St Bart's Gastro / gastroparesis

[Fiona-Jane]

hiya!
i'm on the same antibiotic & probiotic treatment! i've hit the repeat of the treatment so i'm back on the antibiotics till friday then back on the probiotics for a month. i've taken the probiotics for a while now and i'm getting used to them, i found that if i couldnt taste them i could eat/drink them ok without feeling sick. i found that you cant taste them if you mix them into peach flavour yogurt (i use soya yogurts, by alpro i think), and strawberry flavour milk is also a good one! i once tried mixing it in chocolate soymilk- big mistake! i could see the probiotic clearly (as its white... and the milk was brown and suspends rather than dissolving) so it was very difficult to drink it!


however, im definately feeling better and i'm much less bloated than i used to be! the first set of treatment seemed to work great- i was only bloated a day or two (when i was stupid and ate some quality street chocolates...) rather than all the time. lets hope that when the treatments stop i'll keep this new settled belly!

one problem with the antibiotics though- they make my joints much more sore than normal and even my soft tissues hurt like i've sprained them. its all a bit odd!

fi xx

[evenwen]

Antibiotics = bed. Feels like flu!

Yes, the drink is very, lumpy. I've just beeen downing it with water and making unladylike bleurgh noises afterwards. Soya shakes sound like a nice plan. For some reason, despite a couple of friends saying it sounded amazing, they haven't wanted a sip whhen they've SEEN it

I couldn't have sugar or onions without being sick before i started it. I shall not be giving them a try while Im on it. Do not want to see the results! Bizzarely I have been able to have a few pints without getting ill (which I had been doign for months when i tried- bonus!)

[Fiona-Jane]

if you dont like the lumps mix it in the yogurt, and mix it really really well- i can barely notice them. dad even ate a spoonful and was going to eat all of it before i told him what was mixed into it. i prefer to take it in the yogurt.

and i've found that i can eat a little more lactose than i used to beable to eat (although when i discovered this i slightly over did it.... oops), which is fantastic! i'm able to put a little cheese on my wheat free pizza now and not have to bother too much about hidden sources of lactose which makes eating out easier!


fi xx

[loosebones]

oh fi, that sounds like it is finally helping now. I'm so glad.

my appointment is now on 5th March so hoping to get some answers.

[elka3131]

I am seeing a surgeon at St Barts on Monday to discuss the full thickness biopsy that I am having in March. I know it involves key hole surgery and removing (obviously) a full thickness sample of tissue. I'm not entirely sure where fro though.

Alot is resting on the result of this biopsy- and not just in for the doctors. The GI doctor is trying to rule something out that is serious, not sure what though.

I have been waiting for immunotherapy to treat my autoimmune condition.However, if this biopsy if positive for something then I can't have it. Aparently it would mess my whole body up or something. Everything seems to be connected and i makes everything complicated. They have to be careful what medication I have, what tests they do etc

But I REALLY need this immunotherapy. If i can hae it it will be IVIg and a plasma exchange. For the plasma exchange they put a cathater in y neck to take blood out and one in my arm to put blood in ad the attempt to remove the antibodies from my blood. There is no certainty that it will work but I need it to. This autoimmune condition messes up my life. 2 years ago it let me paralysed. It makes y whole body shake, I can't control my muscles, affects my brething etc

If this plasma exchange can help to control it, my quality of life would be improved so much. I would be able to go throgh a day with out wondering what is going to happen next, be able to communicate with people better etc.

Even if I can have the immunotheraoy it may not work. I may go through it all and come out the other side and it has not worked. There are side effects if the treatment aswell. I am willing to try though- I need this. I a due to start university in september and really need someimprovement.

Sorry, this seems to have turned into a rant, it is just that so much relys on this biopsy and I am scared about the outcome.

Ellis x

[Englishgremlin1]

Ellis - would love to know more about this treatment - and I hope that is does do you some good.

Do you know any web links where I can find more on it?

[elka3131]

Hello Englishgremlin1,

Until the age of 16 (about 2yrs ago) I was under the care of GOSH, so I have cont=inued using their wesite for information. They make it simple to understand and always make treatments sound less scary and less dangerous.
Here is a link with information about plasma exchanges-
http://www.ich.ucl.ac.uk/gosh_families/ ... hange.html
I would have my first treamtment everyday for a week and if it worked I woud carry on having it, I like this site because it is informative but reasuring.

Here is a link with information about IVIg (intravenus immunogobulin)
http://www.ich.ucl.ac.uk/gosh_families/ ... ilies.html
I would have IVIg every three weeks.

My doctor wants to try plasma exchange first as this carries less risks. However, if the plasma exchange fails (they don't know if any will work as my autoimmune condition is rare) he wants to do IVIg. IVIg has more risks. The gobulin for the IVIg comes from donors often in other countries and there is a small risk of me contracting infectiondiseases from it (such as HIV).

I have found these two sites particulary helpful. Even though I am slightly nrevous about these treatment I want to try them as the benefits could be great.

These treatment would be for a rare autoimmune condition. When get a strepptococal (throat) infection my body makes 'antibasal ganhlia antibodies' which travel to to my brain and attck the basal ganglia. This effects my s=musclas meaning I can't contro them very well. They left me paralysed to years ago and makes my muscles spasm uncontrollably. That is a simplification of the condition.

Does any of what i have said make sense?

I hope I get to have the treatment and it works

Ellis x

[gila]

sorry ellis- - but I am v v curious- what is your poss autoimmune condition?
BUT if you dont feel comfortable mentioning it- dont!!! and dont worry about my stupid curiosity!!!

xxg

[elka3131]

Hi Gila,

I don't mind talking about it at all. I used to, ut only ecause I was trying not to accept what was happening to me. Now, I am happy and comforatble to talk about it. Alot of people find it interesting- including doctors.
This is probably me being stupid but i don't understand the question. 'what is my poss autoimmune condition'?
Could you please explain what you mean. I am happy to answer any thing

Ellis x

[loosebones]

I think gila is asking what your possible autoimmune condition is. That's if you know of course.

[Englishgremlin1]

Does it have a name and how does it work is the is what is going through my mind - a new concept for the like of me. I looked on the link and it is well written about the treatement. I will be bearing this in mind when I see the local Gastro this week.

[elka3131]

Englishgremlin,
This treatment isn't directly for my gastroparesis. This is only for my autoimmune condition. I don't think the treatment will have any effect on my gastroparesis whatsoever. It is only to remove harmful antibodies from my blood. I need the biopsy first to check for something ut not sure what. Even though the people at St Barts are interested in what the treatment may do, it was not them who initiated it and they woudn't do it just for the gastroparesis. I only really mentioned it because it relies on te the biopsy. Sorry, if my post was misleading in any way.

Gila,
Sorry, I do understand your question now and it was me being stupid and not reading the question properly (thanks loosebones for your help). I don't mind talking about it (used to but not any more).
My autoimmune condition does not have a short easy to remember name, as it is a rare condition. A condition needs more people to have it before it can have a real name. At the moment my neurological consultant calls it an 'atiypical movement disorder associated with positive antibasal ganglia antibodies.' Which is a real mouthful, I know. In other words, it means when I get a streptococal (throat infenction) and my ody makes antibodies to fight that infection it also makes harmful anitbodies. These antibodies travel staright to my brain and attack it. It attacks the part that effects my muscles, which causes neurological symptoms. Two yars ago, I was paralysed which took me a long time to recover from that. Now, it makes my muscles shake uncontrolably, so my body shakes. Um, Im no really sure if that makes sense but I hope it does. It is pretty hard to explain. Does this answer what you asked, Gila?
It's not stupid to be curious, I get curious aout alot of things. If aomeone would like to know something it is always better to ask than to wonder.

Ellis x

[gila]

I should have just asked clearly- what's the name ....
and yep, it is rather a mouthful ...
and sounds rather evil

do you shake all the time now? or only when you have been exposed/attacked by strep?

kinda wondering (and be warned I am often too quick at "jumping to conclusions", seeing connections where there arent any etc ) if your newly found AI condition might be behind other peops probs with muscle weakness, uncontrolled shaking, paralysis -like and other odd neuro like probs... but much much less severe than in your case... ???????

what did the neuro gastro at bart's think/have to say about it? were they interested ?
and the doc that dxed you with hms were they interested ? was it prof g?

and nope,I agree curiosity isnt stupid, how else would anyone learn anything but I do get 'stupidly' curious at times and can be a bit indiscrete and too pushy...
xxg

[barkingmad]

Thanks Gila! I hope not! A few of us are still having investigations for those kind of symptoms..now I will be completely confused when i eventually get to go back!

thank you for sharing tho Ellis. it sounds like you have had a rough few years.

[Englishgremlin1]

I saw the local consultant today - he was freindly but not in a hurry to do anything. He want me to have a scope job and took more bloods and will see me on 4 months time. I will have to stick with it but I don't think he took me very seriously and to cure the runs during the night he suggested I have sleeping pills!!!!!! What a crazy idea - but he does not have to wash the sheets.