Can anyone help
Question:
Hi I’m new to this group, so please forgive, any mistakes etc. I’m a 23 year old guy from London, and have been coping, with cronic pain for just over a year now. This is the shortened version: It started off feeling like an upset stomach, and vomitting, but with intense pain gradually getting worse and worse, which in the end meant I had to go to A&E in sevre pain, and unable to urinate. Between then and now, I’ve been in and out of hospital like a yo-yo, in almost constant daily pain, sometimes too much to bear, and permanently cathetirised. I can not walk properally, with out crutches, and again this causes enourmous pain, radiating throughout the abdominon and down the legs. I have so many tests, it’s unbelivable, and they still don’t know whats wrong. I’ve had to give up, College, my Job, and I’m bedridden in pain most of the time. Everything has fallen apart, I just wondered, if any-one might have any ideas, and if any-one else knows what I’m going through, for a little support. Thanks Ian London (UK) Remove diespam before mailing
Response:
Ian Sorry to hear about your Pain and the problems it’s causing you. Here at this NG you will get support !!! I can pray for you that’s for sure ! Ian I hope you don’t have a problem with my praying for you ? ! I set up this site for hurting people !! <http:maxpages.com/birdman101> CHECK IT OUT PLEASE !!! It could help you in a way of ENCOURAGEMENT ! Let me hear back from you!!! CW CARES about hurting people !! – Hide quoted text — Show quoted text – > Hi > I’m new to this group, so please forgive, any mistakes etc. > I’m a 23 year old guy from London, and have been coping, with cronic pain > for just over a year now. > This is the shortened version: It started off feeling like an upset stomach, > and vomitting, but with intense pain gradually getting worse and worse, > which in the end meant I had to go to A&E in sevre pain, and unable to > urinate. > Between then and now, I’ve been in and out of hospital like a yo-yo, in > almost constant daily pain, sometimes too much to bear, and permanently > cathetirised. I can not walk properally, with out crutches, and again this > causes enourmous pain, radiating throughout the abdominon and down the legs. > I have so many tests, it’s unbelivable, and they still don’t know whats > wrong. I’ve had to give up, College, my Job, and I’m bedridden in pain most > of the time. > Everything has fallen apart, I just wondered, if any-one might have any > ideas, and if any-one else knows what I’m going through, for a little > support. > Thanks > Ian > London (UK) > Remove diespam before mailing
Response:
Ian, How terrible for you! The frustration of not knowing what is wrong with you must be overwhelming! What kinds of tests have you had? Do you have no diagnosis or a bunch of different ones that aren’t adequate? I sincerely hope you are getting the medications you need. I don’t know how difficult it is to treat pain in the UK, are the prescribing laws liberal or strict? Anyway, welcome to the group and I’m really sorry you need to be here with us. I do think you will find much support here if you read and post often. Sincerely, Shauna in Phoenix – Hide quoted text — Show quoted text – > Hi > I’m new to this group, so please forgive, any mistakes etc. > I’m a 23 year old guy from London, and have been coping, with cronic pain > for just over a year now. > This is the shortened version: It started off feeling like an upset stomach, > and vomitting, but with intense pain gradually getting worse and worse, > which in the end meant I had to go to A&E in sevre pain, and unable to > urinate. > Between then and now, I’ve been in and out of hospital like a yo-yo, in > almost constant daily pain, sometimes too much to bear, and permanently > cathetirised. I can not walk properally, with out crutches, and again this > causes enourmous pain, radiating throughout the abdominon and down the legs. > I have so many tests, it’s unbelivable, and they still don’t know whats > wrong. I’ve had to give up, College, my Job, and I’m bedridden in pain most > of the time. > Everything has fallen apart, I just wondered, if any-one might have any > ideas, and if any-one else knows what I’m going through, for a little > support. > Thanks > Ian > London (UK) > Remove diespam before mailing
Response:
Hi Ian, Welcome to the group and I am so sorry that you are in so much pain and without a diagnosis. A few questions like what kinds of tests have you had (MRI’s or CAT scan, ultrasound, lower GI studies or ?). What kinds of medications are you on? One of the good things about this group is that no matter what causes it , we are all in the same boat and suffering from intense pain and must deal with it in anyway we can. It sounds like you need to find a doctor who is willing to address the pain issue while they are looking for a diagnosis. I can think of no reason not to at least be treating the part that they do know and that is your PAIN. You are so young to be dealing with all of these life changing events that were caused by your disability. What kind of a support system do you have (friends & family) ? Ian, you have come to the right place and there are so many kind and compassionate people here who I am sure will be able to offer you some support, offer suggestions , listen , cry, send hugs, magic bubbles and even oreos. Welcome aboard . If I can help with specific questions or just offer support please email me or post here. Kind regards Katz in California
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Ian, WELCOME!!!!! I am so sorry to read about your horrid illness =( You will find many here that understand where you are coming from. Do your DR’s have you on any pain meds to help ease your pain???? I am so sorry you are hurting so badly =( Pain SUCKS! Kim
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- Hide quoted text — Show quoted text – > Hi > I’m new to this group, so please forgive, any mistakes etc. > I’m a 23 year old guy from London, and have been coping, with cronic pain > for just over a year now. > This is the shortened version: It started off feeling like an upset stomach, > and vomitting, but with intense pain gradually getting worse and worse, > which in the end meant I had to go to A&E in sevre pain, and unable to > urinate. > Between then and now, I’ve been in and out of hospital like a yo-yo, in > almost constant daily pain, sometimes too much to bear, and permanently > cathetirised. I can not walk properally, with out crutches, and again this > causes enourmous pain, radiating throughout the abdominon and down the legs. > I have so many tests, it’s unbelivable, and they still don’t know whats > wrong. I’ve had to give up, College, my Job, and I’m bedridden in pain most > of the time. > Everything has fallen apart, I just wondered, if any-one might have any > ideas, and if any-one else knows what I’m going through, for a little > support. > Thanks > Ian > London (UK) > Remove diespam before mailing
Sorry to hear you are in so much continual pain Ian. But don’t give up in your search for a proper diagnosis,your best hope may be at a teaching hospital,they seem to be the ones who can find the answers to the hard questions. This group has a lot of nice sympathetic people who can sympathize with the position you find yourself in. Welcome to the group. aussie annieb
Response:
These symptoms need to be taken seriously. She needs to see a GI specialist who will do some tests on her, including a colonoscopy. Sounds like she certainly has a real problem. Its not unusual for sufferers of colitis, chron’s or celiac disease to have a hard time getting a proper diagnosis, so you have to keep trying. And it certainly is possible to have to go to the bathroom 30 times a day. Patsy
Response:
Tim: The first thing your wife needs is to find a doctor who will listen. If she gets nervous or intimated, it would help to have something written down so she won’t forget to mention something. Having a diary to track her trips to the restroom is helpful. For example 12:00 loose stool, blood present, etc. She may ask the doctor if he thinks a referral to a gastroenterologist would be helpful. It is most important that a physical cause is ruled out first, before they start assuming it’s all in her head. The gastroenterologist is a specialist who can perhaps do a colonoscopy and see for sure what is going on in her intestinal tract. You say this has been going on for years, so it isn’t going to suddenly go away on its own. Good Luck Marty
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I agree with Marty, but your wife must be comfortable with her doctor for this will be a long relatioship, and she cannot feel intmidated. Good Luck ! Cathy
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From the look of your post you’re from the UK? It’s time to get to a private specialist. To the untrained, she certainly has the family history for Crohns/Colitis or Celiac disease. I had a family member who got to a specialty research hospital in London for his problem (not digestive). Per haps if you push hard enough you could find a similar institution.
Response:
Hi Tim, I just got done reading your letter concerning you wife. I am so sorry for all that you and your wife are experiencing. I, too have Crohn’s and I’m trying to figure things out for myself. My doctor here at the UW in Madison have put me on an Cholestyramine for my problems with loose stools. Have a doctor try this if you think it might help!!! May God Bless you both !!!!!!! Michelle Owens 339 1/2 N. Pine Str. Janesville,Wi 53545-3515
Response:
> I am sending this message on behalf of my wife.For the last nine or >so years she has suffered with the following symptoms on a regular if >not full time basis: Constipation,Diaorrhea,frequent passing of >stools(she went 38 times last night)Wind both upper and lower which is >painful,grumbling stomach,blood in stools,offensive smelling >stools,shortness of breath, chest pains,ulcers/sores around anus,and >restless legs. >My wife has osteo arthritis and asthma and did at one time suffer >quite badly with eczema-she thinks it might be coming back after an >absence of several years.There is a family history of >Crohns,Eczema,Asthma, and food allergy.
All of what you say is consistent with undiagnosed celiac disease. I have lots on this. Here’s one survey: Top 20 Diagnoses Before a Diagnosis of Celiac Disease 1. Anemia 2. IBS 3. Psychological stress, nerves, imagination 4. Diarrhea 5. IBD 6. Diabetes 7. Spastic Colon 8. Ulcers 9. Virus (Viral Gastroenteritis) 10. Chronic Fatigue Syndrome 11. Weight-loss 12. Allergies 13. Amoeba, Parasites, Infection 14. Gallbladder Disease 15. Thyroid Disease 16. Cancer, Lymphoma, Digestive 17. Colitis 18. Cystic Fibrosis 19. Lactose Intolerance 20. Reflux Data from an on-going Celiac Disease Foundation study of 600 Biopsy-proven celiacs. Taken from the Fall 1996 CDF Newsletter. CDF can be reached at: Celiac Disease Foundation 13251 Ventura Blvd. Suite 1 Studio City, CA 91604-1838 818-990-2354. Newsletter subscriptions are sent to members, and membership is a $35 tax-deductible contribution per year. For more information on gluten intolerance see this page of annotated links: The Gluten-Free Page: http://www.panix.com/~donwiss/ Don (at panix com).
Response:
Hi everyone, I am sending this message on behalf of my wife.For the last nine or so years she has suffered with the following symptoms on a regular if not full time basis: Constipation,Diaorrhea,frequent passing of stools(she went 38 times last night)Wind both upper and lower which is painful,grumbling stomach,blood in stools,offensive smelling stools,shortness of breath, chest pains,ulcers/sores around anus,and restless legs. My wife has osteo arthritis and asthma and did at one time suffer quite badly with eczema-she thinks it might be coming back after an absence of several years.There is a family history of Crohns,Eczema,Asthma, and food allergy. My wife has seen several doctors about this problem and has met with a very negative response ranging from ‘It is all in your head’ through to’ You can not go that many times’ As well as depressing her it also leaves her exhausted due to lack of sleep.It also causes her a great deal of embarassment as she often finds it difficult to get to the toilet in time. I would be most grateful for any advice re what the problem could be and how to alleviate the symptoms. Thank you for taking the time to read this. Yours Tim Gatty
Response:
Hi Tim! It’s time to find another doctor. And keep looking until you get one that will help your wife instead of blowing her off… Best of luck! Pat — Programmer & Systems Administrator +1 713-977-4177 x115 Larson Software Technology http://www.cgmlarson.com
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