gut symptoms

[volvox45]

For the past couple of months I've had intermittent cramping pain just under my ribs, mostly left side but sometimes right across. This is accompanied by bloating (by evening I can't wear anything around my waist, too painful) and mild nausea. I have limited systemic scleroderma which mostly affects my guts (SIBO etc) but this is a new symptom. Is it normal? Will it go on for ever? Is there any treatment? Could it be related to something else entirely?

[amc282]

I have been experiencing the same issue on and off since 2015. I finally have a re-referral to the gastro clinic on 18 February 2022 (I have waited 65 weeks for this…) after having been dismissed as hypochondriac before finally being diagnosed LSSc. A phone appointment??? Ugh. This condition is definitely attacking my digestive system. I have very slow motility and am experiencing dysphasia. I find the pain increases after I have eaten. I am wondering if it is new food trying to push old food down through the intestine. I don’t know. I hope I don’t experience gaslighting with this gastro doc. They all seem to specialise in IBS, nothing else.

Have you seen a gastro lately? Do you have dismotility and dysphasia?

[volvox45 in reply to amc282]

Good luck with the gastro clinic! Not long to wait now. I do see or speak to my gastro consultant once a year – last time in December. He's pretty good with SSc actually. I don't have dismotility or dysphagia although I am told my oesophagus is damaged and that I have "silent reflux". I wouldn't know about either if they hadn't told me!

My main symptoms are gut-related: weird bowel habit, poor absorption and intermittent diarrhoea plus this most recent symptom of pain which may or may not be related. Oh, and Raynaud's, of course!

[BlueSaphier3]

I have had the same symptoms for so long, not much relief. Had SIBO, dismotility, GERD and disphasia. Pain under ribs and bloating is extremely uncomfortable. I had my gall bladder removed then one year later had blocked common bile duct that needed emergency procedure ERCP. Gastro doctor had me on Motegrity medicine that helps everything move along the intestines more easily. Unfortunately my insurance doesn't cover it starting this year so I have to find something that will possibly help. It's not fair that a medicine that works is not available for a symptom that is so painful. Good luck to you and amc282. If anyone finds more relief please pass it along.

[amc282]

Well, update. Had my phone consult. Gastro consultant did not even have the courtesy to speak with me and fobbed me off on his young registrar who asked the most uninformed questions. She basically offered me nothing in terms of care. A SIBO test, that was it. She wants me to stop lansoprezole as well. I have silent reflux! She told me to chew my food well, eat more roughage, take a laxative for my chronic constipation, lose weight. These people are clueless. We, as SSc sufferers get tossed into the too difficult to deal with pile. I was so angry. I will be writing to my Rheumy and the consultant with a copy to my GP.

[DJK99 in reply to amc282]

Hey amc282 - sorry I've only just responded to this as I've only just seen it. I was so sorry to read of your experience on the phone. Just awful. I wonder which part of the country you live in? I am in the South.. I wanted to hear how you have got on since, if you don't mind?

As far as me goes...I was diagnosed with IBS on the phone in the middle of lockdown, but have had severe constipation since very young (7 I think) and am now just off 60. On tons of meds ie laxatives, anti spasmodics etc and have an excellent diet since very young and drink all day and night due to Sjogrens... dry as a bone! I am slim and keep myself as fit as I can by doing yoga and exercise most days.. as I have all my life. It matters to me how I look... but for the last 2yrs I look 6mths pregnant tbh. My guts have always been very bad but have been increasingly awful to the point of despair in the last 3-4yrs (severe distention bloating (to the point of tummy button hernia), dysmotility, severe consitpation, blockages, beyond gas, bad taste in mouth of waking, severe cramping esp at night, belching, and just agony at times.. sometimes for many hours) and I am just about to meet in person with the last consultant I spoke to on the phone last year and, frankly, he was so awful that I have booked myself in FINALLY for a private consultation with a female specialist who has been recommended to me (and that person also said she had suffered 4yrs under the chap I am meant to see soon via NHS and she finally bit the bullet and found the private person I am going to see - sorry garbled!). She has IBD...although doesn't look at what she is eating and, well, no wonder she is having so much trouble eating what she does with IBD....Of course its not all down to diet, but poor woman seems to have no control over hand to mouth.. I have lupus, sjogrens, heart diseases, breast cancer and severe raynauds... all of this all my life (cancer just for 3yrs). Someone on a post I put on recently suggested SIBO testing and this has finally sunk in... so I'm going to find a good one to do asap so hope I get the results back prior to my consolation... better get on it actually.

I just wanted to ask you how you've been getting on, if that's ok, and what your rheumy said to your update 6mths ago? Has anything changed? Are they not working together to help you? My rheumy won't send me for testing for Scleroderma and yet I have finger and toe tip pitting/severe chilblain things, strange nail fold blood vessels stuff (and just like those on an excellent med paper picture) , splinter hemorrages in my nails too, tangleciasta or however you spell it on my face and body, raynauds, and all those vile gut issues... I am seronegative Sjogrens and now I am Lupus like syndrome but was SLE for 3 yrs but he changed it due to me never having positive ANA blood test... even though he was adamant for those 3yrs I was SLE due to all my obvious symptoms, and thought I had been born with it on meeting him.. plus a lovely pic of me as a toddler with malar rash. Anyway, sorry for all my info.. Hoper that's OK, and you're still awake!

I didn't know the NHS did SIBO tests? How did it go? What was the outcome?

Thanks so much for listening, and I sincerely hope you have had a face to face by now and things are getting better for you, although I know Scleroderma is horrific by all accounts... So sorry.

Best wishes, D

[amc282 in reply to DJK99]

Hello D,

Thanks for connecting! I am in the South West. NHS is in a shambles here. I am sorry to hear of your struggles with these awful illnesses.

With regards to an IBS diagnosis, I would definitely question that one! IBS usually presents between the ages of 20 - 30 and rarely later. How could they diagnose you over the phone for goodness sake? I would chat to the new consultant about gastroparesis and SIBO. My test comeback negative. I believe I am struggling with gastroparesis symptoms. Satiety, bloating to the size of a house, etc, etc.

The bloating is common in these illnesses. Weight gain has been a struggle for me due to removal of my ovaries in 2017 and the consultant refusing me HRT. This is a big problem here in the UK. So many women in agony. I also tend to anxiety eat. I have Limited Systemic Sclerosis, Sjögrens, Hyperlipidemia, Silent Reflux, so far. 😩 I am still struggling to despair with silent reflux. I think it may be in my throat and an ENT may be the person I need. Especially since these gastro jokers keep telling me I don't have reflux.

I have yet to speak with my rheumy about all of this. I will see him in October. I am also annoyed that my annual echocardiogram has been delayed due to BREXIT, COVID, Staff shortages, blah, blah, blah, blah!

Happy to listen anytime. We are stronger together!

Best wishes to you!

[DJK99 in reply to amc282]

Thanks so much for your response amc282, really appreciate it... and your acceptance of all my blurb on moi.

Ummm... has anyone talked about GERD with you? And yes, you need to see ENT.. well, I think!

So sorry about your anxiety eating - is there anyone who could help with that?What sort of things do you go for when anxious.. it will have an impact, of course... My anxiety is the other way in that I worry about becoming unable to get into my clothes... and just not look like I used to. So it's easier for me... ie I get anxious if I change shape. I need to remain the way I've been since younger... so I work at that.. with exercise (such that I can these days, and frankly it's VERY hard pushing myself to do it each day...but... it does help HUGELY with anxiety... you produce positive hormones or endorphins etc - I can certainly vouch for that). Today is the first day of the rest of our lives... so I can only say, take one step at a time.. and maybe find someone to talk about the way you support yourself in times of upset and anxiety. My friend spends thousands on clothes... she doesn't need, and has a bedroom full of bags and nowhere to sleep even. It's her way of feeling better. Me? Well I listen to music (a complete passion since birth) and, yes, I enjoy a G&T now and then... and a slice of cheese! Or two!

I have had these symptoms all my life... so definitely 20-30's but not like this!

Do you have heart disease then? Of course you do if having echos.. so sorry, it is one thing after the other with all this I know. I have AF and a leaky aortic valve.. My brother (who has just passed with Parkinson's - sepsis in the end... had an aortic pig valve.. and a great" zip" scar up the front). My AF has been particularly bad in the last two months, so maybe it's time for another ablation. Do you have all this? I have a small hole in my heart too - which, apparently, is why I get migraines with kaleidoscope lights - do you get that? Also I have an anomalous coronary artery or something... but thankfully not the one that means you have sudden death.. mine is a "benign course" or something. Had those last two all my life - but only discovered in my last echo last Dec! He was a pretty good tech!

Anyway.. back to guts... I've not looked into gastroparesis so shall read up... but the SIBO does make sense, so thanks to the person who mentioned it in the last few months. so the nHS DO do SIBO tests... not sure where I heard they didn't. But best I get this done pre my private consultation, how long did it take to get the results? Mind you.... NHS.. not really the same as doing it via a private company eh!

Thanks so much for your response.. I hope mine is helpful.. I wish you speedy support with your echo - er, are you having worsening issues with your heart btw? If yes, then maybe you could ask your GP to ask for it to be made sooner... mine did recently when it was clear things were going a bit wrong (sudden oedema in feet and legs, long bouts of AF, stroke like symptoms).

I do hope you get better support... Thanks so much again. D x

[amc282 in reply to DJK99]

Hello again! Yes, I know when my anxiety strikes and which foods provide comfort. Carbs! Ha! But, my early satiety is keeping my food intake lower as I feel full after a few bites of food. Portion sizes are smaller and frequency of eating less. I may be forced to lose weight. I am very tall - 5’ 10” so a few extra pounds doesn’t hurt too much, but I really need to lose about 2 stone. My SIBo test was done on the NHS, yes. Luckily my echo and lung function tests are monitoring only at this stage. But, monitoring is important! It prevents it getting out of hand thereby costing the NHS more money. Same hopes for, and that you get some relief soon. X