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Can No Longer Cope With Bowel Troubles.

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I was diagnosis with CREST about 10 years ago. I have all the symptoms except S of CREST but are copable, also many other symptoms that may or may not be related. I hold down a full time job & usually don't let my symptoms get the better of me.
However the past 12 months or more I have had increasing bowel problems that are wearing me down so much. I am in almost constant severe pain, lost 3 stone in weight, had just about every test imaginable that all show ok except I was shown to have gallstones. I eventually had my gallbladder removed 6 weeks ago. The surgeon was convinced all the other bowel problems I'd had was due to this, I wasn't convinced. My gallbladder was full of pus & I had a large stone blocking my bile duct when they opened me up. Some bllod & pus also leaked onto my liver causing severe pain afterwards. However I have recovered well from the surgery & thought that wuld be the end of my symptoms but it appears that I still have all the bowel symptoms apart from I no longer have the gallbladder attacks. I have tried every diet even a total exclusion diet. They seem to work for a while but at the moment if I eat anything I am in severe pain, so am just eating enough to get me by. I will list my symptoms as they are so varied:
Severe abdominal pain, sometimes above pubic bone, sometimes at waist sides, sometimes centre of ribs but usally are cramp like pains.
Diarrhea but not alays, I can have the pain without it.
Sickness or nausea.
Very pale yellow stools.
Sometimes orangy very loose oily diarhea.
Pain starts half an hour after eating, could almost set clock by it.
I am at the end of my tether with it, dr's have no answers, I have had to be rushed to hospital in pain several times. I am now convincing myself it is somethng sinister. I am on the verge of losing my jib due to the time I have had off & also because I have become violently ill while working.
Don't know where else to turn.
Anyone have similar symtoms or any ideas?
BTW my story which is a bit outdated now is in the ISN's book, Voices of Scleroderma Volume 1.

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Hi Deb,


I'm sorry to hear what you are going through and that gallbladder surgery didn't fix it. Have you had thorough testing for Celiac Disease, yet?

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


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

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Wow! I have no answers, Deb, but just wanted to say I am sorry for what you're going through. Do you see a scleroderma specialist? Has anyone given you anything just for the pain? Can they fire you for being sick?


I wish you the best! Please let us know what happens.




Mary in Texas

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Shirley: I have had camera's in just about every orifice several times. I had camera all way through my bowels to bottom of my stomach & they took biopsies but all was fine. I tried a gluten free diet & was fine but I have also had periods of being fine while eaten gluten.

You can't get fired for being sick but I am a manager & they can go through a fair process where I would end up losing my job, they have to be very careful though.

I have been on numerous pain killers. For the past 5 days no matter what pain killer I take thd pain is still there.

I do have a slight hiatus hernia & an inflammed stomach but I have had these for years for which I take losec 40mg, but these have never caused these type of pain & problems. I also suspect I have an ulcer I have had one before & am having additional symptoms to the ones I have mentioned but I suspect I have only recently got this as it hasn't shown on tests I've had.

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I just had to comment on your symptoms. Every once in awhile I get pain in center of abdomen, diarrhea after eating or feeling of need to. Also, I have had large yellow stools with oily droplets and bowels stick to the toilet. Sorry to be so graphic.


Anyway, the gastro guy said it is related to my malasorption problem which pops up and it could relate to the pancreatic problems. I ended up in the emergency room with severe pain , throwing up, bile backed up in the urine, and completely dehydrated for no reason. They could never find a problem even though my amaylase was high. Gastro later said it could have been pancreatitis which leads to a chronic type later on and can cause malasorption. Thought this might give you another view point. I have MCTD> Susie54

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Guest Sherrill



Have you considered lactose intolerance? It's suprisingly common, and although I wasn't tested for it I found I was much better when I stopped eating dairy foods! I have lactose free milk, and try and avoid most other sources of dairy food, which can be difficult sometimes, particularly when you have a craving for ice cream or cheese!


The other thing I find which helps is to avoid too many foods which are high in fiber e.g. peas, corn, and quite a number of vegetables and fruits unfortunately. If I am having diarrhea and/or nausea I back off these foods even more. When I am feeling better I can re-introduce some with caution.


The scleroderma can really mess up bowels badly! Like some people have bad diarrhea, while others have constipation, and some have both alternately, and often with pain. I have found my own solutions by trial and error, and even then it doesn't always work. When I go out I always have to take an OTC anti diarrhea med, or I know I will have problems!


Malabsorption is also common in scleroderma. Have a look at the Bowel Dysfunction page, you may find something there which helps.


I hope you can find out what is causing this as it's miserable!!


Warm hugs,

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Hi everyone,


I've been reading the forum for about two months and have found it very helpful. I decided to join when I saw dynamicdebz's post. I had the same symptoms as you. Severe pain shortly after I ate, vomiting and diarrhea. Before I was diagnosed with scleroderma I ended up in a hospital while on vacation. My symptoms were like a bowel obstruction. The short story is they operated and didn't find a thing. I was scoped up one side and down another as well. After my scleroderma diagnosis I found out that the disease can present itself as a pseudo bowel obstruction. What it turned out to be was a small bowel overgrowth. Since my bowels were not operating properly they concluded that my bowels were not pushing food through fast enough causing it to grow bad bacteria. This also caused malabsorption which caused me to lose 80 lbs over a short period of time.


An infectious disease doctor figured it out and put me on Cyprofloxacin and Metronnidazole. These antibiotics made it so I could eat again (although I do have an intolerance to milk) and I have been able to gain back about 40 lbs.


I've still got alot of other issues like my lungs, sore joints and fatigue. As hard as I tried to stay working, quiting turned out to be the best thing for me. By cutting out the stress and being able to rest when I need to has made most days tolerable.


I hope this helps.

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Welcome aboard Joel,

We need all the input of others that have gone through different things. It really does help when trying to explain things to your doctor or knowing ahead of time the products that work best for others. I hope you receive benefits and encouragement through all of us. Sheryl

Strength and Warmth,



Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Joel~

Welcome!! Fatigue, swelling, gastro problems and joint pain are my major annoyances. If you have an RX for relieving stress...please share LOL

Have a great weekend! Spring is finally here in NY YAY!!


CarriePan :fairy:

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