Delicate??????: Forget the word... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Forget the word ‘delicate’ when discussing bowel problems!!!!

Everybody has bowels, and bowel activity.

I have had systemic sclerosis for thirty years.

I have had five operations, and have ended up with a colostomy, and mesh for a hernia.

All this because of slow motility, and lack of peristalsis in the digestive system.

Yesterday, I was rushed to hospital with extreme pain/vomiting, having experiencing months of intermittent constipation/ diahorrea.

Could It be a blockage? That was the question.

I spent hours in A&E have tests, and relating my history to a variety of medics, before being transferred to a surgical assessment ward where I was seen by a surgeon who told me that an x-ray had revealed that I was full of poo!!!

He appeared not to know anything about my disease, and suggested that I should be prepared to live with this worrying and unhealthy condition, taking large amounts of laxatives.

I pointed out that this would condemn me to a very poor quality of life, and I couldn’t accept it.

I needed a proper analysis of the reason for my ‘plumbing’ not working!

After all, surgeons are like highly qualified plumbers/ butchers.

If a plumbers job is faulty, he is expected to solve the problem, although I am well aware that someone with SS problems presents challenging situations, as talented, clever people, whom I greatly respect, they often don’t seem to be interested in the whole story.

Eventually, I was seen by a senior colorectal surgeon, who couldn’t decide whether I had ‘stoma stenosis’ until he had passed a flexible tube through my bowel.

I have to return to hospital for this ‘treat’.

If they require me to drink two litres of ‘Moviprep’ in preparation for this, it is doomed to failure.

I simply cannot swallow so much liquid.

So, watch this space!

12 Replies

Really feeling for you Mumso. Good on you for having the energy to be your own advocate and pushing these specialists. Could this be something to do with the vagus nerve sending the right messages to the stomach/bowels regarding emptying. Have you watched the Diagnosis Detectives on BBC. We should all have this opportunity. Good luck going forward, keep us in touch cause i think there are lots of us SS warriors suffering different degrees of bowel issues

I didn’t realise that such complications existed in relationship to the bowel due to scleroderma and your reply was very informative. I stand corrected and agree using the word delicate was unnecessary. I hope all goes well with your future treatment and you find the answers you are looking for that may help improve life quality.

I have something a little bit wrong with my bowels but nothing like you, so not a lot that is directly comparable - I am on domperidone to kick start my peristalsis and that stopped my stomach fermenting food and ejecting it. Just thought I'd mention domperidone in the faint chance it would be helpful.

When this happened:

"I spent hours in A&E have tests, and relating my history to a variety of medics, before being transferred to a surgical assessment ward where I was seen by a surgeon who told me that an x-ray had revealed that I was full of poo!!!"

However did you refrain from saying "no shit" ? :)

Edited to add - went off to Google stoma and Moviprep and regarding the latter found this from colorectal cancer website

"Will I be up all night with colonoscopy prep?

Some colonoscopy preps are taken in one evening, others may be a “split-dose” and taken between an evening and the following morning. If you begin drinking the colonoscopy prep in the evening, bump up the start time a few hours earlier to prevent running to the toilet all night.6 Sep 2019"

So that might be helpful in terms of liquid volume.

Mumso in reply to Poppy221

I have needed to go into hospital the night before to have the prep: which has always been a disaster!

It’s bad enough having diarrhoea when you have a rectum, imagine it with a stoma bag!!!!!!

Sorry to hear about your hospital stay. My comment is different to others but do you think it might be your mesh causing problems. I am one of thousands of women fitted with a mesh and now suffering from many automune diseases, and bowel problems. I am unable to empty my bowel as I should and have to take medication to go, this leaves me in a lot of pain.

Mumso in reply to wednesday

Who knows? Could be the mesh, but at the moment it seems more likely to be ‘stoma stenosis’ I am struggling to find out when the surgeon I saw, intends to perform the colonoscopy he promised.

Try getting back to the department you were discharged from, a doctor, a nurse, appointments.

It’s like banging your head on a stone wall!!

But I never give up.

Just emailed the surgeon’s secretary.

You need to keep abreast of everything.

It’s called survival!!!!

Even with a knowledgeable gastroenterologist (not a surgeon) answers/effective remedies may be few, but these are major issues.

For those interested, look up diet Coke for 'pseudo-obstruction'.

More, or even some, research is needed!

Regarding the Moviprep, there are alternative bowel preparations which have a reduced volume, such as Plenvu. It might be worth mentioning to the consultant that you are unable to take large volumes of fluid and if it would be possible to have an alternative, lower volume bowel prep.

It may also be worthwhile considering taking laxatives in the week leading up to the colonoscopy (obviously not on the day of the bowel preparation). This would help to obtain clear views of your bowel.

You can also order larger stoma bags that you can use while you are taking the bowel prep so that it wouldn't need to be changed/emptied as frequently.

Hope that helps and good luck

Mumso in reply to EThomas

Many thanks..

I will certainly request this.

I’m only recently diagnosed with SSc but was already diagnosed with Sjögren’s, severe degenerative disc disease, hypothyroidism and other stuff.

My bowel problems of chronic constipation really kicked off not long after I was a) given a cholecystectomy I didn’t need, shortly after having pancreatitis misdiagnosed as UTI sepsis! I was then taken off steroids and dmards and got Guardia from drinking untreated water in a rental cottage we lived in for six months.

I had a colonoscopy and wasn’t given enough sedation or pain relief and all they found were bleeding haemorrhoids. Then they blamed my constipation on dryness of Sjögren’s and related IBS-c. I tried all the common laxatives but due to loss of sensation I was constantly oozing and having accidents. I saw a lovely gastro who gave me a medication called Constella/ Linaclotide - which seemed to work like the first glasses of Kleen Prep - meaning that I was homebound for at least 4-5 hours after taking it. But it was better than nothing or the ooze and IBS caused by laxido etc so I saw him again and he was pleased to discharge me with this Linaclotide. It means I can plan around taking it and being able to plan a bit better is good.

Looking back I wish I hadn’t let him discharge me though. Due to excruciating bouts of gnawing upper abdominal pain and kidney infections I was referred back to a nice little guy from Spain, had a gastroscopy showing gerd and gastritis - which he described as “stomach with watermelon-like petechiae”. I now think this might have been telengecstasia since I have them everywhere.

Then I saw a horrible gastro in November after requesting to go back to first one. He said my problems were all functional/ non structural ie not IBD or blockage and rudely shoved me off with an info sheet about IBS. He snapped at me that I was lucky my tummy issues were functional not bowel cancer or IBD.

Since then things have continued erratically. Some nights I wake with terrible upper abdominal pain and glug Gaviscon and Mebervarine. Others I sound like a waterfall - especially since I’ve started taking pilocarpine for very dry mouth. I’ve reduced Linaclotide to every other day as can’t keep up the slurry spray thing daily. If I have to go anywhere far from toilets now I take pads, tea tree, wipes dog poo bags and panic a lot.

When I had Iloprost infusions 3 months ago there was only one toilet on the ward and I seemed to dominate it entirely. Same in A&E more recently. I then end up having to take horrendous amounts of things such as suppositories, liquid Senna and 8 sachets of laxido with 2 Constella after 10 days of nothing whatsoever happening. Worse still is when I’ve had to relent to flares and take pain meds.

There is no balance apart from occasionally now since starting pilocarpine - I seem to be going more often. So my rheumatolgist has referred me back to the original chap and told him I now have Systemic Sclerosis as well and incontinence overflow. I see him by VC the morning at 9.20 after my next lot of Iloprost.

I was just trying to work out whether he’d mind if I’m sitting on the toilet overflowing on his prescription med after 3 days of not being able to risk taking Constella or anything else due to 3 days of infusions as an inpatient and one toilet to reach in time ?!

What I’ve decided is that one way or the other, whatever the cause, alternating between severe constipation - which has hospitalised me 3 times since I was a kid, and diarrhoea - is meaning I don’t have much of a life at all. There is everything else that goes with having CTDs and then there’s this.

So this time my main request will be not to be discharged with IBS-c - but instead to be kept on his books with Sjögren’s and Systemic Sclerosis overlap as cause of my GI problems. These people need to know or learn how it is for us with CTD related GI problems. I’m sick and tired of being expected to use euphemisms such as number 2s, feeling humiliated and anxious and getting fob off labels such as IBS. I want the same kind of treatment from these doctors as if I had IBD.

So thanks for your post it’s given me confidence to be more open and I wish you all the luck in the world with this extremely debilitating stuff. X

Wow! Poor you.

What a history.

I hope you are feeling calmer, and finding a pathway through your jungle!!


I too have systemic sclerosis but only since 2010, prior to that I’d had scleroderma since 1996, when I lost both my colon and large intestine due to necrosis. I ended up with an ileostomy. I cannot go to the toilet at all whereas it would seem you can!

I’ve read about people being offered a choice between the two. Was this ever put to you? It certainly would alleviate the ongoing problem and pain you seem to be experiencing now. 🥴

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