stomach/digestion problems w/ CREST

• By spiritlove
• Reply 858284
• May 1, 2010 at 2:36 pm
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Might be but, have you seen a Gastroenterologist about it?
You need to see a doctor who specializes to make sure.
Love,
spiritlove

• By SJL
• Reply 858379 · In reply to 858284 by spiritlove
• May 1, 2010 at 3:56 pm
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Thanks for responding. Yes, I have been to many doctors for many things since my disease is systemic, but I plan to see my GI doctor soon. I am just so uncomfortable (not to mention embarrassed) and was wondering if there were any quick fixes....
Have a nice day.

• By spiritlove
• Reply 858396 · In reply to 858379 by SJL
• May 1, 2010 at 4:05 pm
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Wish there was an easy answer. I find this disease the most frustrating of all!
Wish I could offer a solution.
Keep trying and you'll find the answer yet but, I wouldn't be surprised if it is Scleroderma! I've just spent a frustrating month and believe me you've got nothing to be embarrassed about!
Good luck!
Love,
spiritlove

• By Chepito
• Reply 858435
• May 1, 2010 at 4:35 pm
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SJL,I, too have the bloated stomach, gained weight, IBS, etc. They did an endoscopy & found I have "watermelon stomach" which is very common in scleroderma patients. I take Nexium for the upper GI problems, and eat soft foods and blender foods & feel better - except for the feeling/looking pregnant part. Spiritlove, what happened that you had such a bad month? Please share.

• By KAYE45
• Reply 858473
• May 1, 2010 at 5:19 pm
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Yes, stomach looks and feels like I'm pregnant. Have put on 10-15 lbs. in the past few months. Very depressing! Chepito I also have "Watermelon Stomach". 4 Laser treatments so far.

• By SJL
• Reply 858491
• May 1, 2010 at 5:39 pm
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Thank you everyone for your replies; misery loves company, eh? What are your symptoms of 'watermelon stomach'? If this is what I have I am very bloated, IBS, easily full, stomach tenderness, and actually I hardly even eat that much; having sjogrens doesn't help. Is there a cure so that I don't look/feel 6 mths. PG?! Could it be something called gastroparesis? This all started in November; before that I couldn't gain wt. at 102 lbs.; a different problem indeed.

Again, thank you for the company, everyone.

• By jeannep
• Reply 859332
• May 2, 2010 at 12:09 pm
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Wow, your symptoms are a carbon copy of mine! I was diagnosed with a connective tissue disorder back in the early 90's when little was known about all this stuff. There is hope! I've had digestive problems throughout my life and figured for many years that it was genetic as alot of my family members have GI disorders. Now I'm convinced this whole mess is probably genetic! Recently I was diagnosed with CREST Limited. It was great to finally have a name for it.

Long story short, I've been evaluated by numerous specialists over the years. The consensus was to treat each flare as it comes. Things went along pretty well until 2000 when I was hauled into the hospital for a bowel obstruction. No surgery was required. They were able to pump my guts out with a G-tube for 4 days and send me on my way with strong istructions to keep the GI tract clear. I took Miralax daily for about 6 months and then weaned myself off successfully by watching what I eat, getting plenty of rest and lowering my stress levels. Stress does play a big role in how I feel.

Currently, I have the bloated stomach you describe. I've experienced weight loss and intermittent bouts with diarhea and constipation. This all started up again in November but I held off being seen until February of this year. I had changed insurance plans since my bout in 2000 so we have had to kind of start from scratch again. However, that's not a bad thing. I'm amazed at how much more they know about these chronic illnesses now. They have spent the last couple of months ruling out anything else that might be going on. Lots of bloodwork and CT scans. So far--the tests have revealed nothing new except a thickening in the intestinal wall that affects motility. This area happens to be the area that was the problem back in 2000! This is like working a 2,000 piece jigsaw puzzle without the picture on the box!

This website has been a God send. I've learned a lot of tips here for the day to day while all this testing is going on. I'm trying to gain some weight without overworking my digestive track. Ensure is working nicely, combined with frequent small meals, plus I know I'm getting added nutrition from the Ensure. I have more energy and we all know that fatigue affects all of us in a big way. I continue to manage my stress levels and concentrate on what I CAN do and not things I can't do. All I can say is keep the faith---we are all here for you! I would welcome any new suggestions on getting rid of this bloated gut though. I've been out of work for a couple of months now and have been trying to interview for jobs with some self confidence and this bloated tummy doesn't help much with the wardrobe issue!

• By SJL
• Reply 859554 · In reply to 859332 by jeannep
• May 2, 2010 at 2:57 pm
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Thanks, Jean, for your empathy. My autoimmune diseases came on in the 80s w/ raynauds; now the CREST, sjogrens, arthritis. This belly thing has gotten to me the most right now; can't wait to get into my GI specialist. I'm thinking that the scleroderma is effecting my intestines, and I'm not absorbing/digesting the way I'm suppose to. Thus, I think I am full of gas and bacteria - very uncomfortable and embarrassing... Hope to get a diagnosis soon, but not looking forward to lower GI tests.... We'll see. Have a great Sunday.

• By jeannep
• Reply 859746
• May 2, 2010 at 6:39 pm
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GI is next for me too. I have one more CT scan tomorrow and then, hopefully, they will zero in on what I went to them for in the first place. Trouble is, once they get in the testing mode, they check every little thing! Let me know how you come out with your GI doc too. I'm with you, this belly stuff has been a real pain! So uncomfortable. Have a great week!

jp

• By SJL
• Reply 859893 · In reply to 859746 by jeannep
• May 2, 2010 at 8:48 pm
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Thanks, Jean, I'll try to keep in touch. Sandy

• By Barbara33
• Reply 869857
• May 9, 2010 at 12:05 am
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I think it is very common for us to have stomach issues. Mine were really bad. I have most of them cleared up with diet change. I think the stomach is so damaged that I just simply got to a point that I was unable to eat certain foods and digest them at all. Once I figured out what food I couldn't digest and removed them it got much better. Most of my acid reflux even managed to clear. I have to eat mostly a liquid diet. Its to hard to digest allot of solids and I had to remove all gluten, beans, nuts, and soy products. Gluten you should try to remove right away. If you talk to allot of Scleroderma patients they will often tell you they can't digest gluten. It is very hard to digest and remove anything that is processed. You will see a huge difference really fast.

• By SJL
• Reply 870043
• May 9, 2010 at 8:55 am
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Thanks Barbara for your assistance. I will look into a gluten-free diet. However, now I'm thinking my bloated,distended belly may be due to my ovarian cyst... cancer!? I'm hoping to see my gyn soon. I have every symptom but the frequent urination. I'm a little worried AND very tired of looking PG.

• By cottoncandy
• Reply 870113
• May 9, 2010 at 9:41 am
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Hi I would like to add to Barbara's list of what not to eat, corn (it's in everything) dairy and refined carbs and sugar. I too have had alot of the same gi issues these changes have made a huge difference especially in the gas and bloating department.
Just finished looking at DrAxe.com recommended by another member and found it very interesting.

HAPPY MOTHERS DAY TO YOU ALL!!!!!

• By SJL
• Reply 870665 · In reply to 870113 by cottoncandy
• May 9, 2010 at 6:07 pm
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Thank you all for responding. I'm wondering if I should look into ovarian cancer? I have an o. cyst and all of the symptoms but the frequent urination. I think I will call my gyn this week.
Mother's Day is kind hard for me because my Mom died when I was 7, and my only child is pretty much estranged from me...
S.

• By ivana
• Reply 870828
• May 9, 2010 at 8:27 pm
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I also had a bowel obstruction last year. Now I take probiotics and different laxatives to keep things flowing. I also take digestive enzymes with meals. I also look like I'm 6 months pregnant.
Now I have a gastric ulcer so an endoscopy was ordered.

• By SJL
• Reply 870899 · In reply to 870828 by ivana
• May 9, 2010 at 9:23 pm
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That sounds like me - 6 mths PG. Can't wait to see my GI on 6/8 and maybe I will get check out for ovarian cancer too??? Thanks for your input, Ivana. Good luck w/ the endoscopy.

• By Seraphim1524 (Inactive)
• Reply 870945 · In reply to 870665 by SJL
• May 9, 2010 at 10:04 pm
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Hello there...ummm no..don't look into ovarian cancer...with this disease...well I don't like to borrow trouble if I don't need to :-) I had a huge cyst on my right ovary when I was 38 (52 now) and it gave me all kinds of pain and problems. Once it was out, I was fine..and I had all the "symptoms" of ovarian cancer..but it wasn't. It was just a very large cyst wrapped around my ovary and had to come out. And soon after surgery..all my symptoms left me...so yes, go and see a gyny to make sure all your lady parts are doing okay...but please don't worry or fret...we all take this day by day, minute by minute and symptom by symptom and get through it the best that we can. This website is such a blessing as we are all here for each other. I love this website and all the wonderful people on it!! Feel better girlie and know that we all care :-)

• By TINATURNER
• Reply 871125
• May 10, 2010 at 2:58 am
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This is so funny, that is the reason I finally gave up trying to sleep tonight do to GI swollenness. Heaven forbid i have an extra rib and corn on the cob for mothers day bbq. I feel like I ate thanksgiving dinner! Yes, digestion is a big problem if GI is involved with SD. I have an endoscopy tomorrow (3rd cauderization) and will talk to doc as it is harder to eat much at one meal anymore and this has slowly gotton worse. If you had watermelon stomach you would most likely know as slow blood loss is in stomach and very fatigued do to low hemoglobin but digestion problems are part of the package and watermelon stomach is not real common with SD.

• By Chepito
• Reply 871334
• May 10, 2010 at 9:15 am
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My watermelon stomach doesn't bleed out - they found it with endoscopy. I take a probiotic also & laxative, and Nexium but the swollen stomach remains. I do water aerobics & walk & nothing seems to get rid of the stomach. The swimming also helps the swollen joints, etc that goes with SD. I totally relate to how you feel about the stomach. I've always been blessed with a petite figure & now I'm 57 years old & look pregnant!

• By TINATURNER
• Reply 871577
• May 10, 2010 at 11:04 am
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I did not know that watermelon stomach did not bleed with everyone. I learn so much from this site. It is morning and I still feel like I just ate a big dinner. I am going to try probiotics and cut the starch out.
SLJ hope your tummy feels better.