Hi all, first post here - hope I'm in the right place! Sorry in advance for the long post!
5 years ago I was diagnosed with Ulcerative Colitis, had an endoscopy to confirm, and was put onto a course of Octasa to treat it. The symptoms cleared up after a few months, and haven't had any re occurrences since (although still on the same dose of Octasa daily 2 in the morning and 1 in the evening).
I presume the UC could be completely unrelated but about 6 months ago I started with chest pains, like gas was trapped in my chest, often having a dry mouth - and feeling like belching was the only way to relieve it. This also affected my breathing quite badly and at the time was about 7 weeks into a couchto5k running plan. The chest pains came in waves and on a couple of occasions occurred during a run and ended up with me having a couple of full on panic attacks.
On one evening my girlfriend took me into A&E as the symptoms were getting worse, I was given an ECG & blood tests, all came back fine - so my GP has put this down to Acid Reflux and have been prescribed with a course of lansoprazole - one a day. Acid reflux or even heart burn has never really been something I have ever suffered with, so it has all come as a bit of a shock to me and something I feel like I have to battle with daily. The Reflux has also brought on daily bouts of anxiety (again only something I have rarely had to deal with knowingly - only once having a panic attack about 14 years ago when I was 20). Often also struggle to get to sleep on an evening when the acid or anxiety are kicking in. Now average 5-6 hours sleep a night, a big improvement from the 2-3 hours I was managing when it was at its worst.
I have also tried to change my diet since to help battle this, really looking for some advice as I really want to try and get this out of my life so I can start running again! Anything on diet or daily lifestyle would help and be very much appreciated!
1. Completely cut out coffee, now on green tea, chamomile, and lavender tea - (usually all decaff). I do miss coffee
2. Cut down on spicy foods, (still have the odd curry as a treat - but usually pay for it)
3. Trying to drink more water - often have to with a bone dry mouth every morning.
4. Cut out tomatoes and onions as much as possible.
5. Bought a wedge pillow for sleeping elevated and try to sleep on my left side when I can get comfortable.
6. I haven't smoked in about 5-6 years but I do vape daily - have been trying to cut down on this (Quitting smoking also ironically tied in with when I first started with UC).
7. I have worked from home for about 4 years, used to do a lot of long distance hiking on weekends to try and offset my lack of mobility during the week, but this has slowed down since the reflux, I've started to at least try and walk a couple of miles a day this past couple of weeks - but frustratingly even walking does now also seem to trigger the Acid & Anxiety for me for some reason
8. Chewing gum! Heard its good for acid reflux and think it has helped a little.
My GP has told me the anxiety and Reflux are usually related and one causes the other to flare up, so slowly learning to manage both. I've also been listening to DARE by Barry McDonagh to help battle the anxiety attacks - brilliant book btw and has helped a lot.
With the UC I'm still not sure what is going to happen with that - the two prescriptions Im on conflict a little with each other - I'm supposed to take 2 octasa in a morning and 1 on an evening before main meals though have only been taking 2 in a morning of late (also noticed in the small print that this shouldnt be taken within a couple of hours of indigestion medicine) - the lansoprazole 1 a day half an hour to an hour before a main meal. I think I'm finally due a checkup at the hospital for the UC in the next few months (it has been nearly two years since I was last called in) and really hoping they'll see about cutting down the octasa. I am thankful for what it has done to alleviate my symptoms, and maybe a little paranoia but I am always concerned about taking any medication long term, unless necessary.
Any further advice and help is greatly appreciated!
Written by
sHAYM4N
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Firstly, congratulations on your positive mental attitude and the methodical approach you have adopted towards grappling with your problems.
You did not state in what part of your intestine the UC occurred.
Octasa is a salicilate in the same family as Aspirin. I would not be happy taking it for many years duration owing to the tendency of some salicilates to have an adverse effect upon the stomach. Conversely low dose Aspirin has been shown to have a strongly protective effect in reducing heart attacks. A dilemma!
Presumably your GP has continued to prescribe it as he feels it is necessary to maintain you in remission.
Octasa is carefully designed to dissolve at a particular rate such that the active ingredient is only released at the point in the GI tract where it is needed. This function is governed by stomach acid. BUT you are now taking another medication for the express purpose of suppressing your stomach's production of hydrochloric acid. Has this been explained to you and has the timing of doses and/or formulation been altered to take account of this? This conflict can often be reconciled by changing to another brand of the same drug which has different dissolution characteristics (only under medical supervision).
I am sure you will have picked up on the controversy about PPIs. Lifestyle is definitely the way to go.
Why not try walking at a different time in relation to when you take in food, it's actually healthier than running and is great for its calming effect.
[ I do this first thing in the morning before breakfast when I am completely empty]
Try raising the head of the bed 6 to 8 inches, this avoids compressing the midriff and there is no danger of slipping off the pillow.
Diet/Diet/Diet.......fish and white meats, fruit, complex unrefined carbohydrates,
raw and lightly steamed vegetables, live yogurts, sushi, etc. Sure you can fall off the wagon occasionally.
Nicotine ... no comment!
As soon as you feel that your own efforts are giving dividends and that you have gained a measure of control then I am sure your anxieties will subside.
After five years I would have thought you are due for another endoscopy not just to assess the UC but now, to examine the oesophagus and determine if there is any displasia at the lower end, or any other explanation for your dyspepsia.
Here are some statistics - for what they are worth:-
On Mar, 23, 2017
50,352 people reported to have side effects when taking Lansoprazole.
Among them, 682 people (1.35%) have Anxiety
Could Lansoprazole cause Anxiety?
Time on Lansoprazole when people have Anxiety *:
< 1 month: 31.58 %
1 - 6 months: 52.63 %
6 - 12 months: 7.89 %
1 - 2 years: 7.89 %
2 - 5 years: 0.0 %
5 - 10 years: 0.0 %
10+ years: 0.0 %
Gender of people who have Anxiety when taking Lansoprazole *:
female: 58.37 %
male: 41.63 %
Age of people who have Anxiety when taking Lansoprazole *:
Wow what a brilliant reply thanks - real eye opener!
"You did not state in what part of your intestine the UC occurred". Unfortunately I'm pretty sure I was never told (or cannot remember) to be honest I was told very little after the endoscopy by the hospital or my GP. I did ask if this was something I would have for life, and neither really received an answer for that, felt it was all brushed over really
"I am sure you will have picked up on the controversy about PPIs"
I did, but havent looked into it closely, my girlfriend told me about it because shes been on omeprazole for quite a few years. She did go to see her GP last week to ask about it, and was pretty much told that it has no foundation, and she is fine to carry on with them - so she has been! Really hard to know what's for the best, but mainly why I want to do everything I can about it through lifestyle.
I can't put the anxiety down to lansoprazole being that I had at least a couple of anxiety attacks prior to it being prescribed, but it is worth knowing thanks! Currently planning to see how I manage without and hold on to them for any days I have that are particularly bad.
Interestingly I was listening further to the anxiety help audio book Dare (Barry McDonagh) the chapter last night was covering symptoms and acid reflux. Was brilliantly explained to me, the symptoms matched almost perfectly (feeling like having to control every breath - almost like being on a planet with a different atmosphere etc) Also cant remember it word for word but he explained the connection very well too. Something about the oesophagitis when inflamed can cause nerves to send signals haywire on the breathing front. Just hearing that helped immensely to understand.
Certainly willing to try everything I can to heal this naturally so thanks for the advice on diet, unfortunately I'm useless in the kitchen, so have a lot to learn! Fortunately I do like a lot of different foods, (apart from the sushi! - yet hah!) My girlfriend also suffers from IBS, so she is good in the kitchen and we'll manage with main meals hopefully. Lunch times are usually harder for me to think of things, but trying to keep things basic, atm usually having a sandwich (chicken mayo, tuna) a fruit smoothie and carrots with humous. Lack of imagination see!
"After five years I would have thought you are due for another endoscopy not just to assess the UC but now, to examine the oesophagus and determine if there is any displasia at the lower end, or any other explanation for your dyspepsia"
Definately! My prescription was actually declined by the doctors a few months ago, saying that it was due to the length of time since my last checkup - they sent a request to the hospital and I believe they said I was due within the next 6 months, so will try to push them on that before I head out on holiday at the end of the month. Again many many thanks for your advice!
I think that resolving the oesophagitis can be quite a long term thing. One always has to be careful about paying too much attention to individual studies but I noticed one recently that indicated that it typically takes five years before the oesophagus 'normalises' onlinelibrary.wiley.com/doi...
So I think you do need to persist with treatment, and not hesitate to go back to the doctor for a further review if things do not seem to be working properly, or you notice adverse changes. There may well need to be a further endoscopy in due course.
The danger is that you develop Barrett's Oesophagus, and there is then a need for surveillance to make sure it does not develop into cancer. But you do not appear to be at that stage yet, and may well never be! Lots of people have this condition that does not develop into cancer but you need to be a bit careful.
Relaxation techniques (there are quite a lot of variations - choose one that suits you) can make a difference to the tension and anxiety levels.
This was a fascinating study, albeit with an insufficiently large sample base to justify any major policy revision, as yet.
I would take issue with the rather sweeping statement in conclusions
" Accordingly, the acid component of the refluxate seems to be the pivotal component for the restoration of tissue morphology and epithelial cell proliferation rates. "
given that there has been no attempt to segregate for a possible variation in the toxicity of Bilirubin or Pancreatic components or Pepsin when pH has been raised by the prescription of PPIs; the wrap obviously having no bearing on the acid/base mix below the Z-line.
Many thanks for that Alan, certainly will try to keep things in check. Will actually book another appointment with my GP I think to discuss the octasa/lansoprazole see if things need to be changed, and push for that next hospital appointment!
I have read your post and sympathize with your problem on (reflux & axiety) although my problem of reflux in particular has been a daily occurence caused by (stomach cancer) of which i had a total gastrectomy 'total removal of my stomach' 9 years ago, since then reflux has been a constant and daily occurence which i find is irritated more by dairy products, tea, coffee, pastry, biscuits, bread etc.. i also have to sleep in a sitting up position to reduce reflux in the night..i have a list of do's & dont's that makes life easier for me..the past 9 years has been a learning curb for me as what suits one does not suit all but i am always willing to try something new in order to make life easier..i have found that by talking to others and sharing your problems can help..i was given a lot of different medications in the past which did'nt work for me including lansoprazole...i bake and cook a lot of my own breads , cakes, meals etc which have helped tremendously have you tried cutting out or cutting down dairy in your diet? I'm quite happy to help with any questions you may have?..keeping things simple can change your life completely..
Many thanks for your reply Suzy, and sorry to hear what you've been through also, it certainly helps put things into perspective. Sure it has been a massive thing to go through, but equally amazing and inspiring to hear how you've managed your lifestyle since!
Dairy wise, I don't eat much of anymore - typically before I started suffering with this I did drink a lot of coffee, cereal with milk, and cheese mainly only if I was treating myself with a pizza/italian.
Now coffee is gone, italians have been self banned (also due to tomatoes), so the only dairy I'm getting that I can think of is cereal in a morning/occasional supper and the very rare actimel yoghurt. Something I will definately keep an eye on though.
Pattern for me seems to mostly be effected by how much I eat, if I snack smaller portions through the day I tend to feel better - but 10-20 minutes after a really filling meal and I pay for it.
I do often eat bread for lunch and breakfast (if not cereal) but will try to cut that down as well, my girlfriend suffers with IBS so rarely has bread, I just need to figure out some substitutes!
Before starting a vendetta against dairy you need to think ( and plan) very carefully as to how you will get your daily calcium.
Failure to do this can have serious consequences ....I have three collapsed vertebrae to remind me of the penalty for getting it wrong! For osteoporosis read pain, paralysis, posture and shrinking height; to say nothing of hips and knees to come later on.
The Lactose content of milks is as follows:-
Unprocessed cow milk is about 4.7%, goat milk 4.7%, buffalo 4.86%, yak 4.93% & sheep 4.6%. Note that reducing the fat content (say- semi skimmed) increases the Lactose content since it is water soluble.
The bacteria in live yoghurt and aged hard cheeses have digested the lactose, reducing its concentration to almost zero; if those foodstuffs still give intestinal discomfort then it must be the fat content.
Most folks with European derived genomes retain some capacity (reducing with age) after weaning to continue producing Lactase, the enzyme which allows the duodenum to absorb the milk sugar Lactose, a close relative of Glucose.
Lactase supplementation might be one way to go.
Alternatively a careful re-balancing of intake may suffice:
calcium-fortified soy milk (299 mg per 8-ounce serving)
calcium-fortified orange juice (261 mg per 6-ounce serving)
firm tofu made with calcium sulfate (253 mg per 1/2 cup)
Brilliant thanks! Was on the soya milk a while back, so will give it another try and seek out some with calcium. Will try it with cereal and drinking a little neat in a morning
Hello gutlesswonder, i'm not saying that anyone should stop eating dairy..i was just asking if sHAYM4N had tried cutting back on dairy and if so did it help him!!..my daily calcium comes in substitute meds and injections i also have stage 4 osteoporosis/arthritis thats been brought on by having a total gastrectomy..i am at present trialing new drugs to help build bone and reduce the pain i suffer 24 hours a day/ 7 days a week there has been mention of bilateral surgery on my hips and knees i also have a facture in the lumber area of my spine, also i have already lost height..the past 9 years has been trial and error including taking soy milks and substitute drinks yougurts etc to help me, that continues to this day..i was simply trying to help someone with a question that was asked about reflux..i also mentioned that what works for one person may not work for another..
Thank you for reply sHAYM4N i wish you all the very best for the future..
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