hiatus hernia

[PamJCam]

I have been on prednisone since January 2017…it seems a lifetime ago☹️ I was put on Alendronic Acid which in turn gave me a hiatus hernia/GERD (2019) ...the consultant I saw said he was positive it happened because of the AA…☹️ It has undoubtedly had a major affect on my life making PMR almost acceptable!! I have been on Lansoprazole for several years but desperately want to get off it …and prednisone!! Anybody out there have a similar problem? I’m trying to find out how successful the operation is…when I saw the consultant he did not push for it all and said if it’s successful it rarely lasts… ☹️ Many thanks in advance 😄

[piglette]

Did you actually need the Alendronic Acid? I have coated pred tablets so did not take Lansoprazole.

[PamJCam in reply to piglette]

I was on the borderline of having osteoporosis so the doctor thought it best I had it… if only I had known what it would do…. I have the coated Pred tablets as well. I need the Lansoprazole for the hernia.

[piglette in reply to PamJCam]

Oh fair enough if you need Lasoprazole for something else.

[Sharitone]

I only had AA for a year before it was swapped for Denosumab because it was giving me stomach problems. I have had Omeprazole for 4 1/2 years and have tried to reduce the dose twice this year, but always had to go back to the original dose. I would love to get off it, as the PIL lists one of the side effects as nightmares, and I get far too many of those. I questioned it with the GP, but he said he had been on it for 5 years, and was not worried. His opinion was that 3mg of pred was enough to cause a sore stomach. Probably not the answer you wanted☹️

[PamJCam in reply to Sharitone]

Do you have the coated Pred tablets? I am down to 6mg, tried 5.5mg a few weeks ago and felt absolutely awful so after nearly two weeks I went back up to 6….😢

[Sharitone in reply to PamJCam]

Yes, except when the dose I am on involves taking a quarter of a tablet, and when I was on high doses and foolishly asked for plain 10s just because I didn't want the faff of taking 12 pred tablets.

The stomach issue is very hard to control. The hayfever season is making it a lot worse for some of us. Some people also find lactose-free milk helps. In short, I sympathise, but I haven't found any answers yet!

[PamJCam in reply to Sharitone]

I’m lactose intolerant so already doing that without knowing!! Thanks for your advice.

[PMRpro Ambassador]

Which operation do you mean?

[PamJCam in reply to PMRpro]

The one to repair the hernia…I understand there a new operation that goes down through the mouth, but I’m not sure of the success rate and if it lasts…. Takes 6-8 weeks before you are back to normal and can eat normally again so I understand…

[PMRpro Ambassador in reply to PamJCam]

TIF - transoral incisionless fundoplication it is called, Don't know much about it.

The other options probably take much longer for recovery - and all of them you must comply with the post-op requirements or you risk failure sooner rather than later.

[PamJCam in reply to PMRpro]

thanks for that👍

[PMRpro Ambassador]

The usual figure quoted for success rate is over 90%. However- there are various ops and I doubt any would be called total cures so if patients don't comply with recovery instructions they will fail and there may still be foods that cause symptoms. The patient will probably blame the surgeon.

My sister in law had a fundoplication some years ago and as far as I know it changed her life. Her digestion isn't anything like as robust as mine - but it is great compared to what it was!

[PamJCam in reply to PMRpro]

Thanks for that I’ll check it out 👍

[suzy1959]

I have had PMR since 2012 and currently reducing to 8.5 mgs, the lowest I have ever been. I was diagnosed with a hiatus hernia, gastritis and oesophagitis in November and had to have the treatment three times before it worked. So relieved when it did! My main symptom was nausea and it made me completely miserable.

I am just in the middle of a flare up and having to double my dose of Esomeprazole. Think / hope it is working.

I only took AA very briefly so I don’t think that was the cause for me.

A friend of mine had an op that puts a kind of ring of ball bearings around the oesophagus. I saw her a few months after and she was quite happy with it after 8 years on Omeprazole.

[PamJCam in reply to suzy1959]

So do I understand correctly that after a procedure you still need the drugs? Your friend sounds lucky with her procedure, hope your flare up goes soon.

[suzy1959]

Thank you.

No, as far as I understand it it enabled her to stop the Omeprazole after 8 years on it.

[PamJCam in reply to suzy1959]

Sorry I misread what you said, so glad it worked I’ll have a look into that one as well. Many thanks

[RedRum1968]

not sure if it’s entirely helpful but I developed PMR at 55 years old in April 2023 and have had a hietus hernia since I was 17. I refused AA and only took DCal due to the worrying side effects on my stomach. I have to say through my whole PMR journey stomach problems (acid reflux) were the worst. Because of this I completely changed my diet to extremely lean with no carbs and very little sugar and no processed food (very boring!) but I’m now off steroids (a week ago) and everything is going well and my stomach is pretty good. I was surprised at how quickly my diet improved my stomach issues. Although now off steroids I’m determined to stay on this diet as it works so well for me.

[hurryupharry]

I have an epigastric hernia, it arrived about 10 months ago. By coincidence I had to have my gall bladder removed at the same time. I have had pmr since 2015., I didn’t take alendronic acid and have only started omeprazole since the op to remove my gall bladder. I have tapered down to 1/2 mg of pred and just started the slow taper to zero. I don’t know if this will help but it has helped me. My gp seems reluctant to refer me for surgery to sew up the hole, probably as I have had a few interventions over the last couple of years and he perhaps thinks I need a bit of time to get stronger. I have found the pains of the hernia and the post gall bladder op really uncomfortable. I thought maybe I could adjust my diet to see if it would help. It’s only been a short time but I decided that either dairy or gluten or may be both were probably not helping. So i stopped dairy products. I have started using oat based milk and yoghurt. I have to say that the pains have reduced considerably. I would still like to have the hernia repair op but I’m not going to ask for it, unless my insides get in a knot. Sorry that was a bit of a ramble, but maybe a dietary change may help you. Good luck I hope you find a solution as I know how painful it can be.

[MacNa]

Hi , read your problems with great interest. I was never able to tolerate AA , my doctor at the time told me not to worry about taking it . Like you I had a large hiatus hernia and I had the operation with great success, although it took me a couple of years to convince my consultant that I needed it, after tests which involved having a gastric tube put down though my nose to see how big it was , it was reported as sizeable. After waiting another year it was finally done, the recovery is a good couple of months before you can eat small meals again, just have to have a very liquid diet for the first couple of weeks and then onto very soft mushy diet . It got rid of all the problems related to hiatus hernia but even today I can’t overeat otherwise I get regurgitation . My argument with consultant was that I’d rather have it done as fit and healthy then and able to cope , rather than leave it until older and suffering with Gurd .

Big decision to make about it but very worth it .

Good luck

Marie

[PamJCam in reply to MacNa]

That’s really interesting, the size of my hernia was quite small when I saw the consultant so perhaps that’s why he didn’t think it was worthy of the operation. Thanks for your reply.

[PMRpro Ambassador in reply to PamJCam]

I asked my daughter who works in endoscopy - and she says that dietary and lifestyle measures are always the first approach since in fact that may do all that is required and may still be required even after the operation. If they work on their own - you have saved the risks associated with all operations.

[PamJCam in reply to MacNa]

I am lactose intolerant so I already had to watch what I was eating and obviously more now. Thank you for your reply, it really helps knowing what other people go through with this…not nice at all for you but can be helpful in making a decision. Thank you

[Ana-16]

Yes! Alendronic acid gave me a hiatus hernia. Have been on omeprazole ever since and have had to have Zolondronic acid infusions for my bones. Not great but better than consequences of leaving problems untreated.

Best wishes

[PamJCam in reply to Ana-16]

You are first person that has had this problem, it’s so annoying isn’t it!!☹️ I refused the infusions and I’m trying to do it with my diet and vitamin supplements 🤞 Drugs can be a nightmare but also can help you. Thanks for your reply.

[WhatNoCarbs]

My husband has terrible problems with reflux, so I can sympathise with your post. Both my husband & myself have hiatus hernias. My one doesn’t seem so bad going by the reflux issues. I have been on AA for 1.5yrs now, but was advised of the hernia some years before. My husband advised me away from omeprazole if possible because he just cannot get off it after many attempts, so I’ve just made do with the occasional Rennie (fortunately that’s enough for me). I’m having a rethink about being on the AA now!

Are you sure the AA causes a hernia, not just increases acid or weakens the muscles so causing the reflux and that you already had a small hernia? In my case I didn’t know about the hernia until I had an investigative procedure for something else).

That aside there are many things that you can try: lose tummy fat, eat very low fat meals, eat slowly, no big meals before bedtime, low acid meals, no fizzy drinks, no caffeine drinks, raise pillow up in bed, attempt to reduce stress etc. Hope that list helps - all the best.💞

[PMRpro Ambassador in reply to WhatNoCarbs]

If you have a confirmed hiatus hernia, that is a direct contraindication to AA or any bisphosphonate in tablet form. It increases the risk of oesophageal problems. Infusions as zolendronic acid or one of the other bone meds. And the GP should KNOW that.

[WhatNoCarbs in reply to PMRpro]

Another GP at the same surgery was keen for me to go on omeprazole to counter that - if that makes sense. Luckily reflux hasn’t been much of an issue for me so far in comparison with my husband. I’m hoping a recent DEXA scan means that I can come off the AA, which would be a relief.

[PMRpro Ambassador in reply to WhatNoCarbs]

Omeprazole doesn't cut the mustard when you already have a problem, Pred plus omeprazole is to reduce the risk of something happening, You should be on zolendronic acid infusions, 3 at yearly intervals, and NOT AA.

[WhatNoCarbs in reply to PMRpro]

Oh! See what you mean - sorry! I’m due to see the GP about the recent DEXA, so I’ll ask about that. Thanks and much appreciated.

[Pr0jection]

I have had stomach problems most of my life, probably due to stress (real or imagined). I had my gall bladder removed back in the 80's with key hole surgery and everything went well. However, I still suffered from the occasional bout of gastritis and started taking omeprazole for about a year. Just before I was diagnosed with PMR I had several flares of gastritis. I had the usual tests and found I had diverticulitis as well as gastritis. After I was diagnosed and put on prednisolone I decided to start taking two things. 4 prunes a day and 3 small glasses of goats kefir (morning, noon and night). I also cut down on carbs, sugar and anything that was hard to digest. I have rarely had any problems in almost 4 years.

[PamJCam in reply to Pr0jection]

I do think diet has a big effect on us generally.

[Seekingasolution]

I was diagnosed with a hiatus hernia although I think it was mild. I was told to work out what it was that triggered it. For me it’s carbohydrate so any bread for example ( lovely sourdough with my home grown tomatoes, olive oil , basil leaves and rock salt ) I know I’ll probably suffer !!

I take pred , coated at higher doses and no omeprazole. Down to 3 mgs again now. I think I was also hugely stressed when I had this problem. I was nursing my much loved, terminally ill mother at home at the time. I’m calmer now