing through my clothes, what about all the rest of my baggage?

So far so good with the bum thing

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I forgot to let you know how one of my previous posts “A pain in the arse ” was going.

Very good is the answer. I went to see my surgeon about the small hole that leaked after the proctectomy. It was called a sinus and can heal itself sometimes. Other times they need opening and draining, sometimes they need much more serious healing strategies, like using skin from your thigh and covering the scar with that. I have no idea how any are done and how they work, but needless to say, I hoped it would be the first option.

Well , he said he would book me in for an MRI of the pelvis and rectum to see how superficial the sinus was, and go from there. I had been leaking for months now so was pleased something was being done. My MRI wasn’t immediately and my next appointment was for the end of May, so still a while to wait.

Well would you believe it, the leak stopped dead about a week before the scan, and hasn’t reappeared since. I am pleased and just hope it stays that way. My appointment to see him with the results has been moved to August anyway so its a good job.

So the moral of the story is…. have faith that things will work out usually, and not panic about what could be.

What on earth can I wear?

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I have to say that I just cannot get on with stoma support wear. In all honesty I have only tried the one we get on prescription similar to the above picture. I just find it tight and restricting, my skin around Tomas starts to itch too.I worry that when the bag starts filling, it will squish it and it will leak. I think I won’t be able to tell when it needs emptying. I would like a nice lacy very stretchy and not too tight, band. I have seen some that look nice but don’t want to spend money on them if they are not right, so if anyone has some nice support wear that I have described, please let me know.

I must say, I do quite well with clothes now. For months I wore leggings and that was about it. I still love them for comfort but I have worn dresses and jeans. I have always worn high waisted jeans, as they are much more comfortable than the low or mid waisters that cut into your tummy and you can’t sit down and eat without being really uncomfortable.

I wear skinny jeans quite happily and tights dresses too. I used to think everyone and his dog would see my bag, but they really can’t. It is something that you get over with time.

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I still scrutinise myself before I step out the door, but when I first had Tomas, I wore for comfort and covering up. I thought I had to wear loose tops/tunics and shouldn’t wear tight things as I saw myself as flawed. My only issue with a dress is when my bag starts filling , it flaps about a bit unless I tuck it into my pants, and you can notice it through the dress. This is why I thought a stoma support garment might help, it probably does as far as flattening it all, but I just feel as though it is doing something that I can’t see. At least I can tell when I need to empty if the bag is loose.

As far as sex goes, it is no different than before surgery. ( Except it sounds like a bag of crisps between us ). I would still like a nice lacy something, to cover it, but really want it to be comfortable. I am very lucky that my husband is fantastic and doesn’t see the bag whatsoever. So I am not at all bothered about showing it in front of him.

I still wear baggy or tunic tops, but again more for comfort than self confidence. I am not ashamed of my body and scars, in fact I am very proud of them. It shows what I have been through and overcome.

It is very inspiring to see my fellow ostomates getting on with it and looking fabulous at the same time. I am going on holiday in a couple of weeks and aim to wear my bikini with pride. Watch out for my next blog about flying with a stoma and being abroad.

Bowel surgery – The little things

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There are a lot of , sometimes little , sometimes big, annoying effects of bowel surgery. For example when I awoke from proctectomy surgery, no-one said that the many injections etc in my anus, would mean I might struggle to have a wee. Now these little things would help people very much if they knew beforehand. I thought they had damaged me and the nurse in recovery didn’t really know this would happen either. I drank and drank but to no avail, and ended up in agony while I waited to have a catheter inserted. Needless to say all ended well and the next morning the catheter was removed and I managed to go.

After my big surgery to remove my large bowel, the same thing had happened, but this was a bit more expected. But for a long while I had many strange feelings down that end . Even though you expect discomfort , no one actually tells you how, where and why. You just get the ” you have a gap now and everything needs to fit into that gap”. Yes, but why does it feel weird when I pee? why does it feel slightly numb, and I don’t ever feel the urge to wee? The pressure pain in my bottom after that first op was huge, I had no idea if this was normal or not. When I stood or walked ,the pressure again was awful. Is it ok for me to walk at the moment? will I do more harm?

Is it normal to get the strong urge to have a normal poo? I have since found out that this is very normal, and a year later I still get the urge. It is strange when you feel wind travelling through your bowels, expecting it to come out the normal way, but of course this is impossible.

Why do they use staples to close the wound? I found them pretty painful to have removed, I suppose there will be a reason, I shall look it up.

Got it…. non dissolvable stitches are used in places where body chemicals could cause stitches to dissolve too quickly. Staples are used in areas that are harder to stitch, and when the incision needs to be closed quickly.

Muscular problems, achy bones, these are other side effects of bowel surgery, or even external symptoms of Ulcerative Colitis that you can still get even though the large bowel has been removed. Sometimes I can hardly move with sore bones.

When your scar opens up ( dehiscense). I remember telling the nurse that it really hurt when they removed my staples, especially at the bottom. A day or two later the bottom bit was weeping slightly, I asked if it was ok, and was told that it was normal.Gradually it opened up to reveal a horrible gaping hole that needed to be packed. It was only the bottom few inches that opened up but no one could tell me when it would stop.It did stop but needed to be packed for 6 months before it healed. I am now left with a tough circular blob of scarring there, which is a pest because it ruins the nice neat bit above. still not sure why this happens.

Depression and anxiety are other things that can swoop down on you, or gradually creep up on you. You may even feel ok most of the time, but some times you will feel very low and tearful, this is because you have had major surgery and you need to come to terms with it. If you have a stoma, this is also a lot to take in. It doesn’t mean you are weak, it means you need help and time to heal physically and mentally. I wasn’t aware of how severe these feelings were until I had complications and was in hospital for 2 months. It is also worth mentioning that your friends and family can have anxiety because of whats happening to you, and may also need support from others. They are unsure what is happening and why you are having certain symptoms.

I didn’t know about having a central line in my neck until I woke up, It hadn’t been put in right, so I needed it removing and swapping to the other side. This wasn’t all that pleasant. You get a local anaesthetic and it takes ages for them to put all the wires and leads together. Your neck is a bit sore for a while too, mainly when it is taken out. I was naughty and picked my scab, and didn’t know it was quite deep so have a small scar.

Having many blood tests and canulas can be sore too. Especially when your veins don’t want to play ball. Can I also say that doctors are not as good as phlebotomists, they don’t do them as often so you usually end up like a pin cushion.

I remember a health care assistant coming round doing observations asking us about our stools. the options were , hard, soft, crumbly,pebbly, and a few others that had no bearing on stomas at all. We said it is none of those, but she was insistant that we needed to answer,even asking if we had opened our bowels. Yes permanently .

I can look back and not be horrified by my time in hospital now, I can’t remember the early days anyway. I can say with absolute assurance, things do get better.

 

 

 

Problem solving, and book writing.

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A funny thing happened this week. We went to Manchester as my daughter had an audition for university and my son goes to Manchester Uni, so we killed two birds with one stone and stopped at a Travelodge.

This was my first stay in someones else’s bed, not family. I made sure I had a spare ileostomy bag with ring seal, barrier spray, adhesive remover spray, poo bag. Good, I could go away in peace knowing I had my kit. NOT.

I woke up at about 6am and knew things were not quite right. I felt my bag and it had ballooned again, but because of that, it had come away from my skin, luckily only slightly, but enough to have a small leak. Bugger.

Oh well, I had my kit bag so I went into the bathroom ( I must add that I have never changed my bag standing up, so this was a novelty.I will not be repeating it either ). Luckily I got my fresh stuff out before I took the existing bag off as low and behold, I hadn’t packed the scissors or pre cut my bag. ( you have to do this in order to fit the bag around the stoma).OH NO, what do I do?, I don’t want to wake the family up, but I can’t really go to sleep either. I laid on top of the bed with the old bag still attached but with a slight leak, and tissues stuffed around it. As I lay there for about half an hour, I could feel that my skin was getting a bit sore and itchy, I knew it shouldn’t be left much longer.

There was nothing for it, I got dressed with some tissue pressed around the base of my bag, and went down to the reception.A lovely young man came to the desk ( he wasn’t English so although he spoke very well, I knew it might be a struggle). I asked if they had some scissors I could borrow. ” I am happy to get you them, but I will need to cut whatever you need cutting” said he.

Hmmm , ok ” I just need to borrow them for a very short while” said I

” I can’t give you the scissors I am afraid but am really happy to cut something for you” he repeated.

Right. ” I have a stoma, and need to cut the bag to the right size to fit my stoma”

Silence.

 

He looked slightly confused, then I heard a voice from his office behind him.He went in the office, came back and said. ” My manager says you can take the scissors” LOL

On another note, I feel strongly that there isn’t really much reading material for the very younger 0stomate, or young children who have family members with ostomies. So I have started to write a small book about ostomies, in a cartoon funny way that they will appreciate, nothing too intricate but enough not to scare either. It will be starring Tomas The Stoma, with cartoon pictures of Tomas doing various things stoma related. It would be lovely for your views, so that I can research the need for this. So far the forums I have asked have been a very positive response, which leads me to believe that it is needed or wanted. Should there be much charge? should I see if the NHS would be interested? Maybe another way to get it out there? Please get in touch and let me know your thoughts xxxx

Perineal sinus after proctectomy

Went to see my surgeon today for my post proctectomy review. Because I had the pelvic abscess, my wound isn’t fully healing. It is reasonably common in this type of surgery, to develop a sinus ( hole where there shouldn’t be one, that drains pus or fluid usually.) I have done my usual trick of looking it up on the internet, wished I hadn’t. If it doesn’t heal after the first look ,

He said I need an MRI to see how deep the sinus is before he decides what to do. There is not a big rush as I am well in myself, but because it is a nuisance and could potentially cause more issues, it is best to get sorted. He thinks that he will need to use a probe and it will be a general anaesthetic again. After that, I didn’t really understand what would happen.

These surgeries are a long haul, and take it out of you. I really didn’t know there could be so many complications with it all, and I can safely say, that I have had most of them. This is because of the mess I was in coming into surgery in the first place.

 

I Believe in you

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I have joined a fair few forums and groups to do with Crohns disease and ulcerative colitis , and the overriding theme is not being believed by medical professionals how poorly you feel.

Now, I know this to be true, as I suffered at the hands of a medical professional who didn’t really listen to how ill I felt until it was almost too late. The facts were there, the test results were there, but they were not, because I didn’t fit the Truelove and Witts criteria. Apparently , until your kidneys are failing and you are at deaths door, you are not ill enough for hospital care.

I have an overwhelming need to speak out for myself and others. The Truelove and Witts index is archaic. I am proof that having distal disease can be very severe, enough to have emergency surgery. You don’t need to be on the toilet 10+ times in the day, to be very severe. My haemoglobin level showed It was just on normal, but my iron levels were non existent, which meant that any day I would need an iron transfusion. I began having temperature spikes in the evening, and was losing weight rapidly. Because my temperature was normal when I saw this particular professional, I could see in their eyes they thought I might be mistaken and a bit of a hypercondriac. When the pain was so bad and I couldn’t pee, I was told the person was unavailable and to see my GP. My husband then took me to A&E, eventually seen by a lovely surgeon who said I was very very ill, and needed my colon removed immediately. I also found out that I had sepsis.I had surgery the next morning ( a Sunday) and was in for ten weeks.

I know that the NHS is struggling, and I can say that apart from one person, my experience has been exemplary. The reasons behind that persons decision have nothing to do with NHS failures I am sure. During my ten week stay in hospital, I saw many people come and go on the wards, many I spoke to and I know they were not as ill as I was. To this day, I have no idea why I was treated in this way. I wasn’t given some of the treatments that could have saved my bowel, because they felt I wasn’t ill enough. Have a look at my photos, I don’t exactly look full of beans.These were taken after surgery, 10 weeks in hospital ( which I might add, I had fantastic care by the surgeon and team on the ward).

I read other peoples stories, and a similar pattern unfolds. Terrible pain and bleeding, no quality of life, and yet they are treated like they are a pestering nuisance.

I really feel that the treatment for crohns disease and ulcerative colitis needs a new fresh approach. Surgical intervention, or at least a surgeons opinion needs to be sooner.If a person says they are in pain, just because their vitals are steady, it doesn’t mean it is not true. I struggled with my life for 4 months before it was necessary to help me. Many Crohns and UC sufferers ( yes believe me, they suffer) constantly with symptoms, many can’t go out because of them. They are terrible diseases that are embarrassing for many.

Please please can someone come up with a new system for these patients. If medications are not working, don’t just blunder along with ancient remedies that have no chance of working just to say they are trying to avoid surgery. Surgery may be the only hope that person has.

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