Eight years up shit creek without a paddle or a map

[Confused Expat]

Hey all, this is my first time joining a forum and not just trolling the Internet for mortality statistics on IBD and so it is a really great feeling to be able to actually become involved with other people who are suffering through this shit (...). While I may not be able to offer as much advice as I would like to, I will do my best to contribute to the forum, rather than just asking for help.

This said, I need help.

I have had symptoms of potentially serious gut trouble for about eight years now. Yep. And all that time without a diagnosis or md boy is you crazy? No. Just uninsured and poor. While my guess is there are a lot of ibd ibs sufferers out there in the same canoe, you wouldn't know it by looking online. I've only found like one or two others posting about their battle with ibd without medicine. Pretty much the entirety of ibd sufferers stories are all the same in this one regard: lists of symptoms are invariably followed by lists of medications tried. This has not been my lot, unfortunately, and it is the main thrust of my question.

Briefly, the trouble started eight years ago. I'd just moved to a new state and was really stressed what with supporting myself leaving behind family and friends having no phone no Internet (had to visit library) and so on. I was working in fast food to get through the university I'd moved out to attend. Then the trouble started. Painful diarrhea. Cramps. It was bad at first, eventually escalating up to like four or five times a day and I couldn't walk anywhere without having to limp into a bathroom after like twenty minutes.

Then a girlfriend got me into healthy living and I went organic (much as budget would allow, haha) and started putting money aside for probiotics. Began doing martial arts. Really turned things around, and was at like maybe one or two times a day, not often painful. Could walk again as far as needed!

Eventually I got my degree (yay!) and moved to China! It was a hell of a move...for a boy coming from Nowhere, Midwest State, pop. 2300 to Beijing China, pop. 22,000,000. I was exciting, and stressful. Got to eating a lot of street vendor food (cheapest) and spicy food (tastiest) and GUESS WHAT HAPPENED!?

So I have been working on managing things again. I'm functional--very lucky in this regard--but still start every day waking up with gut cramps and gotta poo. It's rarely solid but not watery either.

Now I will describe my worst symptoms. This is not something I ever thought I'd be doing online but then we're all a blessed bunch, aren't we. Worst case would be cramps much of the day in lower bowel, painful D maybe four, at most six times a day. No "noticeable" blood but dark stools on occasion. Yellowish (rapid transit) on most other occasions. I have had blood droplets on tp from time to time but with butt pain I think it could as easily be hemmies (again, undiagnosed) No red toilet bowls so far. But again, sharply painful liquid poo that is on occasion dark.

Once was so ill I got anemic and lightheaded. Got a blood test and my lymphocyte levels were really low but they wouldn't tell me what this mean unless I payed up (this was back in the land of the Free). It lasted a few days. Also back in the land of the Free, I visited a clinic at my university, and they took stool samples and said I had a high sed rate (I speculate this coulda also been psoriasis...my dry intcing flaking horrid feet are something terrible but again, undiagnosed).

Now I live in China. We all know about "after eight to ten years" so guess what's on my mind all the time? I have tried a local md but not much effect. Still gonna try others. No insurance. And getting it over here is...not that easy. I can't just up and go back to the us either. First, my MA in English literature is effing useless over there. Second, I am in love with a wonderful and patient Chinese woman who really has no intention of going stateside in the near future (and to think how many friends chided me that she just wanted a green card...)

So here it is guys. I have no md. I have problems. I suspect it's ibd not ibs cuz my grandpa has colitis (kock pouch for like fifty years that's now coming loose and giving him nightmarish hassle) and my uncle has what his dr said was the worst case of crohns he'd ever seen. This coupled with a former girlfriend's two cousins both having boyfriends with colitis convinced me a few years back that this is likely what I've got. I even smoked cigs from time to time and, while it does on occasion offer noticeable rapid relief, it at other times seems to hurt or just do nothing at all.

My present (Chinese) girlfriends parents had a divorce and over here that just doesn't happen. So she is understandably really shaken up by it (divorce in itself, apart from the norms and mores over here) and from time to time asks me, in her delicate and unprodding way, if I think we will always be together. I assure her that I will NEVER leave her. That I will spend my life loving her only and being there for her. Then she goes to bed and I lay there with cramps often as not, contemplating how long I can reasonably expect to live with my bowel habits. But where do I go and what can I do? I guess I'm here cuz I'm lost. Honestly, I have felt so hopeless I'm used to it. Last year I had an episode of healthy completely problem free bowels I can remember probably as vividly as most people remember a bout of what I consider normal. I have had to begin taking antidepressants (god knows how Ill refill them here but I'm working on it) because--not to sound dramatic but to paint as clearly as possible--I was making lists.

I am in hell. I don't know what to do.

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear you are still having so many problems with the tum

Just to confirm you are working in Beijing? Do they have free clinics or do you have to have insurance? I would really hope there would be a way that you could see a doc and have some testing done so you can get a definitive answer in what is going on - especially with your family history. You certainly shouldn't have to just live with these symptoms.

There is a lot of helpful info and support here so do have a good look around, the diet and sups forum may help with at least things in that area you can try for now to help with symptoms and our undiagnosed forum also has a great bunch here to have a chat with.

I will be keeping fingers crossed you can be getting to a doc soon. Pls keep us updated on how you are doing.

AB
xx

 

[dannysmom]

Hi. Most people with IBD do require a doctor's care and treatment. You do not want things to get too out of control. What can you do without a doctor? .... Some people do have very positive results from an elemental (liquid) diet. (But this can be VERY expensive). Some people also have positive results from the Specific Carbohydrate Diet (SCD). This forum has subforums for treament and diets that may be helpful. I hope you can get some testing done soon. Good luck!

 

[Tenacity]

Welcome aboard! Sorry to hear about the situation you find yourself in. Is it possible for you to obtain foreign medical care before your diagnosis. I had a look online for you, and found that if you are able to get foreign medical care through a company like Blue Cross Blue Shield, that there are a list of hospitals over there that will treat you. Here is the link:

http://www.imperialtours.net/china_health.htm

In the meantime, the best advice I can give you, without the use of any medication, is to follow an elemental diet. Go online and look up Peptamen 1.5 made by Nestle - and ask if they make something comparable to that over there. Just drink (slowly and a little watered down) about 8 of these drinks every day - depending on the calories - just add up how much you need per day based on your weight - and that will tell you how many to drink. There are some great books out there about elemental diets - and I think we also have a section of this forum discussing this. Research has shown that an elemental diet can be just as effective as prednisone.

Lastly, I would suggest when you get back here, to get on an insurance plan asap before you get diagnosed with any illness. Some insurance plans cover children up to the age of 27 - do your parents have insurance?

 

[723crossroads]

Hey all, this is my first time joining a forum and not just trolling the Internet for mortality statistics on IBD and so it is a really great feeling to be able to actually become involved with other people who are suffering through this shit (...). While I may not be able to offer as much advice as I would like to, I will do my best to contribute to the forum, rather than just asking for help.

This said, I need help.

I have had symptoms of potentially serious gut trouble for about eight years now. Yep. And all that time without a diagnosis or md boy is you crazy? No. Just uninsured and poor. While my guess is there are a lot of ibd ibs sufferers out there in the same canoe, you wouldn't know it by looking online. I've only found like one or two others posting about their battle with ibd without medicine. Pretty much the entirety of ibd sufferers stories are all the same in this one regard: lists of symptoms are invariably followed by lists of medications tried. This has not been my lot, unfortunately, and it is the main thrust of my question.

Briefly, the trouble started eight years ago. I'd just moved to a new state and was really stressed what with supporting myself leaving behind family and friends having no phone no Internet (had to visit library) and so on. I was working in fast food to get through the university I'd moved out to attend. Then the trouble started. Painful diarrhea. Cramps. It was bad at first, eventually escalating up to like four or five times a day and I couldn't walk anywhere without having to limp into a bathroom after like twenty minutes.

Then a girlfriend got me into healthy living and I went organic (much as budget would allow, haha) and started putting money aside for probiotics. Began doing martial arts. Really turned things around, and was at like maybe one or two times a day, not often painful. Could walk again as far as needed!

Eventually I got my degree (yay!) and moved to China! It was a hell of a move...for a boy coming from Nowhere, Midwest State, pop. 2300 to Beijing China, pop. 22,000,000. I was exciting, and stressful. Got to eating a lot of street vendor food (cheapest) and spicy food (tastiest) and GUESS WHAT HAPPENED!?

So I have been working on managing things again. I'm functional--very lucky in this regard--but still start every day waking up with gut cramps and gotta poo. It's rarely solid but not watery either.

Now I will describe my worst symptoms. This is not something I ever thought I'd be doing online but then we're all a blessed bunch, aren't we. Worst case would be cramps much of the day in lower bowel, painful D maybe four, at most six times a day. No "noticeable" blood but dark stools on occasion. Yellowish (rapid transit) on most other occasions. I have had blood droplets on tp from time to time but with butt pain I think it could as easily be hemmies (again, undiagnosed) No red toilet bowls so far. But again, sharply painful liquid poo that is on occasion dark.

Once was so ill I got anemic and lightheaded. Got a blood test and my lymphocyte levels were really low but they wouldn't tell me what this mean unless I payed up (this was back in the land of the Free). It lasted a few days. Also back in the land of the Free, I visited a clinic at my university, and they took stool samples and said I had a high sed rate (I speculate this coulda also been psoriasis...my dry intcing flaking horrid feet are something terrible but again, undiagnosed).

Now I live in China. We all know about "after eight to ten years" so guess what's on my mind all the time? I have tried a local md but not much effect. Still gonna try others. No insurance. And getting it over here is...not that easy. I can't just up and go back to the us either. First, my MA in English literature is effing useless over there. Second, I am in love with a wonderful and patient Chinese woman who really has no intention of going stateside in the near future (and to think how many friends chided me that she just wanted a green card...)

So here it is guys. I have no md. I have problems. I suspect it's ibd not ibs cuz my grandpa has colitis (kock pouch for like fifty years that's now coming loose and giving him nightmarish hassle) and my uncle has what his dr said was the worst case of crohns he'd ever seen. This coupled with a former girlfriend's two cousins both having boyfriends with colitis convinced me a few years back that this is likely what I've got. I even smoked cigs from time to time and, while it does on occasion offer noticeable rapid relief, it at other times seems to hurt or just do nothing at all.

My present (Chinese) girlfriends parents had a divorce and over here that just doesn't happen. So she is understandably really shaken up by it (divorce in itself, apart from the norms and mores over here) and from time to time asks me, in her delicate and unprodding way, if I think we will always be together. I assure her that I will NEVER leave her. That I will spend my life loving her only and being there for her. Then she goes to bed and I lay there with cramps often as not, contemplating how long I can reasonably expect to live with my bowel habits. But where do I go and what can I do? I guess I'm here cuz I'm lost. Honestly, I have felt so hopeless I'm used to it. Last year I had an episode of healthy completely problem free bowels I can remember probably as vividly as most people remember a bout of what I consider normal. I have had to begin taking antidepressants (god knows how Ill refill them here but I'm working on it) because--not to sound dramatic but to paint as clearly as possible--I was making lists.

I am in hell. I don't know what to do.

Hello,

I am very sorry for what you are going through. I just want to tell you about something I was given by my Dr. that has proven to be a miracle for many people for diarrhea. It was made for people with high cholesterol, but they discovered that it cures diarrhea in crohn's patients and colitis. I have crohns. I take it, you mix it with water, it is a powder and drink it. It forms a stool like you had when you were a kid. As long as I use it everyday, I am free of the runs completely. Go to healingwell.com Look up cholesterymine for diarrhea and read all the success stories. I don't think it would be that expensive. So, I hope you can try it. Questran is the real name. Cholesterymine is the generic which I use.

 

[Confused Expat]

Thank you all for your quick and very thoughtful replies. It is a tremendous relief not to be alone in this anymore. I followed up the links you guys posted. I didn't know there was a such thing as an elemental diet, but it makes sense! Unfortunately, I can't get something like that over here. I don't think I can get Quintan either. I use Imodium --they call it yimongting

This morning I had a pretty bad attack. Painful as hell, a couple of times. I chuffed down a half a dozen cigarettes and the pain went away. Which for me is as good as a dx of colitis.

I really don't know what to do now. I told my close friend, a local, about my problem. I told him I need a doctor. He wants me to see a traditional medicine specialist. I will do it, but...I have my reservations.

I feel like my big adventure in china is coming to an end. Like I may have to just fly back and take out medical loans and get an operation. I don't even know how I will tell my girlfriend this. My life is collapsing around me. Everything I have worked so hard for is being destroyed...by my effing asshole!!

I don't even know how to begin with a special diet. Shopping here is so hard with the language barrier. My gf is as busy as I am and can't help. The worst part is that this city is so expensive if I go back to America to be an indebted pauper, I won't be able to help my gf and shell have to live in a cracker box underground...u don't even wanna know the kinda places that the unweallthy have to live in over here.

A while ago I thought my situation must be common. There's enough people it just has to pop up regularly. Now I'm not so sure. Its virtually tailor made so the whole thing topples no matter what I do.

I'm sorry for all the whining. I have honestly reached what I think is one of the last years of my life and nowhere I turn nothing I do can change it. I believe that I am lost and I guess I just don't want to be alone when it happens. I've suffered through so much of this shit in solitude. I'm really sorry.

I think it's just knowing that here, people who have suffered through this (and in many cases I don't doubt much worse, though I don't know how) are hearing me, and understanding it. So I don't sound like a whack job when I say that my shit makes me want to kill myself.

But I am trying. I am "reaching out" to anyone now who can give me advice. I am trying to be as proactive as I can. I am just afraid that by now, after nine years untreated, there isn't much I can do. Pretty sure they're just going to rip the damn thing out and give me a bag for life. Would go for the jpouch but without insurance I don't imagine I will have any choice in the aesthetic result of the operation that will save my life.

I have visions of my gf back here slaving away eighty hours a week just to have a room and food while I'm getting a colostomy bag in the states and being told I can't ever leave again cuz I had a disease or am in too much debt. This shit is so tragic it's funny. Enough melodrama for a good Almodovár film.

If I could just get insurance, and see a doctor. Seems like a fair thing to ask. I've paid my taxes, I never stole etc etc.

Cuz right now I really think I've arrived at the tail end of my life, and it's just so pathetic it makes me sick (...)

 

[Ckt]

Hi confused expat and welcome to this wonderful forum! You are really going through the mill and it's doubly hard on unfamiliar ground. I kind of went through a similar experience first while living in India then Africa working. The pain was exquisite at times..fevers and I thought it was some kind of dysentery. Not so. If you can't get treatment there I would urge you to fly home and get treatment. Federal law mandates that anyone showing up I the er is seen. If you can, go to a unviserity hospital because they usually have the most up to date treatments. If you do need surgery, you cannot be denied based on income in the states. It's against the law. And uni hospitals also have the most innovative surgeries. Believe me.. I know. I have worked at university hospitals most of my nursing career and I've been a patient plenty of times in them. I've had 6 bowel resections due to crohns and obstructions.
I'm actually HOPING for an ostomy at this point! And I am on disability but traveling 5 hours to an IBD clinic to lobby for this because I continue to have a fairly miserable and limited quality of life.
My point being..you don't have to wait until you bust a gut. And it can happen. Please try everything you can to seek medical care. You won't be much good to your gf dead. And I really believe life can be so much better with proper treatment.
Take care of yourself!!cindy

 

[Tenacity]

I agree with Cindy - you need to come back home and get medical care. Where does your family live? Where is the nearest major medical center to them? Sounds as though you cannot bear the thought of leaving your girlfriend there. Can you get married, and bring her back with you? Just a thought - although I'm sure she has family there too. I am sure they want the best for her too though.

Either way, you really do need to come back and get yourself treated. You cannot continue as you are - I would come back home asap - bring your girlfriend with you.

In the meantime - please print out the Peptamen 1.5 information, and give it to your girlfriend.

http://www.nestle-nutrition.com/Products/Family.aspx?FamilyId=E82AB1D6-9D03-40AC-BDF0-96C8895A0C59

Here is another drink - print this one out too:

http://www.nutricia.co.uk/products/view/crohn_disease/elemental_028_extra_liquid

Tell her to go to the pharmacy, hospital or medical suppliers over there and ask if they make anything comparable. It is called an elemental drink. There is nothing to it. If you can get hold of any of these drinks, you just stop eating food, and drink a can of these drinks every few hours throughout the day - until you meet your calorie needs.

How old are you? I'm asking for insurance purposes.