Any help/advice welcome.Desperate. : Hi. First... - IBS Network

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Any help/advice welcome.Desperate.

Lawli profile image
10 Replies

Hi. First time here, but desperate at this point. Was diagnosed with GERD 5 years ago. Symptoms started when pregnant with my second child. Nexium daily helps the reflux. I have had (what I assume to be) ibs flare ups for about 8 years now. But they we milder and I don't remember them being this severe. I also had NO idea that it was possibly IBS, because I didn't correlate the anxiety to the stomach issues. It seems to flare up every couple of years or during high stress times(like pregnancy, isolation, or just overwhelming stress of being a basically single mom-hubs is military, so gone most of the time.)For almost 2 months now, I have been having severe trapped gas issues. Like severe to the point I cannot drive and have been advised by my doctor,GI, and psychiatrist not to. And with 2 school aged children.... This is no good. Feels like it's in upper intestines, because I can feel it in my chest. Causing pressure on my lungs. Making it tougher to breathe. In turn... Causing panic attacks and constant anxiety. Tbh... I get anxiety just from eating at this point.. I'm scared to eat, but if I do not eat when my body says it's hungry, I go into even worse anxiety lol. It's as if I can feel my digestive system work after each meal i eat. Sometimes tolerable, sometimes the gas and bloating and pressure get to me much more and sends me into panic, even on xanax. There are times when I do feel my lower digestive tract working as well, but these don't seem to bother me as badly anxiety wise, they just are uncomfortable and annoying and prevent sleep at night because of cramping, sometimes back pain, and being hyper aware of the churning my stomach does. I do vomit occasionally, but not often. I try hard not to becasue I want my medications in and not out. I have been adhering to the FODMAP diet, assuming it's IBS for about 2 weeks now. I have noticed a difference, but if I stray in the slightest bit, I pay the price. Even adhering to it sometimes I pay. I've been eating small meals constany throughout the day and one day a food will be perfectly ok to eat, but the next day, the exact same food sends me into hours of discomfort as I digest it. I understand it's a process, and that not all FODMAP items may work for me, I.E. lettuce, potatoes, and eggs I have eliminated so far from the edibles list. Since I have gone FODMAP friendly, I have had diarrhea for a little over a week. Daily. It was yellow/Clay colored for about a week, and has finally started to darken. I don't always have it though. Sometimes I feel a contispation feeling, even if I've already had a movement that day. Honestly feels as if gas wants to escape, but it is unable so it builds up, if that makes any sense. I have been to a GI and been prescribed some medicines for IBS sufferers. I have taken none of them, as I'm not exactly sure what they do. They are as follows: cyclobenzaprine and dicyclomine. I was not informed what they do when given. So I've been nervous to try them. I have no real pain...majority of the time. And I believe the dicyclomine is for pain and has side effects can be bloating, gas, and anxiety. Which let me tell you.... I do NOT need any more of ANY of those.. Lol. I think the cyclobenzaprine is a muscle relaxer. Which I don't want to take, as I'm already on xanax for the panic disorder. I'm afraid that may be too much of a great thing lol. I have gone and done a SIBO test, it came back negative. I go for a CT scan in 2 days, but I have a feeling it's going to come back normal as well. So I'm trying to pre prepare for an IBS diagnosis. Do any of these symptoms sounds like IBS? I thought for sure that the SIBO test would come back positive, because all the symtpoms were there... Especially the excessive gas. I take beano before everything I eat, and gas x occasionally when it seems to get SUPER bad. Not so much flatulence, but trapped gas and lots of burping. Sometimes large, sometimes small. I've noticed that changing positions a lot and yoga help relieve it sometimes. Even simply laying down for a while, then getting up allows me to let out a huge burp making me feel momentarily better... It seems to come in waves. And sometimes these on and off waves last for hooours. I assume like the digestive tract would be working. I've been doing some research on IBS, and many things add up, but was wondering if any of this sounds familiar to anyone else. Covid has made this journey so much harder, because appointments are so spaced out to keep social distancing, that it's taking forever to get the tests and make any progress with a diagnosis. Sorry so long, but wanted to be thorough and as descriptive as possible for other sufferers to possibly relate to, and be like "YES I know that feeling". I appreciate the forum and any advice/ constructive criticism that anyone can offer. Maybe tips or tricks that I don't know of yet. I'm still learning and researching, so I'm sure there's much I don't know. Thank you all, and keep strong!

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Lawli
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10 Replies
Maureen1958 profile image
Maureen1958

Hi Lawli, I recognise a lot of what you are saying. I have had IBS for 35 years. It started out as diarrhoea and has got more constipated over the years, especially as I have got older. I have noticed since the constipation kicked in that I have more problems up the top end, like you are describing! I guess yours could be working the opposite way to me, ie your indigestion symptoms are causing IBS symptoms!

It's interesting that you say you can feel your digestive system working up top and now starting to feel what's going on down below. I have had the reverse to this ie now recognising what is happening up the top and how this relates to down below. So I know exactly where you are coming from. So yes, it does sound very much like IBS to me.

I also found it interesting that you say your symptoms up top worry you more than your symptoms down below. Mine is the other way around, ie my systems down below worry me more! I'm guessing that is because that is where our original symptoms started and what worry us the most!!

So, I guess what I am saying is, that it is probably IBS caused by the indigestion problems up top. Also, it may be, the Nexium may be adding to your problem or even causing the constipation!

Lawli profile image
Lawli in reply toMaureen1958

Thank you so much for the response Maureen. Yes, I've been on the nexium daily for 5 years. My youngest child's gift for me.....thanks a lot.... lol!! Actually just recently when in to do my sibo test, and I didn't take it that morning to get an accurate reading. When I got home, I was so hungry that I just got home and ate, completely forgetting to take the nexium and wait to eat. Oh, I paid. Heartburn was visiting me within an hour of eating. I cannot tell you which came first though....i believe they both came around the same time. The trapped/excessive gas...... although then, I honestly don't think I knew it all tied together. I also didn't know that the chest pressure, panic, stomach issues, and heartburn all tied together. I drastically changed my diet to what would closely resemble a FODMAP diet, but I did do Gluten. It was a very low fat, lowerish carb, and low sugar. And lost weight while pregnant, while baby boy blew me up like a whale lol!!! I actually lost weight each time I went for an appt. But I started to feel better. It happened much less often until it faded from what I'd call a flare up, to more of an occurance. Like if I ate fried chicken, I would pay a price. I also started to notice that bread was an issue after delivery, so I did my best to not eat it. And just, as the years have gone on, found what works and doesn't. The learning process is just such a drag lol. But I do find it very interesting that we have the same symptoms.... On opposite ends lol. you have more years of experience with it, as I'm still only the age of your IBS. And only 5 of those would I count as actually dealing with some IBS symptoms. Now, I say I've had symptoms for about 8 years, and that it true, but my first flare up, I had NO idea. I mean no clue that it stemmed from digestion. I had panic attacks, from what I thought, was out of the blue, then would be tied to the toilet seat an hour later with diarrhea. I ended up in therapy, on panic meds, and having very depressive thoughts, I. E. Like not waking up the next day, a general hopelessness, and no motivation to do anything. Never put it together until after birthing my son, where it happened yet again, and I started connecting all the dots. This is when I had my 3rd big flare up. I lost even more weight. I believe I mathed it out as 27-30 kg (60-70 LBS) in about 9 or 10 months. This flare up happened when my son was between 1 and 2. My hubs was out to sea, with only contant being delayed email. It was a very rough time for me, and I'm sure depression played a big role in the weight loss. I barely ate because I was scared to eat. I'd never know what would upset me. Like I've said, one food is safe one day, and not another, prepared exactly the same. Maybe it was that I'd find something safe and overdo that one thing becasue I knew it to be safe and needed relief. I'm not sure. But again, I was home alone for months at a time with 2 kids, my youngest was/is such a handful that I recieve pity looks constantly from people while out, or that know me, esp my psychologist who often wonders at my patience lol. So the stress level was hiiiigh. Each time I've had a HUGE flare up like this, when I barely am able to eat, have almost 24/7 issues, and the panic attacks return, are when I have big stressors. The 4th flare up was when a tree fell through out roof and landed a foot from my head while I was asleep, and because of COVID, it took foreeeeeeeeeever to get fixed, so I had to move sleeping arrangements around. But for me, change is stressful. I have been diagnosed with the obsessive side of OCD, so stress is something I handle very poorly. Even though I try so hard. Truly, I try so hard to manage everything and be strong, but each day is a battle. That 4th flare up, thankfully, was only about a week long. My last flare up is the one happening now. And it reminds me of the one I lost all that weight. It's been going on since.... Aug 18th. I know the exact date because the stomach issues started in the car driving to get kids and I had a severe panic attack because of it. I tried to get home with the kids for 2 hours and barely got anywhere. I had to call a friend to get us, and my car home. Since that day, it has just declined. I've lost about 20 LBS already since then, probably more. Just trying to be VERY careful about foods and serving portions. It seems everything I eat fails me. Ground turkey burgers treated me so nicely for about 3 days. But since it was all I knew to be safe.... I ate the Dickens out of them. And now, they give me issues lol. I feel like I can't win. So have moved to ground chicken patties and am just trying my best. I have a no dairy, No/ really low fat diet, no fried foods, no gluten.... Girl tbh, I'm just eating burgers. I'm so terrified to eat something wrong and be thrown back into a severe panic attack. I've gotten the anxiety under control enough to where I no longer get severe attacks, just pangs of anxiety and they're fairly consistent, even with the xanax. So I'm scared to open up the bland diet much farther in fear I'll be back to step one with the panic. But it does make me feel some solace in the fact I'm not alone with these specific symptoms. I appreciate you taking the time to reply with your story. I have my CT scan first thing in the morning, and I'll will def. Let you know when I get the results. Just know I appreciate you and sympathize with you and pray you keep strong and that symptoms lessen. Wouldn't wish this on the person I like least in the world.

Maureen1958 profile image
Maureen1958 in reply toLawli

Thank you for such a lovely reply. I hope all goes well tomorrow with the CT scan. And yes, please let us know the results. Also, I must say I think you are amazing, my son has ADHD too. I know how hard that is to cope with along with IBS, but at least I only had one child and my husband came home every night and helped out. I don't know how you do it on your own!

Lawli profile image
Lawli in reply toMaureen1958

Girl, with trouble and a handful of stress🤣 but I will make it through it just as you do/did. I always try to remind myself that I am stronger than I'll ever give myself credit for, as are you!

FRreedman profile image
FRreedman

As you are trialling the Fodmap diet (is it under the supervision of a dietician?), you are doing the correct things (checking and omitting certain items). The only advice I can give you, having suffered with IBS and IBD for 54 years, is there is no rhyme nor reason to what needs to be excluded or included, however, there are some known antagonists to the condition(s):-

Fizzy soft drinks and alcohol are a definite NO, if you are suffering from diarrhoea or excess wind, (but Diet Coca Cola seems to assist in some cases if you are constipated). Foods to avoid, in almost all cases, are peanuts, brocolli and cauliflower, but Kiwi fruits (2 per day) may help with constipation. Stress is ano-no in all cases as it will exacerbate whatever problems you are indicating (ie; make constipation worse or increase the volume of diarrhoea). Good luck, keep well and stay safe.

Lawli profile image
Lawli in reply toFRreedman

Fr, thank you for replying! Do you mind me asking if one day, a food agrees with you, and there's no issues, but the next day, it can cause you issues? I have found 3 absolutely safe things so far, but I believe I'm overdoing them. And that's why they are now trying to cause me issues. I eat a portion that my 5 year old does at meal times. If I eat too much, it's a guaranteed issue. I have a GI and he did suggest the FODMAP diet. Even prescribed me IBS medications, but no diagnosis yet, as I'm undergoing tests still. My CT scan is tomorrow morning. SIBO test was negative. COVID slows everything down, so it's taking time to get the tests done. I've noticed that bread/gluten is a HUGE trigger. Although, even gluten free pasta/pancakes/bread give me issues if I eat any of those more than once a week. Fatty foods are a nope. Leafy greens a nope. Anything spicy or acidic is a nope, because of the GERD. I drink only water. No teas, no coffee anymore.... I miss it terribly, no soft drinks. Literally nothing but water. Occasionally a smart water if the diarrhea is bad. I rarely eat nuts, except I do drink almond milk, because dairy has proven to cause me issues lately. I have noticed that my flare ups directly coincide with big stressors. If you read my above reply to Maureen, I go into more detail about when flare ups happened and what caused them. I believe this flare up has to do with just the overall stress of the poo year 2020 has been. I have 2 kids(one that is adhd and head strong/stubborn to a fault, but too young for medicines, and another that has a learning disability) that I was homeschooling since March due to COVID. A hubs that is military and rarely home, so it all falls onto me. Tbh, I run off of stress in 2020. I know I need to minimize it, but my youngest makes it difficult to go stress free lol. But you are absolutely correct, when I'm able to manage my stress, I notice a drastic decrease in symptoms. This year has just been a doozy for stress for me. I will try the kiwi for sure and really appreciate the advice. I have a CT scan tomorrow morning, so I will keep you posted on how that comes back. Thank you for replying and giving me some tips to help me through. I'm open to anything at this point. I hope things get better for you and appreciate your reply so much. I've felt so alone and like nobody understands. My first GI appt was a rush order from my physician, so he didn't even care to look at my food diary lol. So I'm trying to just reach out to those who may understand and have some insight and advice.

FRreedman profile image
FRreedman in reply toLawli

Yes, I have found that I can eat a fruit one day and it is fine (no issues), and a couple of days later the same fruit will upset me. I know it is not easy with the stress, but it is such a major contributor to IBS they should supply stress free time on the NHS. (if only). Also, avoid sweetcorn (it is indigestible and comes out exactly as it goes in. There are many good people on this site who are all prepared to give advice and help, but, if you are concerned with what they advise, always trust your own instincts and check with your on medics. Stay strong and stay safe.

Lawli profile image
Lawli in reply toFRreedman

Thank you so much. I'm sure the stress will subside and lessen as I get through more tests and get more answers! Y'all have been so kind and informative here, more so than my doctor's so far, for sure lol. It's very much appreciated!

Susan72 profile image
Susan72

Hi Lawli, Hoping you get better. Regarding the FODMAP diet, I hope you have the Monash app. To answer the question of why you may have different reactions to the same food, this article might be helpful: instagram.com/p/CC0-CyNJ5K1/

Iesgobdafydd profile image
Iesgobdafydd

I tried for ages to work out what foods were triggering my IBS symptoms, and in the end all I managed to do was to work out a handful of ones I knew were pretty reliable in terms of keeping my symptoms minimal - since nothing I could eat seemed to get rid of them completely, even eating nothing didn't do that. It was a very limited diet, I balanced it as best as I could and made sure to take a multivitamin and multimineral supplement regularly as well. Eventually I figured out my IBS was caused by TMJD, and working on the TMJD cleared up the IBS. I'm not sure if it will be helpful to you or not, but I wanted to share some of my experience around anxiety and physical health. My efforts to fix my TMJD involve spending a lot of time lying in bed relaxed, feeling for where the connective tissue in my body is pressing in places where it shouldn't be and causing discomfort, and then working a particular muscle in that area to relieve the pressure. One thing that is crystal clear to me from this is that physical tension in particular places inside me, in my gut or near my heart and lungs, is presumably one of the physical components of anxiety, and makes me feel anxious and triggers my brain to start rummaging around looking for why I am feeling anxious, what there is in my life to be anxious about (and of course there's always something or more often things!) Because the tension often moves fairly quickly from one area to another as I work, the feeling of anxiety usually evaporates as quickly as it came, and so it's easy to see it came from the pressure.

Most people's IBS may not be caused by TMJD, but it wouldn't surprise me at all if trapped gas causes similar physical sensations which the brain interprets as anxiety.

I read something about anxiety which I found quite helpful in combating some of my own fears, which is that when we are presented with something that might be a panicking situation, we have a brief window of opportunity in which the conscious brain gets to decide whether we're really about to get attacked by the animal that's charging at us or actually it's friendly and nothing to worry about. If I can convincingly tell myself that actually everything's safe right now, then I can ward off a potential panic. The difficulty usually is in convincing myself far enough, particularly if it's an area where I'm sensitized because of past bad experiences.

It sounds like you are coping amazingly well in an extremely difficult situation. I hope things start getting better for you soon.

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