Author Topic: severe abdominal pain and weight loss  (Read 2441 times)

Okie

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severe abdominal pain and weight loss
« on: November 03, 2009, 09:02:15 AM »
Anyone know the common gastrointestinal Sjogrens problems? I was in the hospital with servere abdominal pain and lost allot of weight. Years ago I had my gall bladder and appendix removed. Also had hysterectomy. The pain I had was worse than all three combined.

~elizabeth~

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Re: severe abdominal pain and weight loss
« Reply #1 on: November 03, 2009, 09:59:18 AM »
I can only speak for myself,  but I've had really bad gastric problems on and off, which have coincided with flares of other symptoms and which I'm sure are related to the condition and/or autoimmune thyroid disease. It's varied from extreme, very painful constipation, with blood sometimes mixed in stools (for which I had endoscopy in my mid 20s; they gave up mid-examination as my bowel was too blocked for them to examine very far) to prolonged bouts of severe diarrhoea and weight loss. Also, several episodes of anaemia (low haemoglobin, low ferritin) which suggest either bleeding or poor absorption. I've had blood tests for various kinds of gastric auto-immune conditions, which were all negative. My GP did suggest sending me for another endoscopic examination, but I put it off as the lower abdominal problems haven't been too bad for a while.

More recently, I've had a lot of indigestion-type pain in the upper abdomen, and bad acid reflux which has just started in the last few days, something I've never really had before but which seems to affect quite a lot of people with SjS, from searching old posts on here.
« Last Edit: November 03, 2009, 10:19:15 AM by ~elizabeth~ »

Okie

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Re: severe abdominal pain and weight loss
« Reply #2 on: November 03, 2009, 10:29:23 AM »
While in the hospital they kept me off food and water for four days. Which of course caused my salivary glands to balloon. They also gave me fibercon. To my amazement the six months of diarrhea has stopped. They did a colonostomy, which I was nervous about because my mother in-law had a hole ripped in her colon when she had it done; which they said was due to scarring. The gastro had a solution for me concern. He used a pediatric scope, and the test had no complications. I'm still in pain but not at the level I was when I went in. I cannot expres how much pain I experienced. I'm new here so I appreciate your information. PS , my spouse has reflux and sleeps a little upright and that seems to help.

genko_b

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Re: severe abdominal pain and weight loss
« Reply #3 on: November 03, 2009, 10:32:42 AM »
I have both long-term acid reflux for which I take Protonix and long-term ulcerative colitis for which I take Lialda (a form of mesalamine). Both of those help a lot. My rheumatologist says they are both commonly associated with Sjogren's.

Did you mean a colonoscopy, or did you have a piece of your colon removed? Sorry you are having so much pain.

Genko

ohiolady

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Re: severe abdominal pain and weight loss
« Reply #4 on: November 03, 2009, 11:32:30 AM »
I have abdominal pain since my Sjogrens diagnosis.  I believe it mostly comes from the acid reflux I struggle with.  I take daily medicine for reflux called Kapidex.  I do all the other things recommended for reflux.  Sleeping upright, avoiding a lot of foods ect.  It is very chronic for me and really takes away from my quality of life.  When it is bad, I lose weight from not eating very much.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 59

Okie

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Re: severe abdominal pain and weight loss
« Reply #5 on: November 03, 2009, 11:47:49 AM »
Sorry  if it wasn't ckear.I'm still on pain meds. I had a colonoscopy (the test)

Chickpea

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Re: severe abdominal pain and weight loss
« Reply #6 on: November 03, 2009, 11:58:53 AM »
I had 4 months of this from April this year and it was devastating.  The pain was in my stomach, high in my abdomen, and lower down in my bowel.  I was also nauseous, vomited, had cold sweats and lots of nosebleeds.  I lost a lot of weight because it was too painful to eat, although dreadful when I didn't.  My GP eventually came up with the idea of taking an anti emetic half an hour before I ate so that the action of my stomach was speeded up.  This helped just enough for me to eat small amounts.  I also began to eat 5-6 times a day rather than 3, tiny amounts of rice with fish or chicken or 2 spoonfuls of soup.  The eventual diagnosis was gastroparesis, linked to other SjS neuro issues.  I'm still having investigations with the digestive diseases clinic - endoscopy done, colonoscopy to come - and treatment for severe anaemia.  Like Elizabeth I've got both low Hb and low ferritin levels and I'm just finishing a course of 8 iron infusions.  My rheumy didn't offer either a diagnosis or a treatment plan, although he did suggest that a glass of sherry before dinner might help!

I agree with Okie about the severity of the pain - at times all I could do was cry through it.  I've given birth three times with no pain relief and I can tell you this was nearly as tough as that!  Sleeping upright helped a little, with a hot water bottle tucked in for comfort.  Sometimes I'd have a warm bath at 3 a.m. just to ease the pain a little.  

It still comes back at times but rarely lasts more than a few days.  It seemed to me that after a few months whatever it was that caused it got bored and moved on to pastures new:  I had a series of UTIs just to add variety to life.

Love to all - Chickpea

genko_b

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Re: severe abdominal pain and weight loss
« Reply #7 on: November 03, 2009, 01:07:14 PM »
Wow, Chickpea, that's quite bout you had. It reminds me of when my colitis started - I was in so much pain. It felt as though someone had taken a huge pair of scissors, and was cutting me up through the abdomen. You're right, childbirth was not nearly so painful.

Did they say whether or not the gastroparesis is expected to return? My son has it, apparently permanently, and they think it is related to some nerve damage he sustained while in Iraq. I'm still wondering if he isn't beginning to show signs of auto-immune stuff. He has always had allergies, as well as some other as yet unexplained symptoms.

Genko

lovelaughter

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Re: severe abdominal pain and weight loss
« Reply #8 on: November 03, 2009, 02:36:32 PM »

Wow, I can relate to some of this..I was going to mention that mine ended up being gallbladder/gall stone problems
but I just noticed that you've already had yours removed. I've been in and out of the ER 4 times in the last 6 weeks before the gastro realized that my problem was my gallbladder.  It started with severe acid reflux (GERD) and underneath that was a gallstone problem. I am still recovering from my gallbladder surgery that was done last week. I've noticed that the surgical staples are sure painful and look forward to getting those removed tomorrow :)
I had to go to a very simple diet since the middle of September..mainly eating oatmeal, applesauce, white chicken and rice.
I noticed that I can no longer tolerate artificial sweeteners or onions..Those 2 things landed me in ER with severe chest wall pain and biliary colic...I lost around 15 lbs with this fear diet...
I look forward to putting this behind me soon...

My thoughts and prayers go out to you as the roller coaster ride is not fun,

Kathy

SarahLindsay

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Re: severe abdominal pain and weight loss
« Reply #9 on: November 03, 2009, 10:29:57 PM »
I'm newly diagnosed with SJS, and have just started having severe abdominal cramping also (among other digestive issues, already on Prevacid for heartburn). The cramps are incredibly painful, as others have mentioned - the worst I've ever had. I suspect it may be food-related, as it's happening on a fairly regular schedule (in the evening and first thing in the morning), and I've been reading a lot about connections between SJS and food intolerances... waiting for a dr's appt to see what tests can be done.

It is comforting to hear from others that have been through this already - hope we can all find some relief soon.

wordnerd

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Re: severe abdominal pain and weight loss
« Reply #10 on: November 04, 2009, 03:05:23 AM »
I had extremely severe upper left to middle abdominal pain for several years before I was finally correctly diagnosed with Autoimmune Pancreatitis.  I was also loosing weight, had no appetite, and was throwing up bile every morning.  Fun times  ::)

The AI Pancreatitis stuff for me started about 6-8 months after I had to have my gall bladder out because it was chronically inflamed, infected, and letting stones escape to where they were blocking my bile ducts.  I've since been in the several times hospital for up to 6 weeks at a time with the AI Pancreatitis.  Needed a feeding tube twice.

It seems to stay under great control on high doses of Prednisone.  Needless to say that after so much Prednisone I could do with a bout of weight loss again.  Oh well.

I hope you all get some answers and some relief!

<3 Lauren