It’s been a little while since I shared a health update with you and I’ve definitely been on a journey these past few months. I did two posts a couple of months ago, talking about my food intolerance’s and my leaky gut syndrome, but I’m still no clearer on why I have these issues. My leaky gut was caused by something (and it’s not yeast) and my food intolerance’s happened out of the blue just over 2 years ago. There’s been no answer as to why any of this happened or how to fix the root cause and I’ve seen specialists numerous times, a dietician, I’ve tried remedies to try and heal myself, and I have almost exhausted all resources. I just wanted to give an update on my situation as I know a lot of you ask how I am doing, so I’ve broken it down into parts and a background of what happened, just in case any of you out there are doctors or might have the same experiences, any advice or ideas would be most welcome, please!
What happened? In May 2015, I had an acute attack of something that made me have mild sickness and diarrhea, I couldn’t keep any food down or in, and water was a struggle as well. This happened for about a day or two, and I had really bad stomach pain. After this, my small intestine and stomach area between my ribs swelled up huge like I had swallowed a tennis ball, and was burning like lava all the time. Sometimes I was doubled up in pain because I couldn’t stand straight.
After a couple of weeks of that, I went to the doctors and she said I has gastritis and put me on Omeprazole (a proton pump inhibitor which lessens stomach acid). These tablets were really bad and gave me migraines and weight gain, so I came off of those and went onto Ranitidine, but they weren’t strong enough, so I then swapped to Lansoprazole. For a while this was working, but food intolerance’s were getting really bad and most foods were causing issues. I was then put on Domperidone, to push the food through faster and stop acid sitting in my stomach, but those made me gain weight even more and they actually caused me to not be able to retain any foods. The food would fly through and it was awful. I stopped taking those and was still on Lansoprazole, but the pain in my stomach would not go away. The only way to describe it was like someone had punched me between the ribs on top of when you’re starving hungry, so you get that deep, pitted, gnawing ache. If anyone knows what that means?
I was treated for H.Pylori last year, but that didn’t work. The antibiotics did stop the stomach pain for the duration of being on them, but the side effects were absolutely awful. I came off of my Lansoprazole tablets about 4 weeks ago as I found out they had corn in them and wondered if the corn might be causing the pain, but so far the pain is still there. I just can’t figure it out. It’s getting me down a lot of the time and my stomach is often the size of a 6 month pregnancy. All of it swells up so huge, and it’s full of gas and inflammation to the point that I can’t sit or walk properly. It’s so uncomfortable. So this is what’s happened to me over the last couple of years, but below I’m going to comment on what I’ve been told and have tried.
Gastroenterologist – I paid to see a private gastroenterologist and I had a 45 minute consultation. I found out I have gained about 12-14 pounds during this time, for no reason (I’ve actually been eating less). He couldn’t find anything physically wrong, or feel anything, but he did say a few interesting things. He said I wasn’t really a candidate for getting a stomach ulcer, the treatment rules out H.Pylori, and I’ve also had the blood test to show I wasn’t Celiac. He did say a lot of my symptoms are very much like IBS (which I know) and that we need to rule out anything that could be mimicking that (like SIBO – Small Intestinal Bacteria Overgrowth) and he also said that my Ehlers Danlos can have large effects on my nerve endings and my digestive system, which means mine is hyper sensitive and stretchy.
SIBO Test – I went through and had the SIBO test last week at the hospital and it meant I had to starve for about 16 hours in total. It was incredibly uncomfortable as the longer I go without food, the more the pain in my stomach worsens. I then had to drink a glucose substance and breathe into a breath monitor every 20 minutes, 5 times in total. This test came back negative (even though I was certain it would be positive) and it’s put me at even more of a loss. I’ve read that there are numerous substances the bacteria can react to and glucose isn’t always effective, plus it can take hours to go through your small intestine, so it might not have been accurate. I’m still debating right now whether or not I should try the treatment for it, just in case the test was wrong, since it would make so much sense for me to have it, but I don’t know.
Dietician – I met up with a dietician in July and I wasn’t too impressed with that. It was via the NHS and I don’t feel like I was taken seriously at all. She said the weight gain is because I’m older and not very active… When I know it’s not. I’m eating the same foods and as active as I was before (unless I am in pain) and I’ve aged about 2 years. That to me was ridiculous. The letter she sent back to my GP was also completely wrong as she only listed about 5 foods on there that I can eat. She also said that I need to try and eat the foods that cause me problems to see… but I already know they hurt. The only thing she did say that I did think could be possible, was the fact that sometimes having something like Gastritis could have damaged all my digestive enzymes, so I no longer have the ones that break down my food groups. This did make sense to me, but I wasn’t really given anything more on that or how to fix that issue. That was just left hanging in the dark. What are anyone’s thoughts on that?
Supplements – For my Leaky Gut and my overall digestive health, I’ve been taking a mixture of L Glutamine to help with the healing, and digestive enzymes. At first, I wasn’t sure if this was going to help, but I do think the L Glutamine is doing something to help my gut, but the digestive enzyme is the best. If I take 1-2 tablets of those after my meal, it is a lot easier for me to digest and cope with, however I do tend to get constipated sometimes when taking them, and I’m not sure why. I’m no longer on medication so the only things I am taking are these two. I’ve tried Slippery Elm and didn’t get on too well with it.
Symprove – I had to come off my Symprove for about 10 days before my SIBO test as it could have interacted with the results as it’s live bacteria. The time off of Symprove proved very difficult though. I was having more and more stomach upset and frequent bathroom trips, which I knew was because my body wasn’t enjoying not having its friendly bacteria daily. The day after my test, I was literally overjoyed to be taking it and despite the vile taste that I can never grow to like, I am so happy to be back on it. It genuinely helps with my cramps and the feeling of my gut lower down, but not my stomach issues since that’s separate. I wasn’t sure at first if Symprove would really work as it took so long to get into my system (3 months), but now I know it does and I don’t want to be without it.
Spontaneous Food Intolerance’s – So when I was speaking about my food intolerance’s before, Wheat, Egg, Yeast, Mushrooms, Onion, Cabbage, and Milk seem to be the main ones for me. They cause me gas, bloating, bathroom trips, and nausea, however one thing I have noticed is that it’s not with all the same food. Sometimes I am able to manage fresh baked bread with no problems. Sometimes I can handle something else I shouldn’t eat, and then other days, all hell breaks loose and it’s absolutely awful just from consuming a small bit. Or, what’s even more confusing, I might not have eaten anything at all that’s a trigger and my stomach has swollen up to look pregnant again… There’s no consistency and I don’t understand what’s going on here. What’s even worse is if I consume gluten, my nerves burn on my arms and I get cystitis pain, however that gnawing ache in my stomach vanishes and I don’t have the pain there, instead I have external nerve pain. Why?
Final Thoughts – I am waiting to see a consultant about my Ehlers Danlos and see if that could be related to Small Fiber Neuropathy which is causing nerve pain all over, including my digestive system. But that’s it, I have no idea where to go from here. I’ve come so far, but I have gotten nowhere. It’s really difficult for me to even begin to explain how hard it is on me mentally now. I can almost never go out to eat, if I do, I can’t eat and just sit there with others who are eating and endure the questions and odd looks. There’s only one restaurant I can go to safely. The fact that my stomach is so unpredictable and painful most of the time causes me to get stressed out more, but stress isn’t the root cause of this. I don’t think I can go through the rest of my life living off of potatoes, fish, chicken, and restricted vegetables and fruits. I don’t enjoy any of the food I am eating and it’s still making me gain weight. It’s also getting hard for outfit shoots when I’m so swollen as well. I can’t really travel anywhere without suffering either, so it’s impacting my life hugely. So please, if any of you know something you could suggest for me or know of any possible causes, I am literally all ears right now. Thank you!
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So very sorry to hear you are going through this. I hope someone has some valuable information that could help you 🙂 x
Author
Thank you 🙂 I hope so too!
Hi Lorna
I’m really sorry you’re going through all this horrible health stuff. I wanted to ask if you’ve had an ultrasound or MRI of your midsection? Just to rule out any underlying causes.
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Hi Moz,
I haven’t. I did ask for that, but apparently an MRI won’t show up anything. I’ve had one on my pelvis area and I asked for it to be extended to my digestive system just to check, but they didn’t want to do that. I’ve had ultrasounds on my ovaries, womb, and urinary areas, but not on my digestive system either. What are your thoughts?
Yes, they are correct in saying such tests won’t show anything – you’d need an invasive one to have a look at the stomach :-/.
Things such as cysts and endometriosis have similar symptoms to IBS and can be overlooked (ultrasound and MRI can pick up on it sometimes, but a laparoscopy is mostly used for diagnosis of endo – which is invasive). Has the nhs referred you to a consultant of any kind? I think that might be helpful to rule out further things via blood tests.
Also, have your vitamin D levels been monitored since you found out it was low?
Author
Thank you, I emailed you the answers!
No form of neuropathy is any fun. (I have a fairly pronounced case of the peripheral variety.,) Gabapentin helps me with the nerve pain. The only supplement I’ve tried is alpha-lipoic acid, which produces marginal results. (I am told this is an approved treatment in Germany.) I have to figure they’ll solve this puzzle soon, as unnecessary pieces are swept off the table.
Author
Sorry to hear you are suffering too, Charles. I hope they manage to figure things out for you!
I don’t have any advice or suggestions for you but I hope that someone will be able to point you in the right direction as a result of reading this entry.
I’m really sorry to hear how horrendous the situation has become for you. 🙁 Take care, Lorna. I hope you are able to turn a corner on this before much longer. 🙂
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Thank you, Steven. I genuinely hope so!
Oh no I’m so sorry that you have been having all of these problems! I think I developed an onion intolerance earlier this year and now I’m really sensitive to even tiny amounts of onion powder which isn’t great. I hope you find the root of your problems soon :/ xx
Author
Onions are awful. Sorry to hear you have intolerance’s too!
this intolerance is very horrible my dear
i hope that you heal soon <3
NEW OUTFIT on my blog <<< sundress fashion trend >>>
have an happy day
kisses
Author
Thank you!
I can’t remember if I ever suggested this before so I’ll say it for the record: The underlying cause of this repertoire of illnesses may be an environmental nemesis. Perhaps there is something in the water or air in the place where you live which is sickening you. I know that people used to go Bath for their health but it may be having the contrary effect on you. That prompts a rack of questions:
Have you ever lived elsewhere for more than a few weeks? If so, did it make a difference?
Have you tried drinking filtered, purified water?
Is there any industrial plant in the district that might be producing an atmospheric toxin? E.g. a tannery, brewery, chemical plant or industrial incinerator.
Have you tried tracking the episodes of illness over time? Laying out a multi-year chart and marking the occurrences might show a significant pattern and correlation to something.
Have you ever had intestinal parasites such as hookworm, threadworm or cryptosporidium?
Is there a cluster of these conditions in the district? It may be that there are dozens of people within a few kilometres of you who are also going through this. Perhaps there is NHS data on occurrence of ME and associated conditions. If you contact universities that conduct epidemiological studies, there may be research already published on this.
You may have been over some or all of this ground but I offer it on the offchance that something might ring a bell.
Author
Hi Travis,
There could well be something in the air here. I live in the countryside and there’s a lot of crops, so perhaps it could be something to do with that? I only drink filtered water, it’s from our taps, but I filter it as the water here tastes like chlorine.
I’ve never lived anywhere but here in Bath. I’ve been on holiday destinations, but never for more than 6 days, so I couldn’t say. It’s not enough time to know, and when I am away, I still get the same issues.
I don’t live anywhere near a chemical plant or any factories actually that product smoke or anything. Being in the country means I’m well away from all of that.
I did have worms when I was very young, perhaps I was 6 or 7? But that cleared up with the medication within a couple days. Think it was threadworm that I had. What’s your thoughts on that?
I’ve not heard of anyone around here being sick, everyone seems quite sprite, however my mum does have a lot of digestive issues. I’m not sure if the South West in general has a higher degree of illness though? I wouldn’t even know where to look for that. I’m looking forward to your replies though!
If you haven’t had any episode of intestinal parasites since years before this started, I think it’s not related.
The only way I can suggest to find epidemiological data is just searching online using the phrase ‘epidemiological study’ followed by the condition. I’d also try calling universities with medical schools and simply asking their librarians for guidance on how to search for it.
Regarding water; in Australia, supermarkets usually stock distilled water for human consumption which is (purportedly) pure H2O with no microbes or any chemicals. It’s usually described as ‘purified’ and has a description on the package giving the details. Perhaps it’s available there. If it is, it’s worth trying; I don’t see how it can harm you. I once saw a list of all the chemicals added to the water supply here. It had about forty polysyllabic names. I don’t know if you can find out what’s in your tap water; you’ll probably receive an interesting surprise if you do.
Something else occurred to me:
Although it would probably be a by-product of the bloating and not a causal factor, that ‘swallowed a tennis ball’ symptom sounds a lot like sliding hiatal hernia. There’s plenty of material about that on the Internet. The location of the pain you described is very typical of the condition.
Author
Thank you! I will look into the purified water as I’m guessing ours here is probably full of chemicals. I know it’s full of chlorine as it tastes like that, quite strongly, so I will see. Is spring water the same? How do I make sure it’s fresh?
Regarding the hiatal hernia, I hadn’t thought or looked into that. It could be. I know I get that ball shape in the mornings, sometimes at night. It’s no specifically round like someone vacuumed my skin over a tennis ball, I should say it protrudes out in the upper intestine area, just below my actual stomach. It sticks out in a rounded shape, creating almost like a two tyre stomach look from the side, like a rounded E shape, is that makes sense. It’s really odd. I’m going to look it up! Thank you!
Edit – I did just look that up, it sounded almost right, but it seems like it’s too high up. Mine is below my stomach, into my upper intestine, similar to the duodenum area?
Oh gosh, Lorna. I am so sorry to hear you are going through this. My mom is currently going through similar stomach issues and it is incredibly frustrating to see her continue to get no answers for her symptoms as well. I can’t imagine what you are going through. Unfortunately for my mom, she has gotten some relief from remaining on an incredibly strict (and horribly boring) diet. I really hope the doctors are able to get to the root of your health issues soon!
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Thank you, Lindsey! I hope so too. Sorry your mum is going through something similar as well. It’s no fun.
I wish I could help you but I have no idea. I am dealing with bloating (look like I’m 3 months pregnant) and have cramping right now but I believe it’s something to do with my IUD and ovarian cysts. Going to get an ultrasound on Friday. I have had some heartburn and I’ve heard that some get diarrhea. Have you gone to a gynecologist and got an ultrasound? Who knows but it’s worth looking into. Sorry to share too much info but I know you are looking for anything at this point. Praying for you my friend.
http://www.kathrineeldridge.com
Author
I’ve had a lot of ultrasounds etc and I actually have one ovary larger than the other, with cysts, so borderline poly cystic. It’s not the same kind of cramps though as the pain in my stomach is the digestive area, not the same as the womb. I’m so sorry you’re going through something awful too, I hope you can get it sorted!
Hi Lorna ,not a good place to be in all I can offer is a couple of suggestions that may help ,but more long term . Have you try yoga to help build up your core and inner well being and raki my be able to find an answer if you have a practitioner near by you . take care and stay strong and positive Ian
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I have definitely been working on mindfulness, but no yoga at the moment. It’s something I am looking into doing, but when I am doubled up in pain, it’s not always possible unfortunately to do stretches.
Hi Lorna is mindfulness a type of self healing ? I try to focus my own mind on the area that is causing the problem . For your self seeing the leaking gut slowly closing up and the lump you feel in the lower intestine dissolving away . Sorry not very good at describing this . For myself a feel warm in the area I am concentrating on , the best time I find is in bed just before falling to sleep ,so the rest and positive thoughts do their thing . take care Ian
Author
Hi Ian,
I have tried things like that, but honestly really struggle with it. I am always trying to keep a positive mindset about most things as well and distract myself etc, but none of it seems to improve the symptoms. It’s a lot related to when I wake up in the morning, so I have no idea what’s happening to my body at night. I’m not negative or stressed when I’m asleep, so it’s puzzling.
Oh, Lorna…. reading what you wrote, like “having a punch on the ribs when feeling like starving” must be a horrible pain and double up to walk, because you couldn’t stand, that is also bad. I know what you mean by not being taken seriously by NHS, saying that you are not exercising and are older, what’s that? The pictures of bloated belly are also impressive. I relate to some food intolerance, some of the items you mentioned, but I still eat some. And then yes, of course pain, bloating, etc. But not to the same extent, like you, I suppose. I don’t know what to say, or advice, only that when I don’t eat those things I am OK. I have some pain sometimes, but as i told you, my decision to eat some things and people tell me “you know you’ll have pain, are you Ok with that?” But as I said, not like you, from what you described. I hope you get things sorted, and that you don’t have pain anymore!
DenisesPlanet.com
Author
Hi Denise, thank you so much for your comment. I really appreciate it. Sorry to hear you have food intolerance’s as well though.
Lorna,
I’m so sad that you’re going through this, I send all of my best wishes to you and really hope you get better. Cheer girl!! You’ll get to the bottom of this and get better.
Author
Thank you so much!
Lorna I had no idea you were suffering so much, I am so very sorry!!! I wish I had any knowledge of any of this so I could be helpful. I can’t imagine what it’s like dealing with pain, discomfort and bloating on a daily basis. I know I’ve suggested this before but what about trying a veg diet? I know my ex had a lot of stomach issues and when he adopted a veg diet they all went away. In any case you are in my thoughts and prayers, and I fervently hope you’ll get to the bottom of this and that it will one day soon be just a bad memory.
Author
Hi Sandra,
Thank you for leaving a comment. Veg is something I struggle with a lot too. I’m so restricted with it. I can’t eat cabbage or dark greens as they cause me the same issues. Can’t eat mushrooms, peppers, tomatoes (I know they’re technically a fruit) but pretty much the only veg I can eat is peas, carrots, runner beans. That’s the only 3 I am eating. I also can’t eat soy or many other protein substitutes, no dairy etc, so I’m pretty stuck to just the same foods over and over again. Grains are extremely hard for me as well.
All of that sounds just massively dreadful, I am so very sorry! If I hear of anything over here on this side of the pond that might potentially be helpful, I will of course let you know. In the meanwhile I’ll be sending all my best wishes your way that this gets resolved asap and you can resume a normal life.
Author
Thank you, Sandra! I really appreciate that!
Lorna, I am so sorry to hear you are going through this and with very little help, understanding or direction! I know first hand what it’s like not to be listened too and I pretty much have given up ever going to my GP or anything to do with the NHS, as they are always very disbelieving and never seem to listen to the patient who actually knows their body better then anyone. In the last year I have also come to suffer with extreme bloating, like you say, the pregnant look and also get pain just below my ribs if I don’t eat but this isn’t all the time. I’d say it’s consistent in the way it’s inconsistent, if that makes sense.
The only things that spring to mind and I don’t know if they will be of any help but maybe worth looking in to. My mum went to see someone called Dr. Kadirkamanathan who is based in Essex but helped her when she was almost at a point of giving up, diognsoing her through a series of tests that are very up to date and effective. Her illness is different to yours but his specialties might cover what you have been suffering with. Also I may have mentioned it before but check out the Medical Medium website, I’m not completely sure on the services that they can provide for people in the uk but again worth looking into possibly.
Sending you lots of love and healing,
Daniella xox
Author
Hi Daniella,
Thank you for commenting! Sorry to hear yours is acting up too and that your mum has issues as well. It’s no fun! Can I ask what your mum was diagnosed with? I hadn’t heard of that doctor but I will definitely look them up. I’ve not heard of Medical Medium, which I did just look up, but I’m not sure how I’d feel about someone guessing or using intuition as I feel it’s such a complex thing going on in my stomach right now. I think I’d rather have physical tests as I know 100% they’re doing something. But I will look up that Dr now! Thank you!
Oh Lorna I’m so sorry you’re going through all this – and that you’re getting no support! You didn’t mention it in your post so I’m not sure if you’ve tried it, but have you looked at probiotics to help your gut? I know they help with IBS symptoms like pain and bloating so I thought I’d suggest it.
First thing you have to do is find a new dietician – seek out more opinions from the medical professionals and don’t accept feeling like you’re being fobbed off. I had a few issues a few years ago and I was getting so frustrated as it was such long waits to see everyone and then no-one could help. After finally getting in to see a specialist at some place way out of my way I was told to just ‘keep doing what I was doing’ for another 6 months before they could see me again. I just walked out their office and cried. It was my mum mentioning my struggles to her friend who gave me the name of a doctor they recommended – who could see me in 2 weeks, was absolutely wonderful, understanding, and had some things to try. It’s horrible when you can’t get answers but maybe you just haven’t found the right doctor yet who will go above and beyond to help you – I hope you find them soon!
Away From The Blue Blog
Author
Hi Mica,
Oh that’s what Symprove is. It’s a pro-biotic which has billions of bacteria in it and I take it each day. It definitely helps somewhat, but doesn’t fix me obviously as I don’t know what’s wrong.
Sorry to hear you had a similar experience with doctors. I don’t really understand why they are like it. I get they are so busy and see patient after patient all the time, but you can’t just fob people off and dismiss things and not take their problems seriously. It’s extremely unfair and makes us suffer even more.
Look up FODMAP
Author
I’ve tried the FODMAP diet for quite a while as well, but it didn’t help unfortunately.
I am a certified nutritionist however I have not practiced in years. I do recognize a lot of your symptoms. I suggest you seek out a nutritionist, their whole purpose of practice is to get your body back in balance. This is their speciality. What’s even better is that all of their protocols are bases on natural remedies. They work on your body so it can heal itself and not by masking your symptoms. I promise you I have seen symptoms like yours in my nutritional community and know that it can be healed. If you are interested I can send you some referrals to some great nutritionist I trust. Check out their website and if you feel like they might be able to help contact them. I also offer you my knowledge. If you have any questions, I would be glad to help.
Author
Hi Neda,
Thank you for commenting and letting me know. I know you’re not practicing anymore, but would you happen to know at all (as a rough guess) what you think it might be? How would a nutritionist help? Is that by adjusting my diet or something else? I live in Bath, UK, so if you do know of any you trust and could point me in the right direction, that would be hugely helpful!
Thank you!
Hi Lorna,
Sorry for the late reply. You have leaky gut for sure, there are many things that could have caused that. The important thing is to heal it. When you have leaky gut the walls of your digestive tract are permeable and foreign particles like undigested food can enter the blood stream. In such cases, the body will treat it like a foreign object and react defensively. This will create numerous symptoms, such as inflammation, pain, swelling etc… The body will start attacking itself. The root of your healing is to heal your digestive tract, which will allow your body to heal its walls and ultimately lower its defenses and your symptoms should subside. Now how to do that exactly differs from person to person. There is no one cures all approach. This is where a nutritionist comes in, through one on one analysis and tests you will work together to find the best treatment for you individually. I have seen it many times. Depending on the damage it can take much time but healing will occur. I live in Canada, unfortunately. You can look for registered HOLISTIC nutritionist where you live, make sure they are registered with the International Organization of Nutritional Consultants (IONC). I know a peer of mine Mr. Gitalis does treatments via skype you may want to check out his website http://www.joshgitalis.com/. I hope this helps, I will wish you a fast and speedy recovery. Sending you lots of love.
Neda
Author
Hi Neda,
I couldn’t actually find anyone in my area who specialised in this, it took me absolutely ages, weeks, to be able to dig deep and find someone out who practices here once a week. I have her details, hopefully will be able to see her soon. I do definitely feel there’s something more outside of just the leaky gut going on though, I keep waking up with a tennis ball lump in my small intestine. It literally looks like I swallowed a tennis ball. It’s really hard, and I have no idea why.
Sounds like your body is dealing with a lot, I hope the person you found will be able to help. It is hard to diagnose and help without a proper assessment. I just don’t want you to give up. You can fight this, just don’t give up and educate yourself as much as you can on natural and holistic approaches. I believe in you. Stay Strong. I know the hardest part is the mental despair and fatigue, I have been down that road myself. Stay positive know you are NOT alone, and that as long as you don’t give up there will be help. Sorry I could not help, I am hopeful that someone on here will. 🙂
XO
Author
Thank you so much, Neda 🙂 I really appreciate your kind words. It means so much to me.
OH my Lorna!! So very sorry to hear you are going through this. I wish I know a doctor or patient who has the same problem as yours so I can help. I’ll keep you in prayers girl! Take care and have FAITH!!
Love yah!
Much love, Len
http://www.lenparent.com
XO
Author
Thank you so much, Len! I really hope so xx.
Hi Lorna. I came across your blog about six months ago as we shared the same love for citizens sculpt jeans. I have also suffered s since my early 20s and have done lots of care since with great success pls Message me at @thetarataylor so I can give you some pointers on how I have recovered successfully with certain life changes (the doctors are still in awe on how I did it). My thoughts are with you and you will overcome. Kindly, Tara
Author
Hi Tara,
Thank you so much for leaving this comment. I will email you soon!
Lorna I’m so sorry that you’ve been dealing with these horrible health issues. It must be hard having severe stomach pain of the kind you described, and having such limited foods you can eat. It’s a shame that there are no clear answers for why this is the case, and that you found the dietician you saw on the NHS to be dismissive. This seems to be the case all too often, sadly. I wish I had more knowledge of this subject to make a definite recommendation. I just hope that the other responses you’ve gotten have given you some helpful leads to follow up. Hopefully some of the other suggestions will lead to something promising. I wish and hope that you’re able to get the right treatment, so you feel much better and don’t have to suffer with these awful problems. Sending lots of positive wishes your way.
Lots of love Saba xx
http://www.trulymadlydeeplyfashion.blogspot.com
Author
Hi Saba,
Thank you always for the love and support that you give me. I did get your email, and will reply as soon as I get chance. I hope you’re well xx.
You’re so welcome Lorna! I hope things get better for you. Thanks so much for your recent message. I’ll reply to you shortly! Have a fab day. xx
Author
Of course!
Hi Lorna, Have you heard of FMT? My friend had very similar symptoms. She did FMT (her husband was the donor), and now she feels 99% better! http://thefecaltransplantfoundation.org/what-is-fecal-transplant/
Author
Hi Tatiana,
Yes, that’s something I have looked into and considered too! It’s not widely practiced anywhere near me though and the costs are in the thousands, which unfortunately isn’t something I can afford at the moment unfortunately 🙁 The idea of it doesn’t even gross me out either, it sounds like it would be amazing if that worked 🙂
Hi Lorna, So, my friend didn’t go to the hospital for that and didn’t pay that much. She consulted her doctor over the phone, and did it at home for free 🙂
Author
Oh I didn’t know it could be done at home, I don’t think it can here in the UK as it’s not widely practiced 🙁
I’m going to start a new comment thread because the other is being crammed too close to the margin.
The water: Spring water is usually synonymous with mineral water and is not what I meant. Purified water is distilled and treated by reverse osmosis to remove chlorine, fluoride and other chemicals. There is argument about its value, healthwise, but if a contaminant in your water is causing trouble, drinking purified water may provide a control to measure against. It’s usually expensive; here it runs to about a dollar a litre.
The hiatus hernia: I think it’s worth investigation; the apparent location of the swelling doesn’t necessarily exclude it. It’s not called ‘sliding’ for no reason.
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Thank you, Travis! I will definitely look and see if I can find that water 🙂
I did receive a message from my gastroenterologist today. He’s looked over my results that the test doctor said were negative, and it does show that I product methane. Which indicates I have other types of bacteria present where they shouldn’t be, and he’s suggested a course of anti-biotics to treat that and go from there. I did wonder how on earth my test could have been negative when all I had was gas! So maybe I might be on the right track to see how that goes. If no improvement after that, I will ask about the sliding hiatal hernia and see what they say!
Thank you!
Wow, that’s heavy Lorna. I wish I could give you any advice. All I can do is wish you the best and I hope you get better soon.
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Thank you!
I’m afraid I don’t know much about stomach complaints but sadly rather a lot about peripheral neuropathic pain. A couple of things that might help came to mind. 1) you mentioned constipation. I really struggled with senekot, dulcolax etc as they gave me real stomach pain. Following reviews on Amazon I tried oxygen based colon cleanser. Silly price at about £40 for 180 capsules but they lasted for ages and really helped. I take 2 before bed if I need or 1 as maintenance. I don’t get stomach cramps and sorts everything out. Also constipation, mixed in with peripheral nerve can exacerbate the cystitis pain so it helps with that. 2) perhaps look at what pain relief is available. Outside of the specialist fields there are pain management teams who are good at looking at the pain side and how you manage/ live with it. Separately there is something called a quell device. I had to get a friend to get me one from America. I was sceptical but the reviews were good and it has made a difference to me, especially in a pain cycle. Won’t help the underlying problem but can make manageable. 3) you mention burning pain in the arms. Do watch this particularly with typing – burning pain is symptomatic of CRPS. Try and avoid this and rest arms if you get it. Overuse/ typing caused mine. I also think with chronic pain the body gets itself in a mess and doesn’t know what it’s doing so can throw out all sorts of confused messages.
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Hi Cath!
Thank you for replying and leaving me that helpful comment. I really appreciate that! I just looked up the Quell device briefly, and that does sound really good. I’m going to look into that properly! Thankfully the constipation is only about 25% of the time, it’s the other way the majority, so I don’t find that I need to take any laxatives thankfully! I did used to have to a few years back, but not so much anymore. Thank you!
Oh hun, I’m so sorry to hear all this. I really hope you can get things sorted out. I don’t have any advice myself, but it looks like everyone else has some great tips xx
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Thank you! I do seem to be making some progress at the moment!
Lorna,
I’ve been through a number of gastrointestinal issues and hopefully my experience is helpful. Some thoughts:
The bloating you experience could be from bio mechanics being out of kilter. I’ve required emergency hospitalization a couple of times driven by acute pain and bloating. One occurrence was driven by a parasophogeal hiatal hernia (usually diagnosed with an upper GI series or CT scan with contrast along with a follow-up examination via an upper endoscopy). The other occurrence was a blockage in the small intestine from an adhesion (also identified by CT scan). In both cases, an initial treatment was to pump my stomach which provided almost immediate relief from the pain and bloating. Ultimately the hiatal hernia required surgical repair at a later date. The adhesion was addressed by flushing my system followed by two weeks of strict adherence to a liquid/soft diet.
With respect to your leaky gut, have you tried fermented tea (aka. Kamboucha)? It’s loaded with live probiotics and tastes pretty good.
Pain is quite often a symptom of inflammation. Have you tried any of the major anti-inflammatory (either steroidal or non-steroidal) offerings.
Again, these are just my ideas and past experience. You should of course review them with your physician before acting on any of them.
Tim
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Hi Tim,
Sorry you’ve been through all that. That’s no fun. My doctor has suggested an endoscopy, but I really don’t want to have one.
I’m taking Symprove which is loaded with probiotics, which I’m happy taking at the moment 🙂 I can’t take the anti-inflammatory meds though as they irritate my stomach lining and can lead to ulcers. So I don’t take any of those.
I’ve got a lot of thinking to do with regards to the endoscopy and how I proceed from here I think 🙂