Sticky Blood-Hughes Syndrome Support
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Getting some answers soon.....I hope!

Getting some answers soon.....I hope!

I feel nothing will help me!!

I have as a lot of you know problems with my stomach, eating & had gall bladder out over the last few years..............

Recently, well since earlier this year......the 'gall bladder stones' pain seems to have come back! no matter how mant times I have questioned the docs why have they come up with anything fact I was starting to believe perhaps I am making myself have the same pains I was before?!!! even tho' why would I?

It is there all the while but worsens if around meal times.............

I nicknamed it 'marble' as it feels like a very rough ball stuck inside a tube which rubs & makes it sore inside me? it can be very painful & the pain is wearing me out now!

My doc' after my last ultra sound scan (which showed nothing) has put me for an appointment to talk to a surgeon to shed some light onto this.....hopefully!

Only from a reply in a post on here from another lovely Hughie..... has the idea that I possibly could have: Sphincter of Oddi Dysfunction!!!

I have now mentioned this to my doc' & has said she too had considered this & wonders if the surgeon too will think this?

But what worries me is that I have read that I've already started the ball rolling by having my gall bladder this is the next thing that can happen ( apparently not common!) then it if not done right could cause complications & pancreatitis!! then other complications!

I'm scared this ball could keep rolling....................

Perhaps I shouldn't be worrying about all this yet as it's not been diagnosed as this.....

I will just have to wait for my appointment to come through & take it from there....if I don't lose my mind first! Sue x

17 Replies

Oh dear... and what an amazing name for something...I can see that the cat's face agrees with the possible diagnosis... I might consult it next time for my own ailments. I want blow by blow accounts and also the cats take on every stage of the diaganosis. Mary F x


Yes I thought the cat suited the way I feel at the mo'!!

Feel free to borow him ; )

Yes I thought the same with the name!! when I first read it my 1st instinct was.....someone was mucking about!!

I had to look it up before I properly believed it!! Thanks for your giggle & support Mary x


Fabulous work on the cat, Suzypaws! You ought to work for PETA. But no stressing for you. I know, that is impossible to ask when so much is in the air with your diagnosis. Know that the only thing in your power to do is to be prepared for your meeting with the surgeon. Print what you have. Ask your doctor for more if she has it. You might find helpful informationally. And that's all you can do is prepare yourself for answers. Really, it's speculation until you hear from the surgeon and pathologist. And you know you may not get ALL the bad stuff. You might actually get some answers behind the pain you have had for so very long. You know you have your mental capacity in check. You always ask yourself if you are crazy. (You know what I mean by that...crazy in the Hughie sense.) And we are here to tell you if you go over to the crazy side. (I would hope you;'d do the same for me.) Think positive. Stop that ball from rolling in your head. Visualize it. Stop it by thinking of other possibilities. Till that surgeon appointment rolls around be kind to yourself. Keep yourself occupied with the things you love to do. You cetainly have a talent for photography! National Geographic type. You are so strong for others, Suzypaws. Now it is time to take time for you. I wish I could make time fly for you. The wait is often more torturing than the news.

I wish you restful nights and happy thoughts.

Smiles and hugs,



Thank you Canary :)

It isn't one of mine (pic' of cat!) not this time.......I have a Halloween one planned with Salem (my cat)............I might get torn to shreds doing it............but I'm doing it!!!! he usually does anythin for treats :)

I have taken a look at your link & got to this: very similar to what Iv'e already read but a good link to know & I know I need to keep possitive & I would tell others to do it............its always the same when its yourself though isn't it?!!

I wouldn't even normally go reading into possible diagnoses for fear of scaring oneself & putting things in own mind.............but it really just sounds exactly what it feels like & seems too much of a coincidence before I even went into deeper reading?

Thanks again for your support & words xx


Rest as much as you are able, eat well and take care x


I cant eat hurts too much :( but I am trying to take care & be good :) x


Suzypawz - I'm most impressed that your new possible diagnosis has a name that would sound great for a special breed show cat!!! Only you could do that! Take good care of you, Larraine x


Thank you Larraine :) I love the cats expression too! x


My mother and a couple of her cousins delt with similar issues. Is like to say I know what the common thread was, but I don't. Mom started with ulcers in her 30 s and 40s. Then on to gall bladder issues, And IBS in her 50s and 60s, then gall bladder and pancreatitis in 70s and 80s. Surgery when she was in her early 80s fixed a long standing hietial hernia. She is now in a nursing home and, oddly enough, her GI problems are a thing of the past. A couple of her 1 st cousins ran through similar GI histories. But other then a guess about gluten sensitivity(?) I have no idea if there was a common thread. Sorry I have no light to shine, except to say I have seen this road before.

Love the picture.



Hi Gina, wow thats no good...........hope your ok x


Hi again Sue, ‘another lovely Hughie’ here.... :-)

I think you are absolutely right in taking one step at the time now. Wait and see what your surgeon says, but it is positive that your GP has already considered this diagnose as a possibility. SOD is fortunately one condition that is possible to diagnose, with a test – unfortunately the tests has some risks as you have found out, but if it reveals that you have SOD they will make the small cut necessary there and then and you won’t need another procedure. I went down another route first, I had Botox injections, to see if it made a difference, and it did, I had 3 months complete pain free and then the pain returned again. A second Botox injection gave a similar result so then I decided to have the investigation/procedure. It revealed that I had scarring on the sphincter which made the opening too tight, so every time I had a meal the bile would pile up behind and cause pain. The surgeon therefore decided to do the procedure, called a sphincterotomy during the investigation (ERCP). As I wrote to you last time, I did get a mild pancreatitis subsequently, but after 14 years of pain I still feel that was a small price to pay. I am almost pain free today, I get a few twitches now and then but that’s like nothing, doesn’t really bother me. I am soooo happy I went through it.

Talk to your surgeon, hopefully you have a surgeon who will refer you to someone else if he doesn’t feel he is competent to deal with this himself, but the main thing now is to start the process and see where it leads you. Don’t worry too much about all the different things that can happen, there is a small risk to any procedure, but everything doesn’t happen to everyone....although I am probably the exception there, according to my gastroenterologist. He said I should definitely start playing Lotto, as I seem to always be the statistical improbability when it comes to rare side effects and complications so I would probably have the statistics on my side in winning numbers too. I haven’t taken his advice yet, but maybe I should, he has been spot on with everything else he has advised on!

Good luck to you, one step at the time :-)

Take care, Helene.

PS! Loved the cat!


Thanks again Helene........I have noted all you've said to pass onto surgeon when I get the appointment also my gp is also interested in the treatment of Botox you told me about.

Thank you for the possitive feelings your'e sending too........I need them at mo' as I really have a fear of hospitals & when I had gall bladder out I even wrote letters to family members ready as I believed I wasn't going to come around from the anesthetic :(

I know it's pathetic but it's how I am.....I don't have a huge load of faith in hospitals right now...........

Thanks for your support xx


Had to laugh when I saw the cat and did a double take too, I used to use this picture as my avatar on another forum a couple of years ago so a great choice on your part.

Try not to worry too much until you have seen the Doc, hard though that is. X


Really?!!! great minds think alike!!! :)

I know I have to put whats going around my head at te back until I've spoken....I will :)

Thanks, Sue x


My Mother had so any GI issues that it is hard for me to remember them all. But when Helene mentioned GE sphincter surgery I remembered, " oh yeah. Mom had that too.". That was addressed with a couple of outpatient surgeries involving a tube to wiggle some more plasticity into the sphincter. That too went away with the hernia repair, though whether or not it was 1procedure or a 2 nd done by the surgeon since he was in the neighborhood anyway I do not know.

But the good news is that since the hernia repair Mom's tummy issues have become ancient history. Now it's the dementia!

My theory is that Mom and her cousins actually have/had Celiac. Though Mom's current GI health despite still being on a gluten inclusive diet may put that theory in the waste bin.

But as for me -I seemed to have been traveling that same GI road as Mom until I accidentally discovered the healing benefits of a gluten free diet.

( the wonders of IPad autocorrect! My IPad just wanted to amend " gluten free" into " utensil freeze." This time I caught it before hitting " submit.")


Lol on the end bit!!!

Thank you for your info' it is interesting reading, I will take all comments with me when I go & see where it gets me, I'm also looking into this Gluten free idea & I will ask the dietician I have to see next month & see what he thinks as I'm there to ask him about vitamins etc we can take & which ones to avoid I'll pass this by him too..........

Cheers, Sue x


Big hugs Suzy I cannot say much but am here for you


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