GI Blues Have Your Say Page

my wife is suffering a lot, she vomits after every meal either immediately or after few hours, all the test have been done and we are not discovering any fault, she lost her weight by 18 kg and became very weak, so help me out to solve her case.

Hi just wondering if someone can help me. My daughter is 20 and since April this year (2010) she has been getting pains in her side she passes out because its so painful and she feels so dizzy and light headed with it, She has hungry feelings but everytime she trys to eat shes sick. The Doctors have run test but now just think its all in her head. She is now struggling with her uni course because of the absent time off. Im going out of my mind how can i make her better.

Dear all,

I would like to appologise to you all for my lack of contact via the website in recent months.
Though it is a far cry from a good excuse, life's been pretty hectic, and things have got a bit on top of me. =/ However i am now back and ready to tackle any questions any of you may have.

I would like to offer my support to all of you who may be having a bad time at the moment and need a friendly shoulder to cry on, an ear to shout into, and or someone to rant at about all the difficulties you and / or your loved ones are having to endure.

Again my sincerest appologies for my absence.

All the best to you all

Rosie
xxx

My wife having Stomac problem since last two years having go for all the test endoscopy, ct scan x-ray, blood test.

But still having problem.

We have take treatment by GASTROLOGIST Dr. VK MISHRA in Kanpur at GASTRO CENTER.
No improvement has found
Request all Doctors to kindly send me the help details.

my father has pseudo obstruction. im just looking for someone that might be able to help him deal with it. he is always telling me that he wants someone to talk to that is like him. i just want to see him happy a few more times before he leaves me. please. i need someone's help.

hi , i am an indian living in northern india. i am married &have tow children.i am39 yrs.old.upto age of30yrs.my life was full of joy& free of any illness.from last 10 yrs.my life has become miserable as i am suffering from some kind of illness.symptoms are extra formation of acid in my stomach,gas&slow pain in whole of my stomache.endoscopy results show nothing abnormal.i have tried alopathy,homeopathy,ayurveda,yoga etc. but nothing fruitful.now i think nothing is left in my life& i am dying very soon.kindly if you can help me pls. let me know as i am living a miserable life.waiting your response.........

Well done to Mike for organising the giblues event yesterday(20/2) it was a great success.Rosie i would like to say how proud i was of you,as your mother i know how scared you were of doing the presentation,you didnt need to worry.My friend john and Mary found the event very informative and were extremeley impressed.bring on the next one.any help let me know.

Uptown Players are proud to continue to support and raise awareness for this very important charity. We hope many people will attend the 'Charity Fashion Show' on February 11th 2010. For further details see www.uptownplayers.co.uk
Well done to Rosie, Mike and everyone connected with GI*Blues.

Completely agree that so much more needs to be done into the research of this dreadful illness and in educating hospitals and GP's in how to treat and help people suffering with it. We are so proud with how Rosie and Grace cope with their illness. Love you both. xx

Let me start by congratulating you for this informative outfit.You have rendered yourself to selfless services for the benefit of the troubled ones.you deserve the cccolade of so many.
I am an African man of 41 years old.For the past 35 years of my life,I have lived a very miserable life because of some strange stomack problems that has defied all medical treatments. The pain started in the chest and has escalated to all over my body including my eyeballs,my throat and back. as I am writing this mail, I am experiencig very hot and chilly gass coming out of my anus and throat. I have sold all my belongins in an attempt to find a solution to this problem. I have taken all possible ulcer drugs including omeprazone,tagament,simetidine and all sorts of antacids. I neither smoke nor abuse alcohol. Infact I wish I will sleep one night and not wake up again because I cant bear this torture any longer. I am presently in Dublin Ireland. I wll need somebodys help in any way possible,be it advice or funds to try natural drugs.
thanks

I know that i may be biased being your mum,but i would just like to say you are an inspiration the way you have handled your illness and continued to strive to achieve in whatever you do.You will be a great support to your sister grace,if she ever has a crisis with the illness too.im very proud of you both

Hi Rosie, this is the first time in my life, writing in “Have Your Say” I would like to say that you are an inspiration to those who are suffering from Gastric, Constipation and Stomach disorder problems.
I would say, the patients diagnosed are lucky (don’t think I am mad) as if not diagnosed it means you are in a hell same as me.
My name is Sultan Mehmood, I am 37 years old, married and having one very beautiful daughter, I am from Pakistan but working in United Arab Emirates – Dubai, since 15 years, reason for writing is, to seek advice from members.
Life was normal, I was very healthy, macho body, eating everything never ever thought that I can also suffer and when somebody was saying not to eat this and that, I was making fun of them as I was thinking they are psycho but I don’t remember when everything changed and now I am in the middle of nowhere, actually I can’t even recall when I have suffered from this stomach disorder, why I am not using the word Pseudo as I am not sure I am suffering from what?
I remember, I had nose operation (I was having extra bone in my nose) which was operated by the Surgeon and he gave me medicine, what I remember after 2 days I had a bowel and I was unable to pass it out as it was constipated like anything, I literally cried due to pain but I didn’t realized that I have problem with bowel, what I thought, it is because of medicines, even then I was not bothered and life was going on, now the situation is that I only think how can I get rid of stomach discomfort, how can I have normal bowl in the morning, how can I live healthy again, I never lost the hope as I believe if there is disease then there is a cure.
GOD has given me strong will and I am trying my level best to control but I want to live healthy.
I have visited Gastroenterologist, he did endoscopy, after an year colonoscopy all the results are okay, Doctor says I have psychological problem, I am not stubborn and tried to follow whatever doctor advised but again nothing has happened any medicine works for 2 to 3 days, then doctor said you have “IBS/Functional Dyspepsia” he gave me medicine I was taking them continuously but to my horror again severe pains, discomforts, I have tired homeopathic, Ayurvedic and all type of medicines but nothing has changed and still I am suffering from this gastric problem.
I can write pages and pages but I think it will waste members time, thus looking for advise, perhaps it will help me to diagnose the problem.
Thanks fro reading

Hi, I'm a 53 yr old with type2 diabetes and I've just been told today that I may have the problem of Pseudo Obstruction I found it creased me up and I found it very hard to even think straight.I seriously didn't think I was going to make it to the hospital this afternoon but I'm still here :) It is an apparent possible complication of Diabetes as the disease affects the nerves it can affect the nerves in the Gut.

Hi Rosie

Your story is so encouraging. I have a son who is 4yrs old and was diagnosed at the age of 2 with a condition known as Mega colon, mega cyctis, hypo-peristalsis. It is ver similar to pseudo, if not the same. Every day is a struggle, he has had numerous operations and has an ileostomy and gastrostomy. He was on tpn for 5 months when he was 2yrs old, and has received tpn intermittendly and we are trying to manage with oral feeding now, but with alot of difficulty. What treatment are you on, because you look so healthy? My son is so malnourished and appears dehydrated most of the time. Take care.

Hi Rosie,
You are undoubtedly one of the most fantastic people that I have ever met, and I am proud to call you my friend. We met when we were both about 15 and suffering from different intestinal conditions (mine being crohn's disease) I think that your courage and determination is an inspiration to anyone who has ever faced adversity, and I hope that you will never change. Keep fighting the good fight girl. Love you millions xxxxx

Hi Rosie
Although this may or may not be genetic, I have it (I am 54) my daughter has it (31)& so does my niece (15). If it hadn't been for my niece being picked up at birth (GOSH) my daughter & I would still be none the wiser. We vary in how bad we are. My niece is by far the worst, she is on TPN and has had an awful lot of her gut removed, I have an ileostomy and my daughter a lot of pain & the problems that go with this illness. So maybe a genetic cause ? Who knows, but more research would be helpful to us all. Keep looking forward.

Hi Rosie
I suffer from extensive diverticular disease , I have had a left hemicolectomy , I have had my gaul bladder removed and suffer from painful adhesion pain, I recently had a bowel loop and need further tests, however, after reading your story I will never complain again.
I wish you all the best in the future, merry xmas
Chris

hi,myself is diabetic for past 24yrs with all possible complications like crf,neuropathy,retinopathyn now gastroperesis,worst is every day i vomit bile.ihad gallbladder removed past 14yrs n now thegastro which has stopped my activities.i feel very weak n frustated,hope for remedies n not denial as no treatment available.its like physically challenged.

I was really intrested to read your story, my son has been suffering for really bad stomach craps,going to the toilet upto 6 to 7 times day, unable to eat, lost alot of weight and we still dont know what is wrong with him. But reading your story has given me some hope of finding out what is wrong with him one day. Thank you for sharing your story

Hi Rosie,
I think you are very brave to have endured such terrible suffering in one so young. I am now 50 yrs old and have suffered from this terrible disease for my whole life. I have a neuropathy that mainly affects my colon so my symptoms are very different from yours. There is very little we can do since ths disease appears to be untreatable. I am very angry because I suffered so much abuse from the medical profession prior to diagnosis. I had to pay over £10,000 pounds just to get a diagnosis and now the local NHS just say that they do not understand the condition and so therefore cannot offer me any help. I have stopped asking for help and realise that my only option is to take steps to end my own life when the suffering becomes unbearable. It is important that websites like this exist to expose appalling behaviour by certain bigoted gastroenterologists and alert the authorities to the fact that patients with this disease need care and support. Kathy.

hiyaa rosie ... i was looking on the internet for an answer to what was rong with my ive had an illness for about 2 and a half years that sounds a lot like yours, ive had all the same test time and time agen but nothing is ever found when i hear stories like yours they truly inspire me and give me hope that one day i will find out what is rong with me thanks alot love Emily x x x
PS. could you please add my msn its emily_willow@msn.com X

Hiya Rosie just wont 2 say i think your realy brave and you've helped me a lot ... ive had stomach problems for 2 and a half years i am now 14 and have had all the tests you can think of, all they found was that i had slow gastric emptying and reflux, on my referel sheets it says things like cvs etc. I am realy worried as i have lost a lot of wieght, last year i wieghed 4 stone i have since put the wieght bak on but am still searching for an answer to my illness and would like 2 find out more about your condition please add my msn emily_willow@msn.com thanks x x x

Rosie,as your mum i know that its a real battle with your illness to study for your exams,but i have every confidence in you that you will succeed.You are an inspiration to many.Show us all what you have got.Good luck.Love you.x

i really liked your web page .i am also a suffer though i have only been diagnosed 5 months ago .i had an ileostomy 6 years ago which was reversed 1yr later .i find this more difficult to deal with as iam unable to eat solids. ifeel sick constantly and weak

hey rosie,hey gulsanara!
i have a different kind of pseudo obstruction, im not sick but i just retch constantly and am in constant pain. im in grovener a right now, and am so depressed as no one belives that i am in pain. they just say that going to school will help it go away. im so glad that im not the only one who feels like that, websites brilliant by the way x

Hi rosie its dom val stewarts son ive been lookin for your site for a while and what can i say WOW you are 1 in a million and anyone who tells you otherwise isnt worth your time. Your story is an amasing story and my heart goes out for ya. oh yeah HAPPY BIRTHDAY lol your a big girl nw 18 lol wb xxxxd

hey babe your new site looks great! hopefully this one will be as popular as the last. you know you can always count on me and the rest of the family for fundraising help. what your doing is great and its great to know that i can help. but we need awareness big time!!!!! one good thing is that i have my english speacking exam coming up and im going to bore the examinor to death with all my rabbit about pseudo hehe love ya rachel

In Reply to GVL, i would like to say although there is not much research going on at present in the uk due to lack of funds, my consultant Dr Nigel medows and another lead gastro consultant are looking in to more ways in which pseudo obstruction suffers can be made comfortable, or potentially one day be cured. As you stated most research is taking place in and around the area of sweden. This includes trying to determin wether or not this condition is genetic or not. However not so long ago i was told by another sufferes dad that GOSH specialists are looking into replacing the nerves of the bowel in suffers with the nerve variation of the illness, instead of potentially the full bowel and liver transplant. we will keep you informed x

hi rosie hope you r feeling ok gosh where macaulay goes resurt all the time your site is gr8 keep up the good work wish we could make this illness more awere where we live . regards andy macaulay xx

wanted to say wot a great website. your doing really well with everything keep it up

How much research into GIPO is actually happening? I heard that the only place that anything is going on is Sweden and that they are becoming the experts in bowel&liver transplants.

Hi Rosie
I just wanted to say that I think you have done an amazing job with the website. I spotted your poster on Grosvenor A when I was admitted a couple of weeks back. When I read your story, I felt as though I was reading my own. I'm really glad I read it because it has made me feel a little better about myself and that I'm not the only person whose tests come back negative. Thank you so much for your website. It has been so helpful and made me more comfortable and not feel like I'm alone with this problem. Take care and thank you.

Gulsanara