Hello All, I've not been on here for a looooong time as my LC has been relatively under control and my diet has largely remained the same as I believe that NSAID's are the main trigger. However, after a horrible 14 weeks of illness and trying everything else I suddenly had that "lightbulb" moment and thought to check with the knowledgable people on here.
I can tell you the exact date of the beginning of this episode - 1st August 2017. On that day, I was changed from oral methotrexate to injection ( I have Psoriatic arthritis) and at the same time I had a steroid injection. Within a couple of hours I began to feel unwell - headache, nausea and generally feeling ill. My brother was getting married on the 4th August and as my mum died 18 months before that, I wanted to try to make it as great a day as possible for him - he was really close to our mum and I'm sure he was missing her at that time. So, although I wasn't feeling the real worry of the wedding, I'm sure that I was a bit stressed but happily so. Anyway, I know that I didn't have time to feel unwell as we had family and friends coming to stay for the wedding. I got through that weekend, all the while feeling really crap, the headache never let up and the nausea just got worse. I put it all down to the methotrexate and convinced myself that the following week's injection would be easier on me. With each week and injection, I felt worse until by the 7th week, I couldn't face another one and decided enough was enough. By that time, I was finding it hard to eat because of the headache and nausea and was starting to lose weight (not an issue at that time as I wasn't exactly svelte, lol!) I told my rheumatologist of my problems and that I had stopped the methotrexate but after 2-3 weeks, I still felt no better. I had lots of blood tests which showed nothing out of the ordinary and my GP wasn't really interested despite the fact I was losing weight rapidly and could barely function. Until now, even knowing that NSAIDs caused the LC to flare, I was taking paracetamol and ibuprofen although they did absolutely nothing so I'd given up on them the week before. My bowels were sort ofok at this time, the usual alternating between c & d, I guess, but it was normal for me.
4weeks ago, I couldn't take it any more, saw a neurologist who believed that the headache was separate to the nausea, arranged an MRI (normal) and said I was having migraines. They are nothing like the migraines I've experienced in the past which always felt as though my brain was trying to explode out of my skull. But she gave me some Nortryptilline along with codeine and I'm to see her again this week. The headache has improved greatly so maybe she was right. At the same time, my stomach became soooo painful, cramping, burning, freezing - sort of hard to explain, but felt so uncomfortable. I have a hiatus hernia ( since 2000 I've been taking PPI's and they've worked well) but although the hernia wasn't sliding up into my chest, my whole abdomen was hurting. My bowels had become constipated but I figured that was the codeine given to me by the neurologist for my headache. I saw a gastroenterologist and he arranged for CT scan of abdomen and pelvis (all clear apart from diverticulosis) and I had a gastroscopy last Thursday which showed only patches of inflammation which have been biopsied - now waiting for results. In the meantime, the nausea has improved due to taking Ondansetron (I think the US equivalent is Zofran). But I'm still unable to eat as it's uncomfortable to swallow and my tummy is still uncomfortable. On Saturday, I felt almost normal for the first time in nearly 4 months and then in the early hours of yesterday I was awoken with the most painful cramps I've had since my initial flare of LC, having to run to the toilet and not know which end to put over it! Sorry for the graphic picture!!!! For about 6 hours I was needing the toilet and the pain was immense. The tender tummy has continued but thankfully the explosive diarrhoea stopped after about six hours and the nausea stopped too but I didn't eat yesterday just in case.
My question is - could this all be linked? I'm sorry that it has all been such a long and boring essay but I desperately want to feel better - I'm sick and tired of feeling sick and tired and I need to get on with my life. I would really appreciate any thoughts on this because I'm rapidly running out of ideas and I'm still losing weight ( 11kg and counting - the only upside to this is that I'm wearing clothes that I haven't been able to fit into for years, lol!)
Clemmie
Long story but please help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Clemmie,
I'm sorry to hear of all your symptoms. Yes, everything is linked. Despite the fact that physicians are trained to consider every issue as a separate problem, anything that happens to one part of the body affects all the rest of it. Any problem that affects the digestive system affects every organ in the body.
In my opinion, most of your symptoms are due to the PPI that you are taking. PPIs are one of the most iatrogenic drugs ever developed. They are a primary cause of MC. And besides all the health issues that they cause (including bacterial infections, osteoporosis, kidney disease, and interfering with certain blood thinners), they cause chronic magnesium deficiency, which is responsible for many serious health problems. Your body cannot heal properly without adequate magnesium. A chronic magnesium deficiency can cause GERD (or make it worse). But the main point here is that PPIs trigger microscopic colitis reactions, so MC patients have to avoid them. In fact, they were probably the initial reason why you developed MC. I realize how difficult this is to do, but you will have to wean off the PPI before you will be able to control your symptoms. No treatment is capable of overriding them, so they have to be discontinued.
Tex
I'm sorry to hear of all your symptoms. Yes, everything is linked. Despite the fact that physicians are trained to consider every issue as a separate problem, anything that happens to one part of the body affects all the rest of it. Any problem that affects the digestive system affects every organ in the body.
In my opinion, most of your symptoms are due to the PPI that you are taking. PPIs are one of the most iatrogenic drugs ever developed. They are a primary cause of MC. And besides all the health issues that they cause (including bacterial infections, osteoporosis, kidney disease, and interfering with certain blood thinners), they cause chronic magnesium deficiency, which is responsible for many serious health problems. Your body cannot heal properly without adequate magnesium. A chronic magnesium deficiency can cause GERD (or make it worse). But the main point here is that PPIs trigger microscopic colitis reactions, so MC patients have to avoid them. In fact, they were probably the initial reason why you developed MC. I realize how difficult this is to do, but you will have to wean off the PPI before you will be able to control your symptoms. No treatment is capable of overriding them, so they have to be discontinued.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for your message Tex. I hear what you're saying about the PPI but it seems to be the only thing that keeps my hiatus hernia from sliding up into my chest. When that happens, I can't even drink water, let alone anything else. At the moment the nausea is so horrible that I'm not eating but it would be worse if I didn't take the PPI because at least I can take fluids. I'm not trying to make excuses and I'm going to have to talk to the doctor to see if it's feasible to get the hiatus hernia fixed - not something that I really want to do but if it's the only way to feel better then maybe that's all I can do.
Once again. Thanks for your message and it's good to hear that you are doing well after your stroke.
Clemmie
Once again. Thanks for your message and it's good to hear that you are doing well after your stroke.
Clemmie
In the meantime, magnesium might help to reduce the nausea, by helping your pyloric valve to relax so that it will allow proper emptying of your stomach. We get nausea when our stomach doesn't empty when it should. Antihistamines may help to prevent nausea also, but they can cause increased gas, which can be a problem for some people.
Thanks for the kind words about the stroke recovery.
Tex
Thanks for the kind words about the stroke recovery.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Clemmie
welcome - and sympathies you had to find us.
i agree with Tex's reply. early in my MC healing journey I had bad hiatus hernia, that the GI wanted to surgically repair.
via the right eating plan, some lifestyle adjustments and fixing key nutrient deficiencies i have healed it.
there are lots of options that can help.
-the low inflammation gut healing eating plan that we encourage is a good basis.
-topical magnesium - especially in the stomach area is a fantastic resource
-Vit D3 is also an essential element to lowering inflammation etc.
-basics like elevated bed head
-eat slowly, in relaxed state, sit/stand in relaxed mode for at least 40 mins after eating (do not drink or bend) ensure you eat evening meal at least 2 hours before bed time
- breathing exercises that can help strengthen muscles to stop reflux
- H2 blockers also help
healing takes time - but soo worth it
welcome - and sympathies you had to find us.
i agree with Tex's reply. early in my MC healing journey I had bad hiatus hernia, that the GI wanted to surgically repair.
via the right eating plan, some lifestyle adjustments and fixing key nutrient deficiencies i have healed it.
there are lots of options that can help.
-the low inflammation gut healing eating plan that we encourage is a good basis.
-topical magnesium - especially in the stomach area is a fantastic resource
-Vit D3 is also an essential element to lowering inflammation etc.
-basics like elevated bed head
-eat slowly, in relaxed state, sit/stand in relaxed mode for at least 40 mins after eating (do not drink or bend) ensure you eat evening meal at least 2 hours before bed time
- breathing exercises that can help strengthen muscles to stop reflux
- H2 blockers also help
healing takes time - but soo worth it
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
That's great to hear that you've dealt with your hiatus hernia, Gabes. I haven't suffered with indigestion or anything like that, it's just that mine slides up into my chest and that's very uncomfortable to say the least. Where can I find the gut healing plan? I will definitely try it as need to get this sorted. I've spent the last 4 months feeling like death warmed up and barely able to function and I can't continue like this. Also, what are the exercises? I have vitamin D3 so will start that again tomorrow. I'm finding it difficult to eat at all at the moment because of the nausea and I'm terrified of being ill again like I was early on Sunday morning so that will have to wait until I've got a bit more of an appetite.
Thank you so much.
Clemmie
Thank you so much.
Clemmie
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
link to our guidelines to recovery plan - with suggested eating plan etc
http://perskyfarms.com/phpBB2/viewforum.php?f=79
a quick google search 'breathing exercises for hiatia hernia' provides loads of results
https://www.livestrong.com/article/3109 ... al-hernia/
https://www.healingnaturallybybee.com/h ... reatments/
hope this helps
http://perskyfarms.com/phpBB2/viewforum.php?f=79
a quick google search 'breathing exercises for hiatia hernia' provides loads of results
https://www.livestrong.com/article/3109 ... al-hernia/
https://www.healingnaturallybybee.com/h ... reatments/
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
.jpg){kind=avatar}
Clemmie,
Whether or not turmeric would help you is an open question. As a general rule, when symptoms are active, the fewer supplements you take the better except for Vitamin D3 and magnesium (and only the type magnesium that your system can tolerate; not magnesium that causes d for you). Grossly simplified, healing from MC is a 2 step process and the first step is removing everything that is toxic to your system. Until that is done nothing else is going to have a significant effect on the disease although some things may temporarily ameliorate your symptoms. The second step is to eat only foods that help with healing. Many of us use the Enterolab testing to help determine what those foods are but an elimination diet can work as well. Western medicine has trained us to look for pills as cures but in fact the foundation of health is in our diets and removing all toxic non-nourishing substances, foods, medicines, supplements, from our diets is essential as is ingesting only nourishing substances. Taking Vitamin D3 and magnesium is supplying our bodies with things they need to function optimally. This is different from something like turmeric, which although it may be somewhat helpful for some people, is definitely not crucial or necessary. To heal inflammation you first need to remove inflammatory foods and "medicines" or supplements. It is amazing to me how many symptoms and diagnoses disappeared when I cleaned up my diet and stuck to simple safe foods.
Jean
Whether or not turmeric would help you is an open question. As a general rule, when symptoms are active, the fewer supplements you take the better except for Vitamin D3 and magnesium (and only the type magnesium that your system can tolerate; not magnesium that causes d for you). Grossly simplified, healing from MC is a 2 step process and the first step is removing everything that is toxic to your system. Until that is done nothing else is going to have a significant effect on the disease although some things may temporarily ameliorate your symptoms. The second step is to eat only foods that help with healing. Many of us use the Enterolab testing to help determine what those foods are but an elimination diet can work as well. Western medicine has trained us to look for pills as cures but in fact the foundation of health is in our diets and removing all toxic non-nourishing substances, foods, medicines, supplements, from our diets is essential as is ingesting only nourishing substances. Taking Vitamin D3 and magnesium is supplying our bodies with things they need to function optimally. This is different from something like turmeric, which although it may be somewhat helpful for some people, is definitely not crucial or necessary. To heal inflammation you first need to remove inflammatory foods and "medicines" or supplements. It is amazing to me how many symptoms and diagnoses disappeared when I cleaned up my diet and stuck to simple safe foods.
Jean
Thanks, Jean, I just wondered if turmeric would help at this stage but I'm happy not to be taking yet another pill! Can you tell me, how should I be weaning myself off of the PPIs? I've broken my 40mg Esomeprazole in half so taking 20mg in the morning but not sure how long I should take it for, bearing in mind I've been taking them for 17 years. I guess it should be quite slowly but I'm not really sure how long it should take. Also I'm really worried that the symptoms will come back but I'm trying to stay positive and doing the exercises that I've found online. I'm also trying to eat the anti inflammatory foods but finding it very difficult to eat anything at the moment because of the nausea. I couldn't eat chicken yesterday so ended up eating very little. I'm planning on cooking some lamb today in the hope that the smell will make me want to eat it, lol! Also planning to get some bananas. I know I need to eat because I'm feeling dizzy a lot.
Clemmie
Clemmie