Twisting and it's nothing to do with Chubby Checker.

[angelahook]

Hi all I don't post very often but I do read what you guys post. In fact I would say that I have learnt nearly everything I know from reading posts on this forum with regards to limited systemic cutaneous sclerosis.

I have had Scleroderma for a long time, but not known, mainly because nobody I know had ever heard of it. After around 10 years of messing around I got diagnosed and settled into living around my biggest issues which is the effects of Raynaud's and the G I tract. The problem is if something different starts you wonder if it is Scleroderma and don't always consider it may be something else.

I started to have what I called attacks where I was in a lot of abdominal pain so much so I had to take paracetamol, go to bed before I collapsed with raised blood pressure. After fully emptying my system with going to the loo and vomiting then the pain would go away and other than feeling a little weak it was if nothing had happened. At first they happened perhaps around every 3 moths or so. My husband would be furious with me because an attack could finish around 2.00am and i would get up and go to work. Well that was at least 5 years ago and it has taken me till now to get the issue resolved. I had lots of CT scans, OGD, Colonoscopy and MRI and nothing was showing up other than the Scleroderma had caused the small bowel to be dilated more than it should and made it floppy. Due to the poor motility SIBO was diagnosed and I have a course of antibiotics every 3 months to help clear the bad bacteria out.

In the meantime I must have told 20 different doctors about these attacks which were becoming more frequent and more painful to the point I lost 4.5 stone in weight and was having abdominal distension so bad it made me look 9 months pregnant. In the end I was taken into hospital as an emergency and still in the attack a CT scan showed a twisted bowel. Trying to cut the length of the post down, I have just had abdominal surgery where the bowel was fully untwisted and the small bowel was put back into position. The surgeon said it was the Scleroderma that had made the small bowel so floppy that it was all over the place and he had to reposition nearly all of it. No wonder I was full of gas, SIBO was making it a the rate of knots and it couldn't get out because of all of the damage. My surgeon said to me " you know you were not making it up". At this point I nearly burst into tears because at last someone knew I was not neurotic.

I post this just so that anyone who is having problems with their GI tract, as well as all the regular stuff eg. GERD, don't automatically assume it is the Scleroderma per se. The twist causing the attacks was a natural bend in my bowel but it was the Scleroderma dilation that was making it twist more.

Sorry for the length of the post but I wanted to inform incase some other poor soul is going through something similar. Keep well everyone I am looking forward to be able to go out for a lovely meal when I am fully recovered.

[CarolMcl]

A very informative read but sorry you've went through so much to get to this conclusion. My main diagnosis is lupus, pulmonary fibrosis due to same, Raynaud's and a scleroderma overlap. Although my blood results were positive for scleroderma my consultant is more focused on the lupus. I have gerd and for many years, problems with my bowels. Tests and colonoscopy haven't shown anything but recently I went private due to abdominal swelling, pain and going between loose bowels and constipation. Anyway I had 2 tests on my stool sample and both came back negative so it was suggested by the doctor that it could be to do with my scleroderma becoming more active. He has written to my rheumatologist about it but my next appointment isn't due until December. Will just need to wait and see 🌹

[angelahook in reply to CarolMcl]

Good Luck I hope it doesn't take you as long to get sorted.

[CarolMcl in reply to angelahook]

Thanks 🌹

[honeybug]

Hi angelahook 🤗🌿🌸🦋

I’m sooooo sorry you suffered so much with this but thrilled to hear you got it sorted and recovering.

Praying you’ll be fully recovered soon and able to go out to enjoy that meal.

Love and prayers,

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[angelahook in reply to honeybug]

Thank You 🥧🍨🥂

[honeybug in reply to angelahook]

Most welcome love 💕

[OldTed60]

Hi - so sorry for what you’ve been through. Is this what is meant by pseudo obstruction I wonder? I believe this is particularly associated with scleroderma and can affect both/ either the small and large bowel.

My systemic sclerosis has also affected my lower GI and stomach severely but I’ve found the gastro and colorectal specialists rather unaware or ignorant about this disease. They have diagnosed both SIBO and Gastroparesis but it took an age. And I recently had surgery to form a loop colostomy but suspect I needed an end one or an illeostomy as I’m still very laxative dependent still have to irrigate, alternating between diarrhoea and constipation regardless of what little I eat.

It’s good that you had tests to exclude other causes of your stomach pain. My late mum had similar in the early 1990s and was finally rushed to hospital with a blocked bowel and a large knot was found and removed from her small bowel. Apparently it had kinked up to such an extreme that an actual knot had formed. Given she had facial rashes, felt the cold very badly and was prone to psychotic episodes, died suddenly of undiagnosed but severe atherosclerosis, my rheumatologist and I have wondered if she perhaps had neuropsychiatric Lupus. I’m certain now that she had EDS, which also could explain the serious issue in her small intestines that almost killed her. I guess that, given how rare systemic sclerosis is, it is often the last thing on GI drs minds when they come across the symptoms and signs, unless already diagnosed as you were. I never assume any of my GI problems are necessarily related to my scleroderma and in fact the colorectal surgeon I’m under seemed only to focus on my hypermobile spectrum disorder, Sjogren’s and hypothyroidism, not even mentioning that I have systemic sclerosis in her letter or on ward rounds. I found this frustrating, especially given that she was relying on tests performed 3 years ago and wasn’t going to repeat them to check for progression. I read that pseudo obstruction is often associated with my rare SSc antibody but no idea how it’s diagnosed or treated. I hope that your problems are now resolved through surgery but please do be very careful when you reintroduce foods!

Ps great post title! 🕺🏾

[angelahook in reply to OldTed60]

HI

I have read most of your posts and I could sense your frustration because it is difficult to get anyone to consider the effects of Systemic Sclerosis. It wasn't pseudo it was a non mechanical partial blockage. This was natural in my bowel but because the small bowel is so floppy due to the Scleroderma they think when the gas/food couldn't move along due to the lack of motility this was causing the twist to tighten even more. After bowel rest when it relaxed then it went back to a resting place of partial blocking. I have already had one Ileus and had to go back to the beginning and re-introduce more gradually.

Thank you for your reply and I wish you well

Angela

[OldTed60 in reply to angelahook]

Ah I’m with you now. Someone recovering from a small intestine resection (she had Crohn’s and MS) opposite me on the ward in July had Ileus and was given NJ and stayed in hospital for weeks until it relaxed and started working again. She was planning her first big meal with me in great detail! X

[angelahook in reply to OldTed60]

Yes I know what that is like.

[Buttsy]

So pleased, you finally got it sorted , after all the suffering you must be relieved and looking forward to a slap up meal.

Enjoy ! 😊 take care x

[angelahook in reply to Buttsy]

Thank you. You have hit the nail on the head, relief, I couldn't think of any other way of explaining what was happening so to get Mr Ghallub who knew what it needed was pure joy.

A couple of more weeks and i don't know where I will be going first to sample this countries delights. x

[Clangerscat]

Thank you so much for sharing this awful experience. Forewarned is for armed as they say and you are so right we put up with things because of the assumption it’s just the scleroderma again. Be well soon and enjoy that meal! 🤗

[angelahook in reply to Clangerscat]

Thank you so much. I just thought there may be someone out there trying to convince their GP possibly. So if the post helps that will be a good job done.

[Lupiknits]

Thank you very much for this, and I’m sorry you’ve suffered for so long before it was sorted out. It’s extremely useful to know.

I’m having a lot of trouble with my bowels after years of mostly upper GI problems which continue. Close attention is being paid to the bowels now. Some years ago it was constipation but now it’s diarrhoea ( with leaks which does nothing for one’s social life). My Rheumatologist is coordinating attention to this.

My first colonoscopy showed diverticulae (sp ?) they said looked like I’d had lifelong constipation, which I hadn’t had. Another colonoscopy with biopsies is coming up . My Rheumy wants to see if it’s microcolitis, which can be caused by scleroderma.

I take Rifaximin for a week every month to control SIBO. Glad I only looked six months pregnant before that got under control!

As for weight, if I could eat everything I miss and daren’t have, I’d be at Weight Watchers within a year.

[angelahook in reply to Lupiknits]

I hope they sort you out more quickly than they did me. This sounds a lot like what happened to me. The problem I had was by the time I got to see the doctors the natural twisted bowel had relaxed so I had to be seen in the middle of " an attack as I called it". I still have to keep the SIBO under control and always know where the loo's are when I go out but just being gas and pain free is something I will never take for granted again.

Good Luck and take care xx

[Lupiknits]

Thank you. They’re on the case. I’m fortunate to have a good Rheumy who coordinates well with other departments: they had a group meeting to discuss my case. I’m in a research study, which helps. Otherwise I’m a bit scared!

[Ballymunter]

thank you so much for sharing your experience and I also have limited s, and have trouble with bowels

[angelahook in reply to Ballymunter]

Because of the poor motility caused by the scleroderma it is very common for us to suffer from SIBO. The SIBO was what I was concentrating on trying adjust my diet to create less gas. Of course it wasn't helping because the gas couldn't entirely escape because of the partial blockage which I didn't know about. I still have to look at my diet again once I have got back to full health because I must try and restrict the gas production as much s possible.

I wish you well on your journey because we are all having a different experience. Use this site because it will sometimes show you the way to go