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#1 marsha

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Posted 05 October 2013 - 07:03 AM

Good Morning All,

 

I have been having some issues for about a year or so but lately they are really getting bothersome.  I seem to have some gastro issues.  I never have solid movements, and a lot of the time I have a "gotta go" urge.

 

I told my rheumy and he suggested a gastro doctor but as always I just never followed up.  I am not sure why that is.  Well over the last few weeks the urges have gotten worse and I have even had an accident last night,  its like I cannot hold it.  

 

The question is this. How common are issues with the belly?  Is it a hand in hand thing?  I've done some research but things seem to be so vague.

 

Also I have been recently diagnosed with Sjogrens, which explains my extreme thirst. The past two days the exhaustion levels are beyond imagination.  I can barely walk across the floor and my Raynauds is off the charts. 75 degree days and my hands are blue. 

 

Tell me this is normal for us dealing with this dumb disease. I see the sclero doctor at the end of this month and also my rheumy. Thanks as always for letting me vent. 

 

Marsha



#2 judyt

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Posted 05 October 2013 - 03:27 PM

Hi Marsha,

 

I am sorry to say that I think I can answer at least some of your queries.   Pleased to be able to do it but sorry you have had to ask these things.

 

The bowel isssues, particularly regarding incontinence, are something I have first-hand experience with, and I know that I am not alone here.   First of all I would suggest that probably the person you need to consult is a Colo-rectal specialist.   If you could find a lady it might make things easier for you but I have never found one in this part of the world.

 

The advice I have had that has been most helpful has come within the last about 5 years.   Like you I would have never had a solid movement and the remedy to that is to have a bulking agent added to my daily regime.   It makes so much difference for me that I am afraid to miss it now.

 

What I know about the effects of Sclero is that for those of us with internal involvement it can affect the whole digestive system from the first swallow to the end issue.   For me, and I don't know about you, I have had a restriction in my Oesophagus and that has been repaired.   I have an Hiatus Hernia which means I get reflux which is under control.   I have had stomach issues resulting in violent cholic pains and sudden almost unexpected vomiting.   My small intestine has shown abnormalities in CT scans but that is too tricky to investigate further they tell me.   Next comes the large intestine which leads to the rectum and that is where the main problem lies.   In my case (I can't say for you but you need to find out) the rectum has atrophied (stiffened) and the sphincters don't work any more.   So now I have no storage capacity and then when I need to hold on nothing happens, exept the worst :crying: .

 

Over the years I have had 3 or 4 surgeries to try to help my situation but nothing does really (except the bulking agent) and in 2012, after asking again about some help I was given Sacral Nerve Stimulation implant.   I could explain what that does, but you could look it up and get a better explanation than mine.   I probably have to admit that the SNS does help a little.   Some people here say it is a wonderful help but for me I think it was too little too late.   If my sclero had been recognised when I first had this problem in my 40's then maybe things would be better for me now.   The thing is that I don't think anybody here knew what Scleroderma was in those days anyway, let alone what to do about it.

 

Get yourself motivated to find the right person to consult and hope that it is not too late.

 

As far as Sjogren's is concerned, that started for me in that same decade, having had Raynaud's for 20 years already and gastro issues for 10 years before that, so I know exactly what you mean about the dry mouth and fatigue, and as for Raynaud's in the summer !!!!!!!!!

 

Sorry I couldn't give you more positive news but I hope you will be able to get some help.

 

Best wishes

Judyt



#3 marsha

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Posted 05 October 2013 - 04:12 PM

Thank you so much Judyt,

I appreciate all the information.  I am going to pull my big girl pants up and find someone to see . I will start my search on Monday. 

 

Hopefully I can find someone and get in swiftly, and hopefully get some help for this. Its really starting to affect my life. 

 

Take care

Marsha



#4 miocean

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Posted 05 October 2013 - 04:40 PM

Hi Marsha,

 

I sadly welcome you to the Bathrooms Are Our Best Friends Club!  :(

 

I have suffered from bowel issues for 40 years now. The first diagnosis was anxiety related GI disorder. When I have panic attacks they go to my intestines, then I have to immediately go to the bathroom, but there may not be a bathroom, then I panic more and then the cycle continues. 

 

20 years ago I started seeing a gastroenterologist. I had blood tests, stool tests, medicine, fiber supplements, gastric emptying study, endoscopy, colonoscopies and really no relief. I was diagnosed with Irritable Bowel Syndrome.  I do have damage to my esophagus and some benign polyps in my colon. I accepted it as part of my life, endured being tied to the bathroom in the morning, and sometimes embarrassment. With the diagnosis of scleroderma I accepted it as part of that. With the addition of medicine that causes diarrhea I accepted it as part of that. When I urinated, there would be a piece of stool in the toilet that I was unaware of passing. Sometimes I would find a small piece of stool a foot or more away from the toilet (how did it get there?)

 

I started seeing a Functional Medicine doctor in May and begin an elimination diet to see what foods bother me. Although I felt better, the constant bowel movements never ended. They actually became worse. Most mornings I would have 7 bowel movements in the first hour I was awake, and continue throughout the day. I was eating healthier food, fresh, organic vegetables, keeping a food diary, eliminating gluten, dairy, soy, corn, and not really noticing any difference when I reintroduced them because I never really had improvement with my bowel issues when I didn't eat them. I do feel better and have lost 15 lbs. but wasn't getting a solution to my constant GI distress.

 

One weekend I decided to eat whatever I wanted. No salads, no veggies, no fruits, and oddly, I did better. So I discovered MY body can't handle all the raw vegetables. Then I noticed that when I travel I do better. When I travel I always used bottled water and although I started drinking bottled water years ago at home I used tap water for tea and cooking. I started using bottled water for everything this week and there was a big improvement in 3 days!!

 

I just had another gastric emptying study but do not know the results yet and due to the lung transplant evaluation had to see a new GI doctor for a 24 hour PH monitoring test. The new doctor specializes in celiac disease and women's digestive disorders and was assigned to me via the transplant center. She asked me a lot of questions and started talking about scleroderma with a great deal of knowledge. I asked her how she knew so much about it and she said before she decided to be a gastroenterologist she was very interested in rheumatology and wrote a paper on collagen vascular diseases effects on the GI system. I think I may have found a new GI doctor! She asked if I had ever had a breath test. I shook my head no and she explained that there can be an overgrowth of bacteria in the small intestine that can cause my issues so next week I am having a hydrogen breath test done. She is also investigating the PH monitoring study I need done for the transplant center to make sure she does it the way they want it. This is done via endoscopy, and she will do a biopsy for celiac disease at the same time. Then I will have the colonoscopy and perhaps a better management of my issues can occur.

 

This long rambling has a purpose (why is it I can never write short posts?) First, seek medical help with your issues via your current doctors and a gastroenterologist who knows something about scleroderma. Second, it might help to keep a journal of what you eat and how it affects your system. If you are eating a lot of fresh fruit and vegetables, try eliminating them for a couple of days as they can be hard for some people to digest. The elimination thing is all hit or miss experimenting and it may take a while for it to sink in that something like too much of one food is a problem.

 

I am sorry to hear about the Sjogrens on top of everything else. Was the diagnosis done via blood tests or symptoms? All the diarrhea can dehydrate you and make you thirsty as well. Keep very hydrated. You know the drill with the Raynaud's, keep your core warm and have gloves everywhere. I really feel for you having to go through all of this. 

 

Hang in there,

 

miocean


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#5 Shelley Ensz

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Posted 05 October 2013 - 07:19 PM

Hi Marsha,

 

I am sorry you are experiencing new symptoms. I really can't add anything to Judy and Miocean's posts, exccept to say that scleroderma can and often does affect the entire gastrointestinal tract, from stem to stern. The issues can vary from comparatively mild to downright lethal, depending on what part is affected, and how drastically. See Overview of Gastrointestinal Involvement for the big picture.

 

It's great to begin working with a gastroenterologist, preferably one that your scleroderma expert recommends as not all are familiar with scleroderma (of course). 

 

:emoticons-group-hug:


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Shelley Ensz
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#6 Joelf

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Posted 05 October 2013 - 10:28 PM

Hi Marsha,

 

I'm so sorry to hear that you're suffering with gastro issues as well as Sjogren's and Raynaud's.

 

Like Shelley, I can't really add anything to Judy's and Miocean's excellent advice; thankfully, I don't really suffer with gastro problems myself, so can't give you any first hand help. However, I do have a good friend who has had similar symptoms and to a large extent, she's managed to alleviate a lot of the discomfort and urgency by being very careful with her diet, as Miocean has advised.

 

I would echo the other members' advice that you do consult a gastroenterologist as soon as is possible and I do hope that he/she can give you the help and treatment to improve things for you.

 

Kind regards,


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#7 Amanda Thorpe

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Posted 07 October 2013 - 09:04 AM

Hello Marsha

 

Good to hear from you again but not good what's happening missy! Gastrointestinal involvement is so, so common in systemic scleroderma and many people on the forums have problems with controlling things until they're in the safety of a toilet.

 

Now, I hope you appreciate this as I am going to make a hypocrite of myself for you...ALWAYS follow up appointments! Had I done so in February 2009 I might not have had the shock of finding myself in serious heart failure 14 months later.

 

Medication, diet and medical intervention can help and sometimes alleviate symptoms altogether but you have to see your primary care doctor, have appointments made to see the gastric doctor and GO! Here?

 

Take care and keep posting.


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#8 marsha

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Posted 07 October 2013 - 12:13 PM

Thanks everyone,

Amanda, I am on the look out of a good belly doctor but I am sure finding one with Sclero knowledge is probably going to be very difficult! I will trudge on and get it done. 

 

I guess I am a bit scared to know what is going on, but there is no ignoring it anymore. I HATE this disease!! I'll keep you all posted on my findings.

 

Marsha



#9 judyt

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Posted 07 October 2013 - 02:36 PM

Hi Marsha,

 

In spite of some thoughts and comments I have made about information on the upside down side of the world where I live, I have increasingly found that Specialists DO know something about this disorder.   Practitioners who are in their mid-forties or so will usually say that they learned about Sclero in Med. School.   Older ones not so reliably but I have gone for a second appointment and been told that 'he' has read up about it - and so they should!!!

 

When I was desperate in 2011 I just googled Colo-Rectal Surgeons and was lucky enough to find one whose main interest is Incontinence.   In fact his Nurse phoned me just yesterday checking up on me!!   That is 2 years after I first saw him.

 

I have not found Gastro Specialists much help in the nether regions.  Here they seem to be more interested higher up.   The man who dealt with my stomach issues sent me for an MRI and some Manometry (same as for the Oesophagus but at the other end) then just straight out wrote me off - told me I wouldn't qualify for an SNS, I was too far gone :angry:. He had been great up until then.  The next one I tried was not much better although he didn't get much of a chance - the very next day I was in the Emergency Room lining up for an Emergency Laparotomy because of a blocked bowel.  He didn't know that was what was going on, just shrugged his shoulders and said see you in 6 months and in the meantime take these antibiotics you have diarrhoea.

 

From what you have said in your post it would seem to me that you need somebody who deals with the Rectum and Bladder and can do something about it.   The Colo-Rectal Surgeon sent me to the right kind of Physiotherapist and she was great.    She has her practice in conjunction with a  Birthing Centre so works with women all the time.

 

Anyway, don't depend on my opinion, I know what is going on with me, and I know what I think I need to do about it but apart from that my $5 First Aid Certificate seems to have got lost in the mail so you need to think hard about what you think might be happening with you and then set out to fin the right person to consult.

 

Amanda has Bladder issues and she might chime in and give her view.

 

Best Wishes

Judyt



#10 Delk

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Posted 10 October 2013 - 12:44 PM

Hi--

 

Sometimes it's NOT scleroderma.  A cautionary tale that hopefully has nothing to do with your situation:  Last Spring I was having increasing GI issues including some fecal incontinence, as well as bloating and rotating diahrea and constipation.  I assumed it was Sclero related and didn't do much about it expect adapt.  Turns out it was ovarian cancer caught on a routine sonogram.  After surgery and chemo, a year later I am cancer free so far.  The good news is the chemo might have kept my lungs stable, who knows.  Anyway, my point is,  if it's applicable, consider a conversation with appropriate doctors about non-sclero causes of symptoms.



#11 Shelley Ensz

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Posted 10 October 2013 - 08:35 PM

Hi Delk,

 

Welcome to Sclero Forums.  I'm glad you've joined us, but sorry that you have scleroderma and ovarian cancer.

 

You are so incredibly spot on about not assuming anything is caused by scleroderma.  It is too easy to just lay everything at its feet without carefully going through the diagnostic process with each new symptom or change in symptoms. It is a tedious process, but it can be life saving to make sure nothing is just written off to scleroderma without the same, full process that anyone else (without scleroderma) would go through. Even with scleroderma, we are still vulnerable, perhaps even more so, to every other ailment under the sun.

 

I think we should all begin a chanting, NEVER assume any of our symptoms are due to scleroderma and don't let our doctors shrug them off on scleroderma without the same thorough evaluation that anyone else would get.  Thank you for reminding us of this; and please remember that it is simply impossible to do so too many times.

 

:emoticons-group-hug:


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The most important thing in the world to know about scleroderma is sclero.org.

#12 Joelf

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Posted 10 October 2013 - 09:48 PM

Hi Delk,

 

Welcome to these forums!

 

I'm sorry to hear that you have Scleroderma and ovarian cancer. Thanks very much for your excellent advice; it's certainly important to check every new symptom with your doctor or consultant as it's so easy to assume, once diagnosed with Scleroderma, that every other symptom relates to it.

 

I'm glad that you've been free from cancer now for the past year and please do keep posting!

 

Kind regards,


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#13 Amanda Thorpe

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Posted 11 October 2013 - 01:13 AM

Hello Delk

 

Welcome to the forums and thank you so much for sharing your story, believe me , it will be quoted and referred to all over the forums! We do tend to think "there goes scleroderma!" when we get a new symptom AND when an existing one worsens, particularly in reference to bowel symptoms, it can be so many other things.

 

Take care and keep posting.


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#14 inkedup

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Posted 11 October 2013 - 04:10 AM

Hi Marsha.

 

I too have been suffering from gastro issues. I have additional complications (PBC, Hypothyroidism, Sjogrens, and am antibody positive for pernicious anemia). I have a small amount of incontinence, small, but highly upsetting, and I have now noticed that I am passing a small amount of dark blood. It does seem never ending, and its all got to the stage where I am considering reducing my hours at work, as I feel I can't look after myself in the way I need to (am now 45). I try to be upbeat, but I genuinely feel like an old lady, both in mind and body!  :emoticon-crying-kleenex:



#15 judyt

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Posted 11 October 2013 - 01:18 PM

Hi,

Dark blood!! See your GP lickety split.

 

Judyt



#16 Joelf

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Posted 12 October 2013 - 07:08 AM

Hi Inkedup,

 

I would reiterate Judy's advice; please do make an appointment and see your doctor as soon as possible.

 

I have no medical training and passing dark blood could be nothing to worry about, but you should definitely get it checked out sooner rather than later!

 

Kind regards,


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#17 Sweet

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Posted 12 October 2013 - 09:07 AM

Hi Marsha,

Sorry to hear of your issues. Gastro difficulties seem to be quite common, but of course it could be a whole other reason. I have the opposite as you. I can go weeks I kid you not...I happen to be in one of those modes right now. UNCOMFORTABLE. Anyway, just wanted to let you know you're not alone, but I do hope you seek out medical advice. 


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#18 Amanda Thorpe

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Posted 12 October 2013 - 02:20 PM

Hello Sweet

 

I have constipation also and it does seem that most people have the opposite issue! The longest I have gone is 10 days and that was bad enough, thankfully things are much improved these days I just have no idea why!

 

I assume that you have an issue with bloating? I ask because I am on a diet at present and have lost a lot of weight, recently buying jeans in a smaller size, but still have a bigger that I ought to have sized waist.

 

Thank you.


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#19 Shelley Ensz

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Posted 16 October 2013 - 06:33 PM

Hi Inkedup,

 

Have you seen your doctor yet regarding the blood in your stools?

 

I know how easy it is to shrug off every new symptom or worsening of things when we are dealing with chronic illness, but we really do need to make the effort to get it all checked out by our primary care doctor in a timely fashion whenever we get new, different, or worsening symptoms of any sort.

 

Please let us know what you find out. I am sending some extra warm hugs your way!

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 inkedup

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Posted 16 October 2013 - 10:46 PM

Hi,

 

I have a GP appointment in 2 weeks, and a Rheumatology one in 3 weeks, so hopefully will get some answers.

 

My brother has severe ulcerative colitis, so I'm hoping that I'm not getting this. Also my dad and great Auntie have had colo-rectal cancer. Hopefully it will just be polyps or something!