Scleroderma and Bowel Issues.

[Kaycee97]

Hi there.

I havent been formerly diagnosed with Scleroderma as all tests have drawn negative results.

I have medication for long term Raynauds,I have lansoprozole for acid and they dont seem how to diagnose my swallowing issues. I have developed little lumps on the joints of my toes (which the rhemumatologist wasnt bothered to see) and my toes swell when they feel like it.

For the past 3 months I have been suffering progressively with bowel issues to which the GP says is constipation. I am also suffering with my self diagnosis of Tenesmus . (Wanting to go to the toilet all the time but not passing stools only gas and water) . I am taking sachets of Movicol to apparently regularise again. My lifestyle hasnt changed nor has my diet yet this has started.

My question is has this happened to anyone else who has been diagnosed? I am not getting anywhere with the GPs and I was meant to have a telephone consult with my rheumatologist as he wants to discharge me. That didnt happen as I didnt answer my call quick enough and he rang off (4 rings seriously?)

Thank you

[Carp84]

I have been diagnosed with Scleroderma back in Nov 2019. I have Raynauds, Pulmonary Hypertension, Mild Lung Disease and I'm awaiting to see Gastroenterology specialist, as I have trouble with swallowing and also my bowel habits are very similar to yours. When you say all your tests are negative, is that your blood tests? I think that you need to push more at your doctors to get referral to Gastroenterology. Sorry not more helpful.

[Kaycee97 in reply to Carp84]

Yes blood tests were ok. Capilliaroscopy was ok too. I was seeing Gasto dept at hospital but they discharged me as they didnt think I warranted their medical services.

[Gmargs]

I agree with Carp84, even if your current doctors and tests done so far don’t indicate that you have Scleroderma, more investigations are required to address your bowel issues. And a Gastroenterologist is the best specialist for that, or at least to rule out any Scleroderma related bowel issues.

If your current GP isn’t happy to refer you a Gastroenterologist (even though they are obliged to investigate any of your concerns) I would advise you to see another GP for a second opinion and maybe ask about seeing a new Rheumatologist.

It may not be clear yet what is causing your issues. Note some gastrointestinal tests can be invasive.

[Kaycee97 in reply to Gmargs]

I am on my 2nd rheumatologist as the first one said I had old age arthritis! I was discharged from Gastro unit last April as they said my oesophagul endoscopydidnt find a swallowing issue. Thanks for your reply.

[beesmum]

Hello Kaycee97, so sorry to hear of your problems, especially as you are not getting the help and support you should have from the medical professionals. I'm borderline Limited Scleroderma, diagnosed early 2016. I had dreadful bowel issues from June 2016 (attributed to a rare cancer I had, Thymoma, cancer of the Thymus). You will have to push your GP very hard to either refer you to Gastroenterology on the NHS or Privately. It could be a long haul. It took over 5yrs for me to get help, I know that will be depressing, it does seem to be something of a lottery depending on where you live as to whether you are taken seriously and are ignored (as I was) or get positive help fairly quickly. Bowels are so important to our wellbeing bot physically and mentally, yet are so quickly dismissed by medics. I was forced to pay for private Gastroenterologists and Colorectal surgeons.

Ask for tests: 1)Transit Study to check how long it takes for waste to pass through your Colon, 2) Anorectal Physiology tests rectum responses etc, 3) and another I can't remember the name of, "stuff" is placed in your rectum & filmed as you pass it out.

Sorry to be so personal, you will have to fight tooth & nail to get help. I wish you all th very best.

[Intimeslikethese in reply to beesmum]

is it called a barium enema?

[beesmum in reply to Intimeslikethese]

I think it's a Defecating Proctogram, though I may have mis-spelt it!

[Kaycee97 in reply to beesmum]

Thank you for your reply,sorry to hear of your problems. The GP has said if I am no better bowel wise to go back in a few weeks! I have seen 2 different gps so far as sadly our practice seems to have GPs on rotation so never the same one.

[LuckyLucy007]

Hello Kaycee97, I'm sorry to hear that. I was diagnosed with limited scleroderma in 2017 and am on various medications. I have also experienced bowel problems exactly as you described, but that came with mega bloating as well. My rheumatologist diagnosed it as a leaky gut, and prescribed a course of antibiotics which cleared it up. Apparently it's a fairly common issue! I hope you manage to get the help and support that you need. I would keep on at them until they start to listen and take you seriously. All the best.

[Kaycee97 in reply to LuckyLucy007]

Thank you for your reply. Its difficult to get someone to take note isnt it,? I am joining up all the dots but its seems beyond the medical profession to do that.

[GGhere]

Sorry you're having such a distressing time. All the replies here, I can second everything they say. I had 2-3 years of going to the GP who treated me as if I was a hypochondriac. Eventually, I think in desperation to shut me up, he referred me to the hospital. It then took another year of tests of every sort including a lymph node biopsy, to get a diagnosis of systemic sclerosis, scleroderma, Raynaud's and Sjogrens syndrome - the lot. Keep plugging away until you get some satisfaction. My GP still doesn't seem to understand the distressing symptoms and effects of this flipping disease - he just tells me that he doesn't know anything about it. I'd love to tell him to Google it but I don't dare. Good luck Kaycee97 we all empathise with you.

[Sashmo_L in reply to GGhere]

Tell him to google. Dare you! But joking apart it’s pretty shocking that your doctor is not prepared to educate themselves.

[Kaycee97 in reply to GGhere]

Thank you for your support. The rheumatologist did mention Sjogrens as a possibility but I had a scan of my thyroid and as nothing was found it "cant be that". I do feel I am being made to seem like a hypochondriac even though I rarely go to the doctors.

[stiff19 in reply to Kaycee97]

don't let them make you feel like that, easier said than done , I questioned myself for years doubting myself but all it dod was cause me harm and allow progression with their continued neglect to this day . you know yourself and it is every doctors job to try and help and if they don't have the answers why don't they send you to specialists who might. keep pushing , I am still fighting but im not the crazy one just because they don't have the answers and if they listened they might have more of an idea. im aiming to go private for at least one consult as my life is being ruined where I know it can be helped if for the right specialist knowledge. it shouldn't be this way that only get help if you can afford to pay but it is, ive been struggling and saving and now years later will be able to have one shot at private. I wish you all the best and strength you need to carry on searching for the help you need

[Jaq1971]

you need to keep pushing it’s so hard I was told at one point all my bowel issues were fictional in my head clearly they were not I ended up making a complaint to pals which led to a new pair of eyes on me I now have 5 consultants and have been diagnosed with cine sclerosis scleroderma I have none of the skin issues I do have raynaulds and in the past six months my swallow has been affected I take blackcurrant fortisips to help on days I can’t swallow I’ve lost 3 stone I also have bladder issues joint pains headaches and generally feel crap I have gerd so take meds for that I have started nifedipine and Hydoxycloroquine also ramipril for hypertension all I can say with your digestion is how I deal with the pain which I get mainly in my lower back sides and centre of tummy is drink lots of fluids weak juice if you can’t tolerate water also I have an electric back massager from Amazon and it really helps to move things along I don’t take lots of laxatives as I worry this will make my system even slower but when I absolutely have to I find dulcolate work best for me . It’s hard because everyone’s symptoms vary I also find getting in the shower sitting down and allowing the water to hit my back helps , I do hope you get answers soon it’s so very hard when you are in constant pain and nobody seems to be listening. I’m going to see professor Denton in July as my own rhemotologist and gastroenterologist have said they don’t know what else they can do to help me and he is the leading specialist in this field please don’t give up keep pushing for answers xx

[Kaycee97]

Thank you for your reply, I am sorry to hear of your struggles also. I do wonder if I am making more out of my symptoms than I should and linking everything to a possible Ssc diagnosis. I dont really have any skin issues which is one of the reasons the rheumatologist says its not Ssc. But as I said to him it presents itself in many forms. Hit.Head.Brick.Wall !!

He did prescribe Sildenefil as the Nifidipeine and Amlodipine didnt suit me. Its been the best for side effects well if I halve all the tablets and make sure I dont eat for 2 hours before or after! It didnt stop the attacks but since I stopped I have noticed I have had more so obviously did kind of work! I stopped taking those to determine if they were causing my bowel issues as it started around the same time. But it doesnt appear to be that.

I will give the required time and then pester the GP again. she did offer to send me to Gastro for an x-ray but the head of the practice said not to do it as its "just constipation" when she sought advice. Its an uphill battle .