I wrote here a few week's ago because I am worried about my hernia especially after speaking to my Consultant who scared me to death! My hernia is 10 cms and the symptoms are getting worse. The Consultant said that they won't operate because it's too big and as I have had a Lobectomy due to lung cancer there would be problems with the Anaesthetic and I might not come through. The operation would probably take 4 hour's or more because it's such a " massive " hernia! I have terrible sickness usually about 2 - 3 a.m. and I am now on 3 Lansoprazole a day and sometimes, Famotidine at bedtime and Gaviscon. Sometimes even all of that doesn't stop the sickness! I also have an Underactive thyroid, Diverticulitis, Osteoporosis and Osteoarthritis! This has all happened since I was misdiagnosed with cancer for 15 month's . Cancer for 15 month's which was on an Xray.....but no treatment is no fun let me tell you, especially when the medic's make out that you are neurotic ! I'm not!
I was really scared yesterday because the acid was awful despite Lansoprazole and Gaviscon and I was sure that I could feel something moving in my abdomen and the pain was awful and didn't ease up till late evening. Today, the acid has calmed down but the pain is still bad. Should I stay in bed and rest or should I get up and move around? I have no help or support from medic's here and I'm not the only one to complain about that ! We are left to cope on our own. I am so grateful that I found this forum because I have had so much help and advice from people here for different reasons. Does anybody else here wake in the middle of the night coughing and then being violently sick for an hour or more and being left with really bad pain from the hernia? My teeth have fallen apart because of all the acid but possibly also because of the Osteoporosis. Also,has anybody here had a 10 cm hernia and had fundoplication? Is it really dangerous ? I am becoming quite depressed and I'm beginning to lose my fight at times which is not like me but having 2 fractured vertebrae as well is , also,so painful. Just now everything hurts! What a moan ! Apologies! I would be grateful for any comments or advice. Thank you.
Best wishes,
Danni
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Danni54
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Your medical history is complex . I had a Nissan fundoplication as I knew long term taking of Lansoprazole wasn't advisable . 2 patients I spoke to in a waiting room had both developed stomach ulcers taking this so my on line reading too - which can drive you crazy was actually true in this case . I am a new person after the Nissan but I didn't have secondary issues. I am unsure how wide my tear was but I was told my surgery wasn't text book after 4.5 hours in theatre. I would ask your GP about movement / exercise . I joined the PARIS scheme afterwards which was guided exercise . I was also told to keep my weight / BMI at a 'respectable ' level and this was the best advice . I would ask to see a dietitian to ensure food isn't fighting against you . My strict liquid diet for a month afterwards was followed to the book and triggered weight loss and helped my digestive system . I feel diet and movement may be a good focus but please get advice . As for the op I would ask your GP what you need to be working towards before surgery would be a consideration or if this is too risky what can you do for yourself to improve your health .
HI. Thank you for your reply. My Gastroenterologist told me that they don't want to operate because the Lobectomy would make being under anaesthetic too dangerous. The hernia is so big that the operation would take a long time and put my remaining lung's under pressure! I do need help and advice on what I do for the 2 fractured vertebrae and the Osteoporosis and I know that exercise is good but the more I do the worse the pain gets . Vicious circle. I used to walk our dog's every day for 2 - 3 hour's before the cancer but I feel so useless now and when our last beautiful, amazing dog died , I haven't been able to have another because I wouldn't be able to give it the attention they deserve.
So sorry. I'm in a big , black hole just now! Had better go and drag myself out before everybody gets fed up with me!
Please take care and I will talk to my Dr. about Lansoprazole and alternatives. Thank you again. Wishing you all the best.
Danni I don’t think there is much I can advise, post surgery I went through all the proton blockers and H2 blockers, the only one I stuck with was Famotadine, I found that was helpful without too many side effects. But I had no hernia I was just tying to control reflux due to physical position, inability to lay flat.
HI. Thank you so much for your reply. I have been in bed with bad pain from the Diverticulitis and the hernia, so, apologies for not replying before. I have to sleep with 4 pillows and even then I still have night's when I'm being sick. The Consultant rang me a month ago and told me that my hernia is " massive " and they won't operate because it's too dangerous for me to have the repair as the hernia is too big but there's a chance that the hernia will become critical and I will end up being an emergency patient! What fun and how encouraging! I don't have a high opinion of our Gastroenterologist's for various reasons!
The last time I had an endoscopy my hiatus hernia was 1 1cms, but as that was in 2019 it could be even bigger now! I also have lots of other problems, so I can only tell you how I manage. I take two Lansoprazole a day and have for a long time, I don't lie down to sleep, I sleep propped up on six pillows. Lying down is impossible for the same reasons you've listed, but also because one of my other conditions is Bronchiectasis, so I can't breathe if I try to lie down!
Personally I wouldn't stay in bed as I think that would make things worse, but that's up to you of course. I also can't have any operations, mainly because of my chest issues making it too dangerous. I don't sleep well and I do a lot of coughing again because of the Bronchiectasis and also Sjogren’s Syndrome, the dryness of which now goes down my throat and I think it's making my lungs worse. When I have really bad bouts of coughing, the only way it stops is me being violently sick, which I agree is horrible
The only other thing I'd like to mention is the Lansoprazole itself. Do you take tablets that you swallow? I have different ones. Mine are called Zoton Fastabs and they are orodispersible. This means I put them on my tongue and they dissolve. I think they work much better as the create a coating on the Oesophagus as they go down (I also have Oesophagitis and an Oesophageal Web, so everything is connected.) I think you should ask your GP if you could change to the Zoton form of Lansoprazole, as like I say, they're so much better. I always take mine well before I have a meal as that works better too. I put one out at the side of the bed and take it any time after 6am, this way it's had time to do it's job before you think about having your breakfast. The same with my evening meal, I take it any time after 3pm.
I know it's not much but I hope these minor changes will help you. Mainly changing to Zoton Fastabs and sleeping propped up, it's the only way I can manage. The configuration for my pillows is two flat on the bed, two propped up on either side (creating a letter V, meeting in the middle at the top, one across in the small of my back and the last one sort of above it for my head so I can pull it into my neck, as obviously you've on your back not your side.) Pillows done like this is called an armchair and I do hope it makes sense to you.
HI. Thank you so much for your advice. I can't believe how we are going through such similar thing's and I know this probably sounds awful and I don't mean it too but it's so good to ' speak ' to somebody who understands! I have 4 pillows and have a similar layout and I have tried the dissolvable Lansoprazole but they made me feel sick! What you describe after the coughing is exactly what happens to me . The burning starts in my throat and I wake up coughing and I know that I'm going to be sick , so, get up and get to the bathroom and I'm coughing and coughing and in between the bouts , I'm being violently sick and this goes on for over an hour and it hurts my stomach so badly. I have been let down so badly by the medical profession here because they have known about my hernia for a couple of year's and they have known that it has been getting worse but now say that it's too big to operate. The mistakes by Dr.s and Consultant's has been endless and horrendous. I won't rant too much here because it's in my profile but I feel so let down especially by the Gastroenterology Department. The Consultant who found my lung tumour for the 2nd time is the only Consultant that I trust but he is a Thoracic Consultant. He is my hero!
I haven't heard of Sjogren's Syndrome but will look it up. Ihad support when I had the lung cancer and Lobectomy but once I had the operation the support stopped and thank goodness I had amazing support from the Lung Cancer Forum here. This site is fantastic and I don't think that I would have got through without the support from people here! I know that Covid put awful pressure on the NHS but it put a lot of pressure on those of us who are very ill and there are times when I get scared. Why do people and the medic's think that cancer is the only frightening disease and the only one that can kill you ? I have gone through 15 month's of having lung cancer which was ignored and only found again because I had pneumonia and was rushed to hospital. So far, I have survived but have been left with multiple health problems some of which are serious and very painful.
Oooops! Soapbox again! Sorry! I am so grateful to everybody here and will take on board your suggestions. Thank you again. I was so active before the misdiagnosis and now feel like a pathetic lump ! I wish you all the best and again I'm so grateful for your help and advice. Please take care.
The same thing happened to me! I ended up going to ER with Graves' Disease (unknown to me) and the doctor comes back that I'm hyperthyroid and I had the same kind of cancer as you, and apparently, I had it for an estimate (they really don't know) of 6 months. I had a lobectomy, and now I'm still dealing with being overweight and I, too, have a Hiatal Hernia. I have no clue how to treat it except by trial and error. If I drink homemade lemonade with monk fruit sugar (I'm prediabetic) and one lemon, it seems to help with weight, cholesterol, and reflux as it helps with intestinal issues.
With coughing, I use prescription codeine (i take a little sip from a tiny sample liquor bottle that I reuse for cough medicine). Optionally, CBD oil works wonders to stop coughing. I place a toothpick with just a tiny bit of the oil under my tongue and it stops the coughing fast. It seems to last a few hours. I don't know how big my hernia is, but I will find out soon. I'm going through all kinds of tests (hoping not to find more cancer) to see how bad it is and if the rest of my intestines are functioning correctly.
Hi Sweet! Couldn't resist calling you that because you do sound sweet or lovely! I think we are parallel sister's and can't believe the similar thing's that we have been through! I'm late replying to people here because I've been in so much stomach pain for a couple of day's so I must reply to the other's here who have helped me and thank you for replying to me. I have had a few day's of really bad depression as well because I was so ill with the undiagnosed cancer and none of the medic's believing that I felt so ill. I thought that the Lobectomy would make me feel better and that I would get some of my life back. That was a joke because they had left me for so long with cancer and no treatment, it's left me with multiple health problems. I have Diverticulitis so with that the hernia and the fractured vertebrae, the pain is indescribable!
My husband and a couple of friend's have been trying to persuade me to take CBD Oil but I've been nervous about interaction with my mountain of medication! Telling me how you take it sounds good so I will try that. Do you have good Dr.s and Consultant's? How long did they keep you in hospital when you had your Lobectomy? I was in for 5 day's altogether but I had to go to a hospital which was 4½ hour's away so the journey home was pretty awful but I was so happy to be alive and going home!
Please let me know how you get on with your test's and scan's. I take Lansoprazole 3 times a day and Famotidine at night but sometimes even that doesn't work and I still wake up coughing and being sick but not as much as before. Hopefully your hernia isn't as big as mine ! It's so nerve wracking when you are waiting to get test results to make sure that the cancer has gone. I have my 4 year Xray in January and have been clear for almost 4 year's.....YAY ! I still get a bit nervous though. We have to be so careful about what we eat because of the hernia. I don't eat after 6.30 p.m. and I'm not supposed to drink fizzy drinks but I love Lemonade! Bad person! Also, no spicy food ! I I don't drink alcohol or eat spicy food but other thing's affect my stomach. I wonder whether Thyroxine affects weight as I've always been skinny but now , my middle is podgy! I was on Omeprazole for year's but medic's are now saying that they are bad to take! Please don't lift heavy thing's and bending especially after a meal can aggravate the hernia. You , maybe, know all these thing's so, apologies if I'm being a know it all because I'm, truly, not !
I see that you are in the States and I know it can be difficult treatment wise as I have a few American friend's a couple of whom are struggling to pay for long term treatment. Please take care and keep in touch . I hope that your test's are clear and that your life is healthy and happy.
Have written too much.....as usual! Sorry! Take care and I'm sending you all good wishes.
Ask for a second consultant's opinion or pay privately for a one - off consultation if you can afford it. I saw two heart consultants - not interested - saw one privately cost £178. Sent me back via NHS for tests and diagnosed 3 faulty valves. A small amount of sodium bicarbonate dissolved in tepid water counteracts acid, but don't take it near time of lansoprazole or tou
Hi. Thank you for replying and the advice...I think the medic's think I'm slightly mad so foaming at the mouth would confirm that !! I'm late replying because I haven't been feeling too well and had to go for a lung Xray yesterday to check that the cancer hasn't come back. The Radiographer called somebody through to check the Xray which made me a bit more twitchy! I had thought about having a private consultation so I must look for a good Consultant but will wait till I get the results of my lung Xray. I had a phone call from a Pain Consultant who was really good and he seems determined to help me . Thank goodness I seem to have found a medic who cares! He is going to arrange for me to see a Physiotherapist and arrange for me to find a Support Group for cancer patient's . It was so good to talk to a medic who actually listened and cared. I have bicarb so I will try that.
Thank you again. Take care and sending you very best wishes,
I've had a large HH since my esophagectomy in May 2014. My surgeon was eager for me to have it repaired, and I had a very respected hernia surgery specialist do the surgery in 2016, but it opened up again soon after. Now I'm told it's irreparable so I'll have to live with it. Rarely if ever causes problems but doc tells me to pay attention to any possible symptoms for blockage/twisting of my colon (which now resides partially in my chest!)
Hi. Thank you for telling me about your awful experience. I'm so sorry that your operation didn't work but I'm glad that it doesn't cause you much trouble. I have had terrible reflux, coughing, awful burning and then I'm sick for over an hour and it hurts so much. I have 4 pillow's and don't eat for a few hour's before I come to bed . I also have a lot of pain especially if I overdo thing's . I have been told about blockages etc. so it feels a bit like a ticking time bomb but we have to put it to the back of our mind's don't we. Do you get pain if you lift something you shouldn't? I really have to stop lifting heavy stuff but I have always been stubborn and hate giving in ! I have been told that they don't want to operate and have been waiting for the Surgical team to phone me but the way our hospital works that might never happen! Having the pain from the fractured vertebrae is bad enough but the stomach pain is awful as well and when it's bad even the Opioid's and Morphine don't help . Just have to enjoy every minute of every day and pray that nothing more happens!
Please take care and I hope that you keep as well as possible. I'm really grateful to you for letting me know what you have been through. Wishing you all the best ,
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