Hello all and thank you for taking the time to review my posting and help me out. There must be others that are in my situation and have the same problems i have. I am in dire need of some help.
Basically, the story goes. I have been sick for about 3 years with consistent pain in my lower abdomin. I have been tested for EVERYTHING! I have had colonoscopy, endoscopy, hydrastat testing (I think that is how it is spelled), blood work, cat scan, X-Rays, I even swallowed a camera!! Every test comes back NEGATIVE!!! It is very frustrating. At least I know it isn't a tumor or anything serious, but this is getting ridiculous! I am nauseaus, tired, sore and in pain ALL the time. I have tried practially every medicine out there and nothing helps. I take fiber supplements, take vitamins, and anything else I can get my hands on that may help...lol
I am tired of being in pain and feeling horrible. This is effecting my relationship with my husband and my relationship with work. I don't ever want to go for I don't want to sit at a desk for 9 hours a day, but obviously I have to go. My co-workers are sympathetic but I know they are getting fed up with me contantly working form home or looking and feeling like crap while on the job.
I go to a GI docter, my GP, my gyno, and no one can figure out what is wrong with me. They even took out my Gall bladder, but that didn't help! Granted that did take away the stabbing pain I had but not the contant dull ache I always have. Basically, after they have doen all those tests, they are now saying IBS...which seems to me that it is the catch all diagnosis. If they don't know what it is, it is IBS.
It is so hard to verbalize this feeling. I use to say it is like gas pains times 100 but it is not always like that. Sometimes the pain feels like it is right under my skin, other times it is deep inside and does get relief (a bit) after a bowel movement. Not all the times though. The mornings seem to be the worst. I wake up or am woken up from the pain. I am doubled over in the fetal position until the painkillers kick in. Then I go on with my day. For the last 5 months I have been consistently taking painkillers about 3 - 4 times day and am now afraid that I am going to get / or already are addicted to them. My GI doctoer doesn't want me to take the painkillers for they can cause constipation, but they are the ONLY thing that gets rid of the pain and lets me get to work. I don't want to take painkillers all the time and would absolutely LOVE an option, but none has been suggested to me that work.
Please please please help me. I live in the CT area and currently do not have insurance. If you know anyone in the tri-state area that may specialize in this problem, please send me their info. My health insurance just expired for I was on Cobra. I am a project management consultant by day looking for a full time job with benefits. So I would need to work with the doctor, but at this point I am willing to put a second morgage on the house if someone can get rid of this pain....lol
Thank you for your help. I greatly appreciate any advice you can offer.
Lainie 33, I totally understand were you are coming from been there done that, I could go on and on with you all day but it would only be a repetition of your problems. It may sound strange but it some what helped me with the presistant agony in the gut. "Pepermint oil" I got it at the health food store and began taking it during those days when its just unbearable, Sore gut, cramping, the no relief after a bowl movement. Its not very expensive and may help till something else "break through" comes along. Sorry, I do feel you pain. Hope this may help a little.
HI, first off, Let me say that I am sorry to hear of your symptoms. This is all new to me, I have just joined this board. But I noted your posting right off due to the name ...
I too have been plagued with stomach/bowel symptoms for some time. I am recovering from a huge brain tumor, subsequent surgery and treatment afterward. Due to all the drastic medications I have had to take for the last two years, my stomach / bowel is feeling the effect. While it was great they saved my life, I wish I felt better too. You don't mention that you have diarrhea. Unfortunately that is one of my problems too. I sometimes have to take six imodium in the AM just to get going in the morning. I finally went back to the doctor and he prescribed tests plus something called Welchol. I took it and laid down and an hour later I am thinking, "Well, another medication with no relief" . Then I fell asleep for several hours.. I woke up, and right away I said to myself, "OMG, this is the first time in FOREVER that I can remember my stomach/bowels not bothering me or causing me pain' .. I hadn't even realized how badly my stomach was hurting me until it was taken entirely away! I feel like I have found the magic cure.
So, after feeling that way for an hour or so, I -= of course -- have to take my medication regime again (A total of 15 medications!, including PHENERGAN to fight my nausea frm so many of them), and I eat half a dozen Saltines to help them go down a little betrter. Within a couple of minutes, comes back the old pain and feeling.... Reading up on Bile Salt Diarrhea, this makes since, I have put something back in my stomach and since I cannot take the Welchol at the same time as my other medications, I don't have the help from it. And since I have had only one dose of it, i haven't built up any in my system.
But glory.... I see relief for me. I am lookng forward to being able to take the medication in an hour... and think I have found somthing to help me....
A moral to my looong note... Sometimes you just have to try this drug or that drug until they figure out what works for you. You know...your system isn't like anybody elses, and what is a cure for someone else, may not work for you. Don't lose hope, it can and will get better.
And something I kept saying to myself over the last two years of my (what I call) trials and tribulations, DON'T BE DISCOURAGED, IT CAN ALWAYS BE WORSE>.... LOL..... At times that I thought I couldn't go on, my wonderfully sweet hubby would remind me, well, considering the alternative baby (my gi ving up and dying ) , we should consider us lucky...
I know that sounds trite and condescending, but it does help to keep a good humor about the bad things that happen to us....
Thank you very much for your posts and your suggestions. I will try the peppermint oil and the Colocynthis 30c. I assume I can get both at a health foods store. Thank you for the suggestions and the empathy.
BrainTumrSvr - Thank you for your post as well. Your story has touched me. That is wonderful that you survived a brain tumor and keep going with a sense of humor and the support of your husband. You definitely have to have that, and I haven't lost that yet. I do realize my situation could be worse, but it just soooooooo frustrating not knowing what is wrong and always feeling horrible. But you do inspire me to not give up and keep searching. Thank you again for telling me your story and I wish you the best of luck with your recovery. Hopefully we all will find that "miracle" cure...lol
Lainie33: I’m not sure how much personal research you have done on IBS, but maybe I can save you some footsteps (Don’t every stop checking into new ideas) You know that IBS is a neurological disorder and that the research is limited towards it and even more so with the new administration, so WE are kind of on our own, not trying to depress you just the facts. I’ve spent countless hours surfing the net and talking fellow students, nurse practitioners, and a few Dr’s that would listen, and still nothing but dead ends. I have cornered ever employ at the local health food store to the point that they run and hide when they see me come in, but they have been more help than anyone else. Another “homeopathic” help that impressed me was “clostrium” this seems to help with the regeneration of intestinal cell along with some of the probiotics, (activia) has been a good one for me. Yea I know “I said that it is neurological” but this disorder triggers the intestinal cells into confusion and everything seems to get out of balance. I personally think when it gets to this point “these are the days it is unbearable”. Hang in there its going to get better, in other words you will learn to control “it” not it controlling you!! Beware there are a lot of gimmicks on the market and all they will do is steal your money. Think about it if these advertised “quote cures” were for real the Dr’s would scoop them up before they hit the market.
BrainTumrSvr: Impressive post, my wife is a nurse and I am a nursing student she works in ER and see’s lots of bad things every day and I hear about then on a daily basis. You don’t know how good it makes us feel to hear a survivor story this is why we perused this field in the first place, to help people. The reason that I am responding to you is, I am curious did your IBS begin after you tumor operation? Since IBS is neuro I wonder if there is some sort of link? You hang in there it makes me tingle to hear a story like this.
googlefreak1 - Thank you for the info and the suggestion. I actually was not aware that this is a neurological disorder. None of my doctors told me that... I was even going to a neurologist for migraines and he didn't say anything about the problems I was having.
Thanx for your suggestions. I will hit the health food store this week and try some of your suggestions.
Is there any homeopathic remedies that help with energy? I know that if I started to work out again, I would probably start to feel a little better, but I have absolutely no energy to get up and work out. Any suggestions for that would be greatly appreciated as well.
Lainie 33 Hi hope your having a good day “minimal pain” the best thing to do is get to the health food store, find someone who will listen probably a “Nutritionist” there is usually one around and bend their ear!! that’s what they are there for, and they can probably suggest something for you energy needs.(I just take a multivitamin seems to help a lot) Exercise will dramatically help you situation, I will try to explain the reason for your condition “IBS’. You probably know how your gut works but if not, what happens is as your food is propelled through your digestive system through Peristalsis (the rhythmic contraction of smooth muscles to propel contents through the digestive tract.) your food is moved with a combination of segmentation and Peristalsis. when the food gets to a non specific place in the bowel the sync gets thrown off and instead of a one way direction it start going back the other way “back and forth” this is were the cramping comes in. With the back and forth movement the food “chyme” can go either way hard or soft, (due to many different factors this can get very in-depth so I’ll make it brief). This can explain for the hard stools that are sticky, ribbon or pencil shaped, well you getting the picture……… So fiber does help there are two types water soluble and water insoluble, the jury is still out on which is the best, so you will need to determine that for yourself through trill and era (everyone is different). Whatever you do or try, give it a reasonable amount of time to see if it’s going to work for you. Keep a diary of what you eat and your pain status “Everyday” and you will soon figure out your trigger foods. Mine are chocolate, caffeine, milk, beans and did I say CHOCOLATE my favorite. Oh well pain or pleasure what will it be? Please keep me posted and if you hear of a real cure that works 100% of the time YOU BETTER LET ME KNOW. Oh yea try to get away from the pain killers they make the constipation worse. Take care and good Luck!!
My wish would be to be able to answer FINE when someone asks me how I am. To wake up in the morning and feel good...not nauseous or crampy or just bleh. To have something other than the toilet as my best friend....
I too suffer from intense pain in my lower abdomen. It feels like labor pains and I actually do lamaze breathing thru it. My doc told me that most likely my intestines are twisting when I feel that pain. When I had a colonoscopy done, I damn near jumped off the table from the pain when he hit a twist.
I found that avoiding most raw fruits and veggies has helped but I think the best thing I ever did was start taking acacia fiber daily. I have IBS-D so the fiber absorbs a lot of the liquid but most importantly, gives my intestines something to squeeze upon. Mind you, I've tried almost every other brand of fiber out there with no success, most of them made my D worse.
Doctors are no help, its boards like these that you get info and most importantly, someone that listens and understands your problem, not only what its doing to you physically, but emotionally.
I hope you find something that starts easing the pain.
p.s. the next time a big wall of pain just cripples you, try 'blowing up your tummy'....meaning inhale deeply so your abdomen rises/inflates and hold it a few seconds. I find that sometimes helps.
Any of you try a probotic? It helps to calm the intestines and equalize the good and bad bacteria. I use Align which you can purchase at a drug store.
I was going through the same symptoms but thanks to align it has gooten a hundred percent better. Good luck to all and I can only wish Align can work this good for you too. Linda
Googlefreak - Thanx for the information. I didn't really know what was going on. Actually I am not sure if it is actually IBS, because my understanding is that there is not a definitive test that says "you have IBS". My doctor said it is most likely IBS bbecause I was tested for everything else and they all came back negative.
I know I need to write everything down, but it is so hard to do so. I always forget for I get so busy at work, then I am trying to remember what I ate during the whole day... and sometimes the next day. I did try it before but it didn't work out very well. I am trying to take the fiber supplements like benefiber to see if that helps. I wasn't able to get to the health food store this weekend, for I was sick with the stomache bug that is going around. On top of everything else I am dealing with I get sick with the stomache bug...lol Just put me in the HOME!! I tell you..
As for the painkillers, I know they cause more constipation, but right now the cons outweigh the pros of stopping them. I don't have insurance right now and instead of taking 5 other meds I am just taking the one painkiller to help until I get more insurance. Once I get insurance, I will be weaning myself off the painkillers.
Seabell - Thank you for your advice about the fiber and the breathing technique. I will try that next time. I feel the same way. I actually jave to force myself to be happy and cheerful while at work so people don't get a bad impression of me. I will not be the one that is always sick. Sometimes that is much harder than you would think. Dealing with this pain and smiling and participating in meetings is not fun. It is helpful though to have boards like this. Knowing I am not the only one dealing with this is reassuring. I was getting worried when they couldn't figure out what was wrong with me.
Linda in NJ - I actually have been taking Align for the last few months and it hasn't really helped. Don't know why I am still taking it...lol. I guess I am afraid that if I stop it will get worse. lol. I have taken so many things that I don't even know anymore what works.
Thanx again everyone for your advice. Anyone else that has any advice, please feel free to comment.
I am now going through the same thing you’re going through and have been for two years now. They have also taken my gallbladder out and it helped a little too, but I still have pain. I did realize that the pain med I was on was not helping. I was taking Hydrocodone. It helped with the pain but it also made it worse. I stop taking it and switched over to ultram. The pain wasn’t so severe after the switch. I still have pain and nausea a lot. The GI said I have IBS and Crohn’s. The stupid thing is they can’t find where the Crohn’s is. So is it really Crohn’s. The GI said my blood was consistent with other Crohn’s patient’s blood. I have times where I can’t work for two days because I get so sick and in so much pain. I haven’t done that camera thing because my insurance will not pay for it. Are you taking a pain med that could be to strong for your stomach to handle? And every time I get a stomach bug on top of what I have, I end up at the ER. The doctors and nurses know me up there now lol.
Hi - It's amazing and kinda reassuring that I am not the only one dealing with these issues. It's frustrating though that they can't figure out what is wrong with us. I have been taking oxycodone (which is a little stonger than Hydrocodone and doesn't have the aspirin in it). I know this doesn't help with the constipation, but it helps with the pain so for now I have to continue. If I take alot of aspirin I know that effects my stomache. For a while I was taking Ultrasept and/or Ultram, but those have now stopped helping. And without insurance, I am left to only the painkillers and holistic treatments. They tested me for Crohn's as well but they say that came back negative. It is just so frustrating not knowing and feeling this way all the time.
Thanx for your comment and good luck with your pain!
Lainie33 Have you tried a colon cleanse? If you haven't its probably not the horrible picture you have in your mind. When I got to this point I thought "I don't have anything to lose" Whats going to change? My relationship with the toilet! When I tried the colon cleanse this is where I finally got some control of my IBS. Most of the cleanses suggest that you eat only organic during the cleanse. I know its more EXPENSIVE, but its probably cheaper than 1 Dr visit, and for me it was worth the $26 for the cleanse and $75 of organic food. I probably sound like a "PAID customer" but this really made me feel better and more energy too. Good luck and give it some serious thought.
Hi Google Freak - I have had colonoscopys and endoscopys but I haven't tried the "colon cleanse" you do on your own. They did make me drink that icky stuff and of course the day before the procedure is the worst... Maybe I will think about the colon cleanse. Is it the same type of activities as the day before the colonscopy? I don't know much about it, don't you need to be near a toilet and fast when you do one of these? or I guess eat organically as you suggested...