Gastroparesis and Bezoars!
Posted , 6 users are following.
Hello all,
As some of you know I have Gastroparesis associated with my Sjögren's Syndrome. Well, at the moment it is terrible and I am back onto a liquid-only diet.
My feeling is I have a gastric Bezoar. I got really sick in November and haven't been right since then.
From 2009 to 2013, I was only on liquids and pureed food. Since 2013 I had gradually increased my intake to fish and rice then more and more solid (normal) food. Last year (2017) our family started on a salad craze and I have to admit I completely forgot about the risk of Bezoars.
By November as I said, I started to get all the symptoms of epigastric pain and fullness, early satiety, and extremely bad lower gut pain. In retrospect IMHO, I think I was throwing off some smaller Bezoars from the larger gastric Bezoar and they were close to causing bowel obstructions which fortunately did not happen.
I have been on prokinetics (Domperidone) since 2009 which I think are very effective but not enough during this current event.
I will be seeing my Gastroenterologist again in a couple of weeks. When I saw him last he couldn't say whether I had a Bezoar or just a very full enlarged stomach. He wanted me to see if I could clear it. A Bezoar of the size I think it is will not clear as it's too large to go through the lower stomach sphincter.
He will do a gastroscopy in 2-3 weeks time and then all will be revealed! If it is a full stomach despite being on a liquid diet for six he will insert an NJ (nasojejunal) tube. However I don't think it will come to that as my opinion is he will find a Bezoar!!!
Anyone else ever had a Bezoar and can tell me how it was for you?
0 likes, 11 replies
diane03050 Megheart
Posted
Not Sjogren's Syndrome what do I do. Dr said blood test negative. I have 12 symptoms at least. She is going with check Bone Marrow. Sacred me My symptoms all to Sjogren's she says but she is just going with blood test. What do I do??
?MegHart I am so sorry you are going through so much. I am glad she said Neg but I can't figure out what is wrong with me
Megheart diane03050
Posted
Sorry to hear that you are still in limbo Diane.
Did you know that just because your blood test is negative now for Sjögren's Syndrome does not mean you do not have it? It took eight years before my blood levels tested positive. Unfortunately the official criteria as far as doctors are concerned is, that you need to have some 'objective' markers indicating that you definitely have SS.
Sometimes it just takes time. Try to get your doctor to at least treat your symptoms and that may make life more comfortable for you meanwhile.
It's possible that you do have something else, so if your doctor wants to keep exploring other disease options then that's good. After all it is the doctors job to try and find out what is wrong with you. You don't have to work it out yourself. Just be clear on your symptoms and what is happening to you and eventually (hopefully) it will become evident.
diane03050 Megheart
Posted
TY so much Meghart I am so happy you have talked to me. I feel I am going crazy Parotid Glands swelling etc. Today I am weak and weird . I feel so bad for you 8 yrs and you are feeling worse What is going on with you. What meds do you take. I went to the Oncologist today. He is leaning to a Bone Marrow . To find out any cancer anywhere to rule it out. It is hard to type today I am sorry. I am twitching worse today Don't know why. Please take care of yourself and let me know if you want to how you are please
Megheart diane03050
Posted
Hello Diane,
Have you posted a message starting a new discussion on this board? I'm sure if you did you would find people other than little 'ol me responding to you, especially as many will not read this, 'Gastroparesis and Bezoar' title as it doesn't apply to them. You know what I mean?
Interesting what you say about the twitching. Back in 2007 - 2010 when I first got ill with SS I used to twitch terribly. They are called fasciculations and I estimated I would have about 30,000 per day. However I rarely get them now even though my neurological system has been hit quite significantly.
I trust you can get to the bottom of your health problems soon but as I said keep documenting all your symptoms and eventually something will reveal.
maggie98748 Megheart
Posted
I can sympathize with you totally as I have been on a puréed food only diet for over a year because I just cannot digest food otherwise and have resorted to doing enemas and taking bicarbonate of soda. I cannot eat meat, fish, or anything difficult to digest, even puréed in a Vitamix which is very limiting and has ruined my social life.
As far as bezoars are concerned I think I catch the symptoms of little ones early enough and then take movicol, a softener, to ease the situation. I am not sure I get it right all the time because sometimes I can feel a very hard lump on my right side so then I don't eat at all but drink a lot of coconut water because that is excellent for hydration and contains vitamins and minerals, but also has a laxative effect without adding more fibre. Movicol doesn't contain fibre either.
I hope all goes well for you. A friend of mine with gastroparesis swears by coca cola!!!! It is supposed to break up bezoars. She drinks cans and cans of the stuff if she thinks she has overdone the fibre, the diet variety.
All the best.
Megheart maggie98748
Posted
Thank you Maggie for your response.
Ok so you know what it is like only being able to have liquid or pureed food. The smell of other family members food cooking or when I am cooking for them is almost unbearable. It always smells so yummy, yet one cannot partake.
Have you been officially diagnosed with Gastroparesis or something similar? Is it Sjögren's Syndrome related?
The strange thing it was drummed into me when I was first diagnosed with Gastroparesis in 2009 about the risk of bezoars, then as the years went by I completely forgot about them. That's why I was blissfully ignorant last year when I was eating grapes and having salads to my heart's content, of what I was doing to myself, so unlike you didn't catch the early signs. I know I felt some discomfort with lettuce, raw carrot and apple skin but I love raw food, so sort of ignored it.
Keep in mind I haven't been definitely diagnosed with a gastric bezoar yet but I'm guessing that's what I have.
Yes, there is a lot of medical evidence now to suggest that Coca Cola does dissolve bezoars because of it's acidic nature. However that would not be enough for me to drink it frequently as a bezoar preventer because of the other adverse health issues which can arise from it's use, although the thought did cross my mind. The amount of sugar in Coke for one thing would detrimentally affect my teeth and as we know, oral health is already compromised in Sjögren's. So too the amount of sugar can predispose one to Type 2 Diabetes. I'm not enamoured either with the alternative, the so called 'diet' versions of soft drinks as I think they contain their own poisons, like aspartame and sorbitol and my body definitely hates them.
If my Gastroenterologist wants me to do that treatment for a set period of time to try and dissolve the bezoar I will do it, even though I don't particularly like Coca Cola. Hopefully he'll just get it out by breaking it up during Gastroscopy.
We'll wait and see!
maggie98748 Megheart
Posted
Yes Megheart I was officially diagnosed with gastroparesis just over a year ago when I was being seen by an oto-neurologist for vestibular migraine, which can, in extreme cases like mine, cause it. I am scared to death of getting bezoars because I used to be a radiographer and I saw the results first hand, not nice, hence my no eating plan of action when I know my insides have come to a halt. It seems counterintuitive not to eat but it works for me.
Having to avoid proper food is such a nightmare. I spent Christmas Day alone until my family had finished their eating, which went on for hours of course, because they went out and I couldn't bear the thought of sitting at the table for hours watching them eat all that yummy food. People don't understand how restrictive it is either and just think I am making a fuss about very little. Like you I lived on grapes, apples, salad, raw veggies etc, I am a vegetarian so that was my diet! Now I have to peel all my veggies before making soup etc, yuck, yuck, yuck!!!
Do the doctors where you live understand it? I have yet to meet a doctor or a dietician who does! I have worked out the diet from books as the dietician I saw suggested I added 2 tablespoons of linseeds to porridge oats for breakfast!
I wish you all the best with the gastroscopy. I totally understand your reluctance to drink coke, I just thought it may work as a one off this time.
Megheart maggie98748
Posted
Hmmm! I have been very fortunate in the doctors I have either sourced myself or have been referred to. The first gastroenterologist after hearing my symptoms sent me for the GES (Gastric Emptying Scintigraphy) which revealed less than 7% digestion of solid food after 2 hours. Liquid transit time was close to normal. So a liquid diet it was for me then for four years. Gradually I felt a bit better and added other foods, However I obviously have gone too far - lol! During the years I've been eating more I still have been having quite small meals though.
I saw a new dietician a couple of weeks ago and she seemd to be very competent. All her suggestions were appropriate and apart from quantity I have been able to follow most of her advice. I am losing about 400 grams every five days, so it's not good.
I may try the coconut water you mention. My trouble lately is I gag when I drink something unpalatable.....so hopefully I don't perceive coconut water to be unpalatable. This gagging business has been precipitated by colonoscopy preps. I just cannot get them down now, so next time I'm due for a colonoscopy they'll have to think of something creative to do for bowel cleansing.
I need to go now but thanks for the conversation. Will talk again.
Megheart maggie98748
Posted
Hi again Maggie,
I have tried the coconut water and it is very nice. I wouldn't have a problem including it in my daily drinking regime.
From what you said about having seen patients with bezoars when you were working as a radiographer, what were the main issues? Having done quite a bit of reading about them lately I think, at least, phytobezoars are somewhat based in the realms of being naturally occuring whereas others like trichobezoars and some of the other 'swallowed object' bezoars are rather sad occurences.
maggie98748 Megheart
Posted
Hello Megheart I am glad you like coconut water, I love it too.
The bezoars I saw had caused a bowel obstruction which was excruciatingly painful, hence my fear of them! You are correct, they can recur once they have happened which makes me stay on the liquid diet as I really do have huge problems with normal food. I can manage white bread with a poached egg, or a mashed banana, but aside from that I zap everything in a Vitamix. I found other blenders didn't blend well enough for me and I still had problems. My system is very slow too, is yours? Is that a normal part of gastroparesis even with a liquid diet do you know?
When are your tests? I have had them too but I think the most useful one would have been a capsule endoscopy which can track most of the small and part of the large bowel but it does only work for eight hours I think so I guess it wouldn't have got very far.
Megheart maggie98748
Posted
Yes the whole of my GI tract is slow.
One of my first symptoms of SS was feeling I couldn't swallow well. The neurologist I saw had a cursory look down my throat, got me to do a couple of things, then said she couldn't see a problem. Idiot!
Soon after that I an oesophageal manometry test done and it showed dysmotility (disordered and slow motility).
Of course as I said I then had the GES done, which helped reveal the gastroparesis. I've never had a bowel transit time test but AS SOON AS I got gastroparesis the bowel sluggishness occurred. I say 'sluggishness' but it virtually stopped moving judging by the output. It has been terrible ever since. Needs constant vigilance - sigh!
I have had a cancellation appointment come up for this Sunday (yes the professor works Sundays). So I am pleased about that. Will know more after Sunday in terms of what tests he wants to order. Hopefully a gastroscopy for starters.