Well Celtic Girl I think you know you are not alone.33 going on 98 I am really upset that you have had such a hard time. Has the same Dr. did all of these surgeries and diagnosis? I have had IBS for 26 yrs and have had the swelling and pain with it. I compare it to 11 months pregnant now. I have had it with DRs. Just looling for a quack now to give me Donnatal or anything to stop D so I can work. Started with joint swelling just recently. Sitting here with ice on knee right now. I am 51 and raised kids so I cope. But I gotta put a question out there. Is there any Drs. reading this because something has to be done. D and headaches and joint swelling and skin rashes. HELP!! I for one am sooooo tired of spending my whole paycheck just to be functional. I was a SINGLE widow for 7 years and I almost starved to death trying to survive. My Dr. wanted me to go to Mayo but been to evey specialist here and to IU medical. I really think all is a waste. They dont have a clue. I too do the weight thing. First size 7 then 12 then 4 falling off then 12 too small. All sicks and Drs just pass you around. The ONLY thing that even helps me is Donnatal and alcohol. I wish could give you a solution but I cant. I have tried all medicine and diets. Just know you are not alone. Maybe we should ALL GO TO THE SAME CLINC AT SAME TIME AND DEMAND THEY TRY TO FIND A CURE FOR IBS AND ALL OF THE SYMPYOMS.OK had too much to drink tonight must go to bed. Hugs all, hope you have lots of love in your life to get thru this.
I need to say what I meant by alcohol was if I go out to eat I drink a drink before I eat. Seems to relax my stomach so I dont swell and it doesnt go through me so fast. I have tried enzymes and a long list of medicines. Instead of taking alot of medicine on a regular basis I would rather have a drink occasionally. I dont go out alot because of my stomach . To be honest if it wasnt from having to work I would only take medicine when I leave the house. But without something in my system I will just be sitting at work and have an accident before I even realize it. YUCK. All of my Drs. just want me to take medicines all the time to work and I am really worried about long term damage to my liver and the rest of my body. Can tell you that a few months ago I was so tired of feeling bad all over that we went on a steamed vegs. and chicken diet. Fresh fruit too. Of course we are suppose to stay away from fruit but I felt really good. I cannot have milk products, they really make me bad. Just cheese and yougurt.I was waling and running on treadmill. Now I have a tear in my shoulder and bursitus and my knee has a softball on the side of it. So much for running. They also said I have DDD in my neck causing my headaches. What a basket case. I cannot find one DR. to treat all. I was going every week to someone to be functional. SOOO I just want one Dr. not really a quack. I was really in a bad mood last night when I wrote that and had 3 beers without eating. Take care.
This is a very long thread but I think I have gotten a large part of it. What did a colonoscopy show? I had a similar problem shortly after I was diagnosed with Crohn's Disease (Inflammatory Bowel Disease). I also have IBS. Turned out I had an obstruction that would open and close. Part of my bowel was so narrowed that digestive contents went down so slowly it caused the severe bloating. Eventually, my bowel perforated (developed a leak) and I ended up in the hospital and had a bowel resection. The pain made me claw at my bed. It was all I could do not to scream.
I was convinced that the severity of the bloat I had was not caused by anything less than a severe medical problem even though doctors kept telling me it was gas, etc. I am glad I kept pursuing it because I may have died if I ignored it.
I hope you find an answer for your debilitating problems. Don't give up and follow your instincts. You know your body better than anyone else.
God Bless You...
Kim
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds
I was convinced that the severity of the bloat I had was not caused by anything less than a severe medical problem even though doctors kept telling me it was gas, etc. I am glad I kept pursuing it because I may have died if I ignored it.
I hope you find an answer for your debilitating problems. Don't give up and follow your instincts. You know your body better than anyone else.
God Bless You...
Kim
41, diagnosed 1992 (25), resection 1993, remission for 16 years, no current meds
My husband did not have the diarhea when he had alcohol before it ate but when he didn't you may has well have thrown the food down the toilet and saved the stress. of course when you are working this makes it difficult since you cant' be swigging on a bottle so he had to make some very quick trips on his lunch time.
I sometimes well most of the time experience stomah swelling I'm not sure if I'm just getting full easily and fast.It gets to the point where it can get uncomfortable and I do not want to eat.It probably is do to feeling bloated.
This isn't my usual site (as you can see below) but with this new problem, I thought the IBS site might give me help. Healing Well has provided more help than any Doc I've seen. I could have written your post (gained 40 lbs in a few months while consuming less than 800 calories per day.
This ugly look combined with the belly pain is more than I can handle!
I look like octo-mom!
I wouldn't wish this on anyone!
Bull's Eye Rash 9/07 (DX as cellulitis)
Menningitis 10/07
Symptpms:headaches, extreme fatigue, insomnia
GP DX "Depressed & busy mom"
Saw Rheumotologist 2/08
Lyme test equivocal
LLMD seen 4/08
Ignex Positive
canyonbabe 711 Thanks for the reply about your husband, makes me feel not so alone. I have to say I ate out the other night and had 2 beers and a complete disaster after. My fiancee said no more going there, which was a local favorite 
We like to never got home. I think we stopped at every gas station on the way. I hurt so bad then exploded. Had a terrible month and really starting to get down. I have so much joint pain I cannot hardly function. Everytime I go to the Dr. they do test and find a reason but it goes to another spot and another. So far I have been diagnosed with Ibs Schorriasis Labreal tear in shoulder Bursitus and DDD in my neck. Now my knee has softball on it and my back hurts. Im sorry but I think all is related but my Drs. just send me to someone else. Not sure what Im going to do anymore. Ijust want all to go away/ Im 52 and couldnt go out all weekend. Was on my throne 13 times Sunday. I just have to find a specialist in Indiana that will treat all of my problems. Does anyone know if one in Indiana?
We like to never got home. I think we stopped at every gas station on the way. I hurt so bad then exploded. Had a terrible month and really starting to get down. I have so much joint pain I cannot hardly function. Everytime I go to the Dr. they do test and find a reason but it goes to another spot and another. So far I have been diagnosed with Ibs Schorriasis Labreal tear in shoulder Bursitus and DDD in my neck. Now my knee has softball on it and my back hurts. Im sorry but I think all is related but my Drs. just send me to someone else. Not sure what Im going to do anymore. Ijust want all to go away/ Im 52 and couldnt go out all weekend. Was on my throne 13 times Sunday. I just have to find a specialist in Indiana that will treat all of my problems. Does anyone know if one in Indiana?
All of this is an exact copy of what is happening to me. Multiple surgeries for endo, partial hysterectomy in 2000, then in 2008 I had a mass that grew from my liver to my bladder and wrapped itself around the only overy I had left and twisted it. They calimed the mass was endometrosis, but the pathology report showed that it was not. Was not cancerous either. No estrogen for the endo to grow on any more, full hysterectomy, but they claim it is still there but cannot find it. I have endo all of my life and no one will listen that this pain is different. I have all of the copeing skills for endo, and not once was excessive gas and swelling all of the time a part of endometrosis. I do have adhesions to my intestines due to all of my surgeries.
Went to a GI specialist in 2009, have had multiple testing all have come back normal. He claims I have IBS, but I do not only swell after meals, I bloat even when I do not eat, a glass of water even gets me going. My stomach bruises from the inside out, was told that is not possible. They appear after a severe attack (belching, cramping and unable to stand up) and range from the size of an eraser top to the size of a 1/2 dollar. Another doctor told me to seek mental help. That was great.
Now I have a lot of constant swelling and pain above my belly button. Stomach is hard and swells up to 10 inches a day as soon as I get out of bed. Eyes are blurred and I cannot wear my contacts any more, my body rejects them and my eyes swell. Weight gain and streach marks from the daily swelling are wonderful. Gall bladder is a bit overfunctional (hyida scan @ 91%) but they refused to remove it as they thought it is just reacting to another underlying problem and I am too risky of a surgical patient. At times I get a rash, loss of hair, fatigue and my bones hurt. It is hard to walk. I can sleep for 17 hours and still want more.
I am only 40, and looking at hopefully another 40, I wish someone could help me turn in the right direction. I was supposed to go to Duke University for an evaluation, but it appears that many others have gone to the specialists and have not gotten an answer. I can't spend any more money for someone to tell me "I don't know".
OBGYN says see GI, GI says see Surgeon, Surgeon says see OBGYN. No one wants to take the time to try to fix it! Please help if you can.
Yessss i bloat like i look pregnant... i mean really really really bad....
I can send you some photos too, this has been going on for years and i can never wear any nice clothes...
long story short.. dont want you all to fall asleep half way through hahaha...
was hit in the middle of a zebra crossing 11 years ago... was not xrayed at hospital, spent 2 years seeing physio's until they realised my leg was broke!!!
anyway have had about 7 procedures, but even before this, i think from around the time i worked as a redcoat in butlins years ago.. i apparently have IBS..
anyway with so many ops and in the last year i have had 3 operations, am currently stuck with an infection because again the nhs dont do their job.. the nurse didnt clean the wound after the last operation which was just to remove metal work (following them breaking my thigh bone to realign my leg cus im too young for a sexy shinny new knee) anyway they take the metal out, MUA to try and get my leg straight (was fine before first op last year) and keyhole... i have had an infection for the last 2 months and am on my 3rd course of antibiotics... have taken fluxicillian and fucid acid and now erythromycin stearate and my gawd i can hardly breath with the bloating...
i seem to be ok then all of a sudden i look pregnant and i mean people actually give me a seat (which is funny cus they never help with using the crutch but looking 3 sizes bigger they do).. like you it feels like it starts under my boobs and is hard and painful and uncomfortable... i think its linked too food but what exactly i cant work out.. probably wheat and diary at least..
I am always like a block of ice, my hands and feet turn blue and have pins and needles..
so i go from being like ice to the soles of my feet burning and being unable to touch anything which to me is the most disabiliting thing of all... they say its CRPS, but i also have pain in my upper back which is more of a nerve thing...
now i could understand if the bloating started after all this and so many drugs but i have been like this for half my life...
like everyone else it really gets me down and no one quite believes me until they see me...
i feel like im a big mess and a like i come across as a hyprcondrac... gosh i cant spell but you know what i mean...
anyway ive taken photos to show the docs, along with the purple hands and burning feet.... but im young and i want my career, i wanna meet a nice guy and live life without so much pain and not being able to wear nice shoes or clothes.. i know my immune system is low but this isnt unusual for me :((
HAS ANYONE HEARD OF LND????
i think this is maybe the way forward... please google it... its for low immune and might well help fybromyacila and ibs... (im on a lot of morphine for the arthritis... but i am willing to cut it if this works...... i do believe this could be the answer for so many ...
anyway its 5.48 in the morning and im sitting here ready to give birth hahaha... but seriously any advice or anyone whos tried LDN please let me know and im happy to natter to anyone .. maybe by talking to eachother we actually get somewhere.....
thank you for reading :))))
bloody fed up :))
I can send you some photos too, this has been going on for years and i can never wear any nice clothes...
long story short.. dont want you all to fall asleep half way through hahaha...
was hit in the middle of a zebra crossing 11 years ago... was not xrayed at hospital, spent 2 years seeing physio's until they realised my leg was broke!!!
anyway have had about 7 procedures, but even before this, i think from around the time i worked as a redcoat in butlins years ago.. i apparently have IBS..
anyway with so many ops and in the last year i have had 3 operations, am currently stuck with an infection because again the nhs dont do their job.. the nurse didnt clean the wound after the last operation which was just to remove metal work (following them breaking my thigh bone to realign my leg cus im too young for a sexy shinny new knee) anyway they take the metal out, MUA to try and get my leg straight (was fine before first op last year) and keyhole... i have had an infection for the last 2 months and am on my 3rd course of antibiotics... have taken fluxicillian and fucid acid and now erythromycin stearate and my gawd i can hardly breath with the bloating...
i seem to be ok then all of a sudden i look pregnant and i mean people actually give me a seat (which is funny cus they never help with using the crutch but looking 3 sizes bigger they do).. like you it feels like it starts under my boobs and is hard and painful and uncomfortable... i think its linked too food but what exactly i cant work out.. probably wheat and diary at least..
I am always like a block of ice, my hands and feet turn blue and have pins and needles..
so i go from being like ice to the soles of my feet burning and being unable to touch anything which to me is the most disabiliting thing of all... they say its CRPS, but i also have pain in my upper back which is more of a nerve thing...
now i could understand if the bloating started after all this and so many drugs but i have been like this for half my life...
like everyone else it really gets me down and no one quite believes me until they see me...
i feel like im a big mess and a like i come across as a hyprcondrac... gosh i cant spell but you know what i mean...
anyway ive taken photos to show the docs, along with the purple hands and burning feet.... but im young and i want my career, i wanna meet a nice guy and live life without so much pain and not being able to wear nice shoes or clothes.. i know my immune system is low but this isnt unusual for me :((
HAS ANYONE HEARD OF LND????
i think this is maybe the way forward... please google it... its for low immune and might well help fybromyacila and ibs... (im on a lot of morphine for the arthritis... but i am willing to cut it if this works...... i do believe this could be the answer for so many ...
anyway its 5.48 in the morning and im sitting here ready to give birth hahaha... but seriously any advice or anyone whos tried LDN please let me know and im happy to natter to anyone .. maybe by talking to eachother we actually get somewhere.....
thank you for reading :))))
bloody fed up :))