Scleroderma bowel

[Badflower]

Hi All, I have systemic scleroderma, pulmonary hypertension and kidney cancer. All diagnosed around the same time. The thing that affects daily life the most is my bowels that do not behave in a fitting way that I find acceptable. I take loperamide every day. I have a referral to a gastroenterologist but when the appt came through it is a video call next April 2025. I have researched myself and I want to try and go down the enema route. Is anyone doing this at home and did your GP provide? Any advice will be appreciated as it’s making me feel very sad as leakage is constant even with the loperamide.

[bearman]

I was given co-co-damol when I did something to my knee. While that was healing I discovered that my bowels were improved. With the pills I had left I started taking just one each morning and after about an hour can go out without having accidents so it has completely changed my life. On days when I'm not going anywhere I don't take one and I'm in and out of the loo all day. You can buy co-codamol over the counter, you're only allowed to buy 1 pack but the 16 inside last over two weeks. Then you might be able to get them prescribed.

[LadyTrundle]

Have you tried excluding different sorts of food? I had suffered similar to you for years. They put me on a low dismal diet which helped but hard to sustain at home. You you look at the FODMAP lists and try excluding a different type at a time for eg 3 weeks and see if if helps. Then add it back in and try with the next. Unless excluding one dramatically helps, in which case you could stop at that!

I’m mostly managed now on 1mg loperamide 40 mins (that bit is important) before each meal. But if I eat fermented food eg sauerkraut or kimchi, it all goes leaky again.

[OldTed60]

Codeine might help, also marshmallows and jelly babies apparently can thicken our output. But you really need testing first to check you aren’t constipated further up as this can cause diarrrhea overflow. However I only learnt about this because I now have a stoma thanks to scleroderma bowel. In my case I didn’t get much from enemas so needed a balloon catheter irrigation system and strong laxatives daily. But then I’d alternate between constipation and diarrhoea and often have accidents so I feared leaving home.

It took me years to get any useful gastro input at all. I maintain that bowel issues are one of the most isolating and under-researched aspects of Systemic Sclerosis - particularly the incontinence. Finally I was referred to colorectal team who have helped me much more. Having a stoma (just over 4 months old) is quite a major adjustment and the surgeon decided that ileostomy would be too risky - having tested me three years ago for slow transit and found the problem at that stage was mostly damage to my recto sigmoid (lower part of the large bowel). However I also have reflux, gastroparesis and SIBO. I was showing signs of malabosorbption in my bloodwork so she decided early on this year that stoma was now urgently needed. It’s helped a lot although I still have to use smaller amount of daily laxative and enema a few times a week as loop colostomy brings other ugh issues.

But overall I’d say my quality of life and gut motility with a stoma has improved so far and I can go out without worrying as much - although I do still have to try and regulate my output to avoid stoma blockages. I still have to avoid fibre and have a very restricted soft/ liquid diet with nutritional supplement added to decaf teas and coffees.

[Ffrwd]

My understanding of the bowel problems are there are two main problems. The smooth muscle in the gut normally squeezes the food through it, an action called peristalsis. Because the smooth muscle does not function properly in scleroderma this peristalsis is reduced and dysmotility occurs. This means you can get constipation and the bowel does not empty properly when passing a motion. Both loperamide and especially codeine can make the dysmotility worse. Leakage often occurs because the internal anal sphincter is smooth muscle and stops functioning properly in scleroderma. There are two sphincters. The internal one usually acts as a gatekeeper. It holds the faeces until there is ‘enough’ then lets it through to the external sphincter which is under voluntary control. You then become aware of the urge to go. Because the internal sphincter is not working this gatekeeper function is lost and there is a constant throughput to the external sphincter which can lead to leakage. It also means that every time you go to the loo there is something there but because of dysmotility you can’t always pass it all. I used to find myself trapped on the loo for half an hour at a time, cleaning up then it would have another go and back to square one!

What has worked for me and transformed my life, is trans anal irrigation. I use it every morning after breakfast and that is me then free from problems for the rest of the day. It flushes it out so there is no more until the next morning. This was initially suggested by the colorectal surgeons but it took me a year to get an appointment. The first one was by phone when a junior doctor told me if I had leakage I had to try loperamide. I told her I was not taking a drug that reduces motility when dysmotility was part of the problem. I honestly don’t think she had a clue about the specific problem and didn’t listen to me. Eventually a more experienced member of the team arranged pressure studies, confirming the internal sphincter was affected and suggested irrigation. I use the Coloplast system. I had a training session with a nurse at the hospital but now just get supplies sent by Coloplast with a prescription from my GP.

I hope this helps, and good luck. You need a gi person who knows about the specific problems posed by scleroderma.

[Badflower]

thanks everyone. I agree with you Old Ted with the fact that the bowels are not taken very seriously. I’ve been to the Scleroderma clinic twice (at Royal Free). For the two years I have been they paid no attention to my plea that bowels were making my life a misery. However my pulmonary hypertension team did care and referred me to the colorectal surgeon. I waited many months to see him but spent 5 minutes in his office. He told me my problems caused by scleroderma (obviously I knew that) and the only thing he could do was a stoma. He just told me to keep taking Imodium. No examination or scan arranged. I am now awaiting for a referral to gastroenterologist thanks to my pulmonary hypertension team. I don’t know what the answer is. At least my next referral is with a scleroderma expert according to what I have read xx

[OldTed60 in reply to Badflower]

It’s shockingly bad where I live in Scotland too. I did travel to Royal Free last year to get my SSc formally diagnosed privately in order to keep getting Iloprost here for my Raynaud’s. I was diagnosed unequivocally and the prof explained that severe GI involvement was a hallmark of my rare SSc antibody. More recently he’s communicated with my rheumatologist to say there are no meaningful drug treatments for scleroderma gut and if severe enough then stoma would be needed and would hopefully improve my quality of life.

My GI involvement started years before skin or other apart from Raynauds so I’ve seen various gastros who have diagnosed GERD, chronic constipation (IBSc) and then discharged me. Finally a colorectal surgeon spoke to me at length on phone in 2020 and blamed scleroderma which he helpfully explained - suggested I try high fibre. This was a disaster and I almost suffered perforated bowel due to blockages despite taking various prescription laxatives. I was sent a peristeen irrigation system with no digital rectal exam or training and passed out from the pain - which was the blockage caused by all the fibre building up I believe. It was an appalled Coloplast nurse I spoke to afterwards who whistle blew on my behalf.

I then got seen for a trans anal exam and ultrasound which showed the obvious - prolapses, nerve and muscle damage etc. Then I had a colonic transit motility test and this showed severe dysmotility mainly affecting the lower part of my colon and rectum and both sphincters. Later I had a proctogram confirming the ultrasound results. So I was trained in and used the irrigation system someone else here has described daily for 3 years but I still needed laxatives and only got variable results and my sodium got low so I often fainted from diarrhoea when out.

Finally I saw the lead colorectal consultant in March of this year and she urged me to have a stoma and I agreed. Although far from perfect things are much better with it than before - to the extent that I regret the 4 years of faffing around being made to trial prucalopride twice despite allergic reaction first time. I am annoyed about having to try out all these “conservative” approaches first as it’s all but destroyed my social and work life as I became too anxious about incontinence or faints to travel or go out much.

I can’t find a gastro or colorectal consultant here in Scotland who have any awareness of or interest in scleroderma. If we don’t have cancer or IBD we are just put on the high shelf, too rare to be of interest. I do wish SRUK and Royal Free would be more proactive about the impact of GI involvement and research systemic treatments that can stop or slow it from progressing - same as already happens with lung, heart, skin etc. I see the colorectal surgeon (had to fight for this again too - apparently only bowel cancer patients with stoma get followed up?!) next month and will explain to her how distressing it is to have no GI drs who understand or have any interest in this disease xx

[OldTed60 in reply to Badflower]

ps I was actually trialled by my neurologist (with support of my rheumatologist) on IViG for autoimmune GI dysmotility/ AGID two years ago as all this apparently sits under neuro gastro. Sadly I had a severe (but extremely rare) reaction to it after the second round so couldn’t keep trying it as too dangerous for me. But it would be well worth your asking about for yourself as American trials have shown it works if caught early enough: consultqd.clevelandclinic.o...

[positivedaybyday]

Hi,

I had immense issues with my bowels at one stage. I changed from semi skinned milk to full cream & it sorted itself out.nprior to this Ihad to wear incontinent pads when out & about.

Something so simple changed my life.

I hope something so simple can give you some relief!

Xxx

[Badflower in reply to positivedaybyday]

Thank you.

[keir01]

I'm in the same situation as you I think. I guess I've stumbled upon my own way of managing through using a combination of what others have said. I take loperamide at bedtime so I don't have to go during the nightI make myself go in the morning by drinking a pint of water and a couple of strong espressos. Moving around and stretching seems to help. Once I've gone, can take 30 mins to actually feel finished, I use irrigation system prescribed by continence team to make sure I'm clean. Also had a bidet type toilet seat fitted which help get myself clean.

If I'm going out that day then I load up on loperamide. I've just been referred to Salfords scleroderma team and had initial appointment with gastro consultant. He seemed very good and aware of issues. Waiting for follow up tests etc. Will let you know how i get on. Also take codeine at night if joint and muscles etc painful. All the best

[Badflower in reply to keir01]

I must admit I’ve thought about a bidet type toilet although a relative who has one told me very expensive.

[keir01 in reply to Badflower]

Mines basically just a toilet seat that sits on the original toilet. About £100. Tried to post link. Saves on having to shower multiple times a dayToilet Seats Bidet with Non Electric Self Cleaning Dual Nozzles Separated Rear & Feminine Cleaning Natural Water Spray, Soft Closed Toilet Seat Combined Toilet Bidet,Easy DIY Installation (D shape) amzn.eu/d/1EDfG1e

[Badflower in reply to keir01]

I’ll definitely look into that. Thanks

[Lyndabickley]

Hi

I have had faecal incontinence for 20 years as a result of scleroderma, and failure of my internal anal sphincter. I have a routine where I get up at least 2 hours before leaving the house and eat and drink to stimulate my bowels. After a bowel movement I use a qufora wash out system which is quick and easy , to ensure my bowel is empty. I may have to use this several times a day. I also use Renew inserts following a wash out and when I feel as if my bowel is empty. These are easy to insert ( even with severe hand contractures and digital ulceration ) and stop leakage of mucus etc. I have also used Peristeen washouts which takes longer but clears more of the bowel. Neither system is perfect. I carry an emergency pack with qufora which is not too bulky and can use it if required in a disability public toilet. I am now considering a colostomy (I’m 75 now and worry that if I ever need a care home the staff will not understand in the way they would a colostomy.) There are 2 options. My preference would be an end colostomy where the lower bowel and rectum is removed and the anus closed!! However this is a 3 hour operation and as, like you, I have lung fibrosis causing pulmonary hypertension the risk is great so I may need a smaller op where the lower bowel is left. This leaves a double stoma and potential leakage from the anus. As I have a dysfunctional internal sphincter I am unsure about this. I have had a neuro-sacral stimulator for 12 years but it no longer helps and is a problem as I cannot have an MRI which my Pulmonary Hypertension Specialist would like for my heart so either way I will have that removed. Hope this helps. Best of luck managing your problem.

[Badflower in reply to Lyndabickley]

Thank you for the information. I’m clearly not alone with my problems! Did the consultant provide your prescription or through GP ?

[Lyndabickley in reply to Badflower]

I saw the community continence nurse who advised me about the washout systems and arranged the prescriptions for them. The GP now arranged them through my regular prescription.

[OldTed60 in reply to Lyndabickley]

Hi there. Having had a loop colostomy 4-5 months ago I’m happy to be messaged if you want to know more. For what it’s worth my consultant surgeon explained that loop takes longer and is the most complex operation to perform surgically compared to end. I was away for over 5 hours my husband said.

Loop is not a smaller op as you seem to think and it’s really only useful if a person wants it reversed at a later stage. I don’t and I regret her decision now for exactly the reasons you mention. I love my stoma but hate the ongoing anal discharge and the pain (bearing down cramps which I didn’t have previously) it generates. I have to use enema and still use smaller amounts of water with Peristeen or Qufora twice a week and the result is much messier and more painful, also coming up out of my stoma into the bag. I have arranged to see her again next month to discuss possible reforming of stoma with proctocolectomy (removal of rectum and stitching up of anus - otherwise known as Barbie/ Ken butt!). But I am extra worried now because I’m newly on Rituximab. If she agrees then I’ll willingly forgo my next round and stop my mycophenolate for as long as it takes but I would need a firm date so my rheumatologist and I can plan accordingly. Last time I saw her in clinic in March she failed to grasp that I have SSc or that I’m so heavily immunesuppressed.

I don’t have pulmonary hypertension or ILD so far so this aspect isn’t a problem for me. But it’s still more major surgery with a long recovery period due to the location and all the stitches. I’m quite upset about this because I recall asking her in March if I could just have the whole lot taken away in one go please. I think she was thinking if it didn’t work then I’d want it reversed in favour of ileostomy but she also explained that this carries more risks for me than colostomy so I don’t. Instead I take Linaclotide to offset the lack of fibre in my diet (severe gastroparesis). So I do hope this personal experience helps you with your decision.

[Lyndabickley in reply to OldTed60]

Hi

Thanks for your feedback. I’m puzzled. As a nurse I have ( years ago) nursed people with loop colostomies and recently a friend had one. They were done to rest the bowel after infection, injury or surgery and restored later. They were much less invasive than end colostomy. My colorectal surgeon reckoned it would take about an hour, much less than the end colostomy, which would take 3 hours. At present I lack control because of a dysfunctional internal anal sphincter. I would prefer the end colostomy as I would not want it reversed. He did warn me (and I checked online) that there would be leakage of mucus, as of course the distal bowel will continue to produce this, but also that there can be overflow from the main stoma. It seems to me I would not be much better off as I would have to manage the stoma and the leakage. The problem for me is that I have significant lung fibrosis and pulmonary hypertension which puts me at risk from both surgical and anaesthetic complications!! My bowel itself is healthy but the lack of control significantly limits my activities and although I manage it for the most part, except if I have diarrhoea which is a nightmare! It’s extremely embarrassing when it goes wrong! I’m not sure why you were so long ad now have pain and cramps. Perhaps you have other problems with your bowel? I note that you have gastroparesis. Anyway I do hope you get the surgery you need as I see from previous posts that you have a lot to put up with.

[OldTed60 in reply to Lyndabickley]

I was thinking more about this too after I replied. A pal with diffuse SSc was visiting this afternoon and we were discussing as she has similar GI problems to mine and so far no heart or lung issues although has some worrying symptoms now. She was told by a gastro that she would inevitably need a stoma. Like you she’s a former nurse so I was able to speak to her very frankly about all of this and my new post stoma cramping pain. We both initially felt same bewilderment as you because we were all assuming that an end colostomy always necessitates proctocolectomy (ie Barbie/Ken butt). I’m sure my surgeon meant that, if just performing keyhole surgery a loop is more complex to create than an end - which makes sense. She didn’t refer to removal of part of colon or stitching up anus because this is not inevitable with an end stoma unless there’s cancer or irreversible ulceration in the rectum or anus. . Other way round and yes a proctocolectomy always necessitates an end stoma of course.

I asked if she could just remove my entire large bowel and she replied unfortunately it not as simple as this and if it were and she was just speaking surgically, then yes maybe. But as a consultant/ dr she had to bear in mind my very complex history.

I have exactly same issues as yours ie damaged (by scleroderma related nerve and muscle damage) recto- sigmoid down to anus - with a large rectocele thrown in on top. So I realise now that I would far prefer an end stoma plus a Barbie butt. But she wasn’t sure whether I’d actually end up needimg an illeostomy if the colostomy didn’t work - in which case she thought I might want the colostomy reversed or re-formed rather than having to deal with two stomas.

The problem with having a stoma with a rectal stump, whether end or loop, is that as you know we can often have nasty mucous discharge. For me (and some others ) this causes painful spasms and cramps like a bearing down pain in our gut. It’s horrid and mitigates the benefit of having a stoma for me and many others with who still have their rectal stumps - whether ileostomy or colostomy, loop or end.

My actual surgery went very well I was told but it most definitely took far longer than an hour. I’ve no idea why - just that it was quite long as they explained that it would be. She was robotically assisted so maybe this slowed things down?! Or perhaps it was due to my throat being so dry from Sjogren’s or because of my allergy to dissolvable stitches? She did speak during ward round next day about the fact she’d has a lot to clear/ clean up and says that I’d need to keep using persisteen and watch out for blockages due to my slow transit. It’s not poo that comes out of the loop it’s mucous which is completely different to anything I’ve experienced before and pretty disgusting and sore. I fluctuate between constipation and diarrhoea now but latter mostly due to still needing daily laxatives. She felt this was a first step as usually slow transit colon requires illeostomy not colonoscopy but in my case very high output of ileostomy might be too dangerous she thought.

I will see what she says in 5 weeks time at the follow up I’ve requested and post an update.

[OldTed60 in reply to Lyndabickley]

Ps I just checked on a colostomy group fo I use for myself and I was correct - an end colostomy doesn’t mean we would get a Proctocolectomy. And it’s the proctocolectomy that’s would add to the length of time you’d have to be under general, not the end stoma. Here’s one of several replies confirming:

“My colostomy was due to MS and a loop colostomy was first done 5 years ago today. After 2 years it retracted and poo was going both to my bag and my bum. A year after that is was changed to an end colostomy without a Barbie butt. So I've still got a bum hole and still have to remove mucus. I think sometimes they opt for a loop just in case you can't cope with the stoma”

I hope this is helpful to you for decision making. Also my husband was a senior nurse in a care home for many years and has always told me that they never came across peristeen whereas were quite familiar with stomas. So I agree and relate to your reasoning xx

[Lyndabickley in reply to OldTed60]

Thanks. I certainly don’t need a proctocolectomy as that involves removal of the entire colon requiring an iliostomy, but do not want to retain the distal bowel as I would still have leakage and that’s exactly what I want to stop. If that’s possible I may as well carry on as I am. I’m still awaiting further feedback from my colorectal consultant.

[OldTed60 in reply to Lyndabickley]

I'm afraid that, without a proctocolectomy (which really doesn't require an illestomy as you assume) , it won't be possible to completely avoid leakage - even with an end colostomy - because this still leaves a rectal stump with mucous production still occurring to some extent or other. However some people produce more rectal mucous than others and it's usually nothing a discrete sanitary towel won't sort. The problem with any colostomy is that it tends to be smellier than ileostomy and in my case, the mucous causes cramping that lasts for days if I don't use enemas and peristeen several times a week. A loop is definitely more complicated to perform surgically than an end because it is made to be reversible if required, whereas an end is permanent so is simpler to create - just think of this like needlework/ crafting. If it wasn't for the pulmonary hypertension I'm guessing you would probably be advised to have a loop to make sure it's better than what you have now as you may hate it and wish to reverse it. Both types are usually performed under laparoscopy but are still classed as major surgery. You could phone Colostomy UK to have all this information confirmed - they are very helpful and operate a 24 hour volunteer (all have stomas) helpline 7 days a week. I think this would be a good idea because you seem to have picked up some inaccurate information along the way - easy to do I know - but this matters a lot where your decision making about your quality of life and future are concerned: 0800 328 4257

[Lyndabickley in reply to OldTed60]

Thanks. I will try that number. I am going on the information my colorectal surgeon and anaesthetist gave me. The end colostomy they propose includes removal of the distal bowel but not the whole bowel and closer of the anus. They estimate a 3 hour op. Both say they will get me through the op but that the surgical and anaesthetic shock could leave me disabled (E.g. with a stroke) or with a 15% chance of death. There seem to be so many different understandings I am more confused than ever. The experiences you described sound worse than my current situation! Certainly not worth the risk. I am waiting for them to get back to me. Hope things can resolve for you. You are having a bad time. Scleroderma is such a nasty condition. There are so many other problems to deal with as well as bowels. Take care and thanks for all your help.

[OldTed60 in reply to Lyndabickley]

Thanks for explaining. So that’s a resection as well then rather than just an end colostomy. Two of the three people I’ve spoken to on the helpline said they had end colostomies with proctocolectomy from the start and one had a resection - all three due to rectal cancer. This is how I know that having a proctocolectomy doesn’t necessarily lead to ileostomy. I plan to ask the surgeon about proctocolectomy next month although I suspect I’m too high risk with this disease, on Mycophenolate and now also on Rituximab.

Despite the realities I’ve listed I’m still much happier with my stoma than I was previously. My weight has increased a little and I’m not as low in sodium now so less prone to fainting as I don’t need as nearly much laxative daily and I can go out for much longer without worrying about the incontinence. Strange as it may sound having a stoma is cleaner and I don’t have bag leaks or skin issues as many seem to. Nor do I yet have a parastomal hernia. So I’m not wanting to put anyone here off ostomies if you need one but it’s definitely a compromise rather than a perfect solution. And there are realities I wish I’d been warned about first.

[Lyndabickley in reply to OldTed60]

Yes. These discussions are really helpful. People with cancer really need to go through this surgery. My bowel, to my knowledge is healthy, apart from the internal sphincter so it’s more about lifestyle, but being able to live as full a life as possible is important.

[OldTed60 in reply to Lyndabickley]

Yes - although some with SSc, IBD etc also end up having emergency surgery for stomas too. From my understanding, chronic pseudo obstruction and other vagus nerve damage related GI problems relating to SSc, MS, Diabetes etc can sometimes become life threatening so it’s not just cancer. There are neuro muscular, fibrotic or vascular causes and these require different kind of expertise and awareness. But I fully agree that quality of life is as important as longevity when we’re older. Best of luck in wherever decision you reach xx