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IBS/All in your head... driving me crazy!

I am so glad to find this site, and to discover that I am not alone! I have always had digestive issues since I can remember. As a young child I was always constipated and gassy and always complained of tummy-aches, but was always accused of just exaggerating and trying to get attention, because, after all, there was no fever, vomiting, etc. As I got older the bloating and gas got worse and sometimes there was diarhia sometimes constipation. I have also had other strange symptoms, like being extremely uncoordinated and sometimes light-headed. Sometimes when walking, or even just standing still I start staggering like I am drunk or something for no reason (I don't drink... that would probably kill me!) Symptoms come and go, but as I get older, they are mostly runny stools, severe bloating, gas, passing blood, passing mucus, gall-stones (a few small ones that don't seem to cause problems, and gall bladder is of normal size and functions fine) and sometimes bowl incontinence. several years ago, I went through a year with terrible constipation and even laxatives didn't help sometimes... this lasted over a year. Then I was somewhat ok for about 7 yrs, although I had very loose stools and occasionally passed blood. Then, back in 2009 everything went downhill... at 42 yrs old I was pregnant with my now 4yr old son. At first the pregnancy was actually really an easy one, but when I was about 7 months along, I got the worst, watery diahrea ever out of nowhere, and for the rest of the pregnancy and beyond, I was running to the toilet at least every half hour and couldn't even leave the house anymore. I was constantly in ER because I was so dehydrated and it is a miracle my son was born healthy, only 1 week early. I was told no tests could be done until he was born and that it was nerves, or all in my head, or hormones! After he was born I was still told the same thing, and matters did not get any better. My doctor told me maybe I had IBS, or should see a psychiatrist... and this is after I told her I had a family history of colitis and colon cancer! I changed doctors, and was told the same thing. Eventually, I ended up in ER because I was passing so much blood I thought I was going to bleed to death and had a lot of pain from my bloated gut... this is when I had an ultrasound and was told I had gall-stones and that was the cause. I did research on gall bladder disease, and decided that it wasn't likely that gall stones were causing all of these problems. I was really upset, because I kept telling these doctors about my family history (my dad is a colon cancer survivor and my grandmother had colitis and had her colon removed, and I have had other family members with colitis as well) and they seemed to think I didn't need any further testing. They wanted to take my gall bladder out but I didn't trust them and didn't have the surgery. I changed doctors again and finally, I had one who agreed that what I was experiencing definately was not from gall stones. I had a colonoscopy and tested for several forms of colitis, Crohn's, and cancer. I was told there were no polyps, no cancer, no colitis, no Crohn's... but there was lots of scar tissue, and a couple of ulcers which appeared to be healing. I was also tested for some types of parasites... all negative there too. I am so confused!!! I tried to eat gluten-free and at first I thought it was helping a little (I was still having bathroom issues, but not passing mucus ay more) but now I am getting worse again. I have to stay home most of the time, because if I have to pas gas, I had better be on the toilet... I am always having to go... at least 6 or 7 times a day, which is always soft or runny even. Sometimes I feel like I am about to have an accident and run to the bathroom and strain for 15 minutes, just to pass watery stool and blood. I also notice that about 3 to 5 hrs after I eat a meal, I develop a lump in the lower right quadrant which goes away about an hour later. I mentioned this to my doctor, who shrugged his shoulders and said "so?" like I was crazy, or exaggerating or something!!! I don't feel nauseated, and I don't puke, but I get sooo bloated... one time someone thought I was pregnant again and I was so mad!!! When my gut is empty, I have a 6-pack, so this is really awful! I have tried several meds, all of which are supposed to slow the gut down, but they make me worse... not better. Lately I have been trying a gluten free diet, which seemed to work at first, but now it isn't. Now I self medicate with tons of really strong coffee because it makes everything go through faster, offering quicker relief as I only feel ok when there is nothing in my gut. I cant even hold a job because I spend most of my time running to the bathroom, or calling in sick because I cant leave the house in case of an embarrassing accident. The worse part is that I have a 4yr old son who is everything to me, and to him I am probably just a sick, crabby mommy instead of the fun mom I would rather be. I used to have a health plan provided for by Medicaid, but I don't any longer because of all of this crazy health care reform and this affordable health care stuff... which is not affordable at all when you can barely make enough to meet basic expenses. Now no further testing can be done without insurance... I don't know what to do... I am the only one my son has to look after him, and I don't have support of family... all my friends think it is "in my head because I don't look sick" and they say I am just lazy. I don't even talk to them anymore because I am so disgusted with that attitude. I am so worried about my son and what will happen to him if something happens to me... I am so depressed, and don't know what to do anymore!
 
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Wow....I am so sorry. There are so many things I want to say...you need to find a GI doc...I don't know what state you live in but I'm hopeful you can find some help with insurance. I agree with you about the healthcare "reform"...it's a joke. I had excellent ins when I was employed that was affordable but then had to pay huge amount for COBRA now have blue shield which is over a thousand a month...but for two months I didn't have ins n my meds cost about that so it's worth it.
What meds are you on?
I totally understand the urgency and not wanting to leave the house...I take at least two Imodium if I'm going somewhere n just pray they work.
I'm sorry about your friends not supporting you. I don't know what I would do without my family n friends...I hope you find someone to help n support you. This is hard enough without people telling you it is all in your head. I had a few docs - at the beginning tell me I needed antidepressant drugs....I told them I wasn't depressed I was sick!! Then when they sent me to GI doc who wasn't a lazy jerk they ate their words and I changed doctors. Having had worked with doctors I know there are some very good ones and some that just want to give you a drug n send you away?
We'll I hope you find help. I think you finding this site is a good start...I just found it too and am loving it! Good luck to you. And your son !
 
Wow....I am so sorry. There are so many things I want to say...you need to find a GI doc...I don't know what state you live in but I'm hopeful you can find some help with insurance. I agree with you about the healthcare "reform"...it's a joke. I had excellent ins when I was employed that was affordable but then had to pay huge amount for COBRA now have blue shield which is over a thousand a month...but for two months I didn't have ins n my meds cost about that so it's worth it.
What meds are you on?
I totally understand the urgency and not wanting to leave the house...I take at least two Imodium if I'm going somewhere n just pray they work.
I'm sorry about your friends not supporting you. I don't know what I would do without my family n friends...I hope you find someone to help n support you. This is hard enough without people telling you it is all in your head. I had a few docs - at the beginning tell me I needed antidepressant drugs....I told them I wasn't depressed I was sick!! Then when they sent me to GI doc who wasn't a lazy jerk they ate their words and I changed doctors. Having had worked with doctors I know there are some very good ones and some that just want to give you a drug n send you away?
We'll I hope you find help. I think you finding this site is a good start...I just found it too and am loving it! Good luck to you. And your son !
Bentyl was one of them, and the other I am not sure... I stopped taking them because the side effects were terrible for me, and they did nothing to help the symptoms I have. The one thing that seems to be the most effective is the gluten-free diet, except the pasta I ate last night made me feel like I had a rock in my tummy. I have been doing this for about a week... no more blood or mucus in stool or as much running to bathroom... I can sleep through the night now. I am actually having solid stools too, but they are hard to pass... probably because I haven't had them in so long
 
When you aren't hungry but know you need to eat you might try Ensure...I drink at least one a day because I feel hungry then try to eat and about two bites in feel like puking...or do puke. This is so hard. I'm feeling sad for you because you need love and support...I think that is what gets us through. Thank God you have your son! I also have a son but he is 21...almost 22!!! I can't believe he is so old :). I have a daughter, also, who is 23! I can't imagine how scared I would be if I was this sick when they were 4 :(...I'm sorry.

Is there a doc you have who you can communicate with by phone? Then it wouldn't cost anything....also I have a friend who has MS n she doesn't have insurance but she calls the doc office n tells them n they only charge her 40-60 dollars per office visit...even a neurologist! She also goes online to drug companies n gets coupons for her meds saving lots of money...worth a try. You really need to see a good doc..
 
I know a doctor who is actually a bariatric surgeon and a friend who told me to try bariatric advantage high protein meal replacement because it is for surgery patients, so it is gentle on the tummy... and gluten free. He gave me lots of free samples and I can stomach it well. I am going to keep trying the gluten free diet for a while... yesterday I get pretty bad and then realized it was after chewing some gum that had a gluten containing ingredient, so maybe I am on the right track.... I have a daughter too who is 18 and off to college, and an x-husband who has been supportive, but he has PKD and dealing with kidney failure, dialysis, and not doing well at all, so he has his own battles to face. Thank God for our kids... they are the best support we have:) And the pets too... my cat always knows when I need her there for comfort!
 

Honey

Moderator
Staff member
Hi there Zoethecat,
Welcome. So sorry you are having all These Problems. I was Not diagnosed correctly until 3 years ago with Crohns, so I can empathise with you. Yes, people often go by appearance and See you as well, when really you are struggling. Try and eliminate foods that aggravate your problems. For me it cheesey sauces. I hope you find a sympathetic doctor who will really Listen to you.This site is good for the support you need. Keep in touch. I hope you start to feel much better soon.
 

Kev

Senior Member
I had a 'mystery' illness... decades ago.. Local docs back home couldn't determine what it was... despite a sigmoid scope AND a barium x-ray. I was put on hi dose steroid enemas for a month and a half... and it all went away. Decades later, I was again having issues... and another sigmoid scope ... only this time by the head honcho, the best in the entire Atlantic region.. the guy who trained local GI's or GI wannabes at the university. He saw my old scar tissue... but no current indications (at that time) of any active disease. He pegged pretty much to the year when these scars originated... right on the money..... but missed completely the early stages (including gall bladder, pancreatitis AND pancreatic cysts)... Within 3 months, I was back (after showing my GP photos of the amount of blood I was losing) and the honcho was performing a colonoscopy. Then he scheduled me for 'urgent' (not emergency) surgery... and he performed a resection, cut 1 1/2 feet out of me, and told me I was cured. Another scope 3 months later confirmed his viewpoint... then within days it started again, minor bleeding, steadily getting worse, and another scope 3 months later showed full involvement... every inch affected except for my incision... Anyway, my point? You aren't alone... I 'believe' gall bladder issues stem from inflammation ,etc, in/around where the bile duct pipes into the GI tract... they never found any sign of gall stones (even microscopic ones) when they took out mine. But it is hard to get doctors to look for zebras, not horses, when they hear hoof beats, you know?
And if the best can be fooled by this disease, what can you do? Doctors are only human (he offered me a very humble and sincere apology)... I blame it on the devious nature of this disease. And, the thing of it is, EVEN when they finally admit 'we' were right, what do we win? A diagnosis of an 'incurable' disease that nobody wants to discuss publically.

Hang in there... get your diagnosis... then get a treatment that works for you. And if you are told by anyone "It is all in your head"... my suggested response would be (mind you, I'm crazy) "Well, I can see that being the correct diagnosis in your case... if you had it... because EVERYONE knows you have shit for brains!" Hey, if you want to fight of this darn disease, you might as well adopt a fighting spirit...
 
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