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203342 tn?1328737207

What could be wrong with me?

This will be my last post. I tried to post something a couple of times before and got no response. I guess maybe no one else knows what could be wrong with me. I was just hoping someone out there might have an idea.
I can't seem to get any kind of diagnosis. The doctors are stumped. Now they're ready to send me to see a GI specialist and a dietician. I can't seem to eat anything without getting diarhea. I don't know anymore what will trigger it. It doesn't seem to matter if it's healthy foods or not so healthy.
I've always been healthy and could eat anything I wanted until a few years ago. It all seemed to go downhill after an emergency appendectomy 4 years ago. They saw a small mass in my small intestines and wanted to keep an eye on it. Fast forward 3 years later and I'm doubled over in pain. The see that the mass has grown and I had it removed last Summer. After that I felt great! They biopsied it and said they thought it was Crohns. They sent it for a second opinion and they too said Crohns. Then I get a colonoscopy and endoscopy last Winter and even though the saw a lot of inflamation and some ulcers they said no Crohns. The blood test said no Crohns. Then what the heck is it?
I've had diarhea off and on since then but not too bad. Now, this last month it's been worse. I've been tested for Celiac, been sent to an allergist. They don't know what's wrong with me. I have a feeling it's diet related but can't quite figure out what I'm reacting to then because it's every day. I don't understand why I can't seem to get any kind of diagnosis and why they can't figure out how to help me.
I am a little nervous about all my gut problems too because my grandmother had colon cancer. So I want to be careful. Does anyone have any idea what could be going on? And does anyone have any ideas of something that could help me feel better? The nurse said they normally would tell me to take some fiber but since my stricture I probably shouldn't do that. I don't understand that either. I thought I didn't have the narrowing anymore since they removed that mass. I don't know what to do or what I can eat anymore! Any suggestions? Anyone?
17 Responses
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Avatar universal
Betzizi,
Gosh, thanks also from me, for that info about Naltrexone.  I still have some problems with my IBS, and I'm scared it will come back all the way, so I'm going to keep that advice in mind.

April,
As for you wondering about IBS, it can come in two forms, with diarrhrea or with constipation.  I had nothing but diarhhea, all morning long, every morning for six months.  I thought I was going to die.  I'm not sure about IBS with both.  Any website on IBS will tell about it, though.

As for exercise, when you get home from your second job, you can do simple stretching exercises so your muscles will unwind.  Only takes about five minutes to go through some routine you can come up with that stretches and releases all the sets of muscles.  Lay flat on the floor and breathe deeply when you're done.  That will take care of exercise well enough for you, since your time is limited.  

By the way, I think you should keep your second job, because when you're younger, you can physically do it, and that is the time to make all the money you can.  Try to save a set amount of your paychecks, even $10 each time is better than nothing, put it in another account that does not have a fee for having too little in it.  I handled it by instead of opening a savings account, I opened a checking account in another bank that has a no-fee checking account deal, and I just leave my money in there and they don't charge no matter how small amount I have in there.  You tend to forget about this money if it's in another bank, too.  

When that savings reaches a certain amount you decide on, put it in a one-year or five-year CD, so it will earn more interest and you cannot get at it for that length of time.  This whole thing is the idea "pay yourself first," you write out a check to yourself when you pay your bills.  And if you think you cannot afford it, just imagine what you'd do if you lost your main job or something like that, then you'd REALLY not have enough money.  

By doing this, and I mean for many years, when you actually cannot work a second job and even have to cut back on your main job, you'll have this investment that you can just take the interest from the CDs as your "pay."  That's basically how people deal with retirement.  You build up enough cash to where the interest is a whole bunch.  Most people just leave the interest in there, until the day comes when they have to use the interest.  And if you've got enough in there, you can practically live on it.

As for your original post about having diarrhea and getting these growths and whatnot, in addition to the medication the other poster just told you about, seems like there's foods you can eat that are supposed to help prevent growths in people who have a tendency to have them.  I'm sure you can find a website that talks about what foods help what problems for people, I think garlic is one for better digestion, and the website I go to is www.natureschoice.co.za/symptoms.html if you want to start with that.
Bye for now!  GG  
GG
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203342 tn?1328737207
Thanks, Betzizi! I'll check all that out!
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Avatar universal
PS April2 -- Don't know whose note I mentioned this in -- not sure it was yours.  But anyone out there with Crohn's Disease or IBS (and CU?) should check out this website: www.ldninfo.org and read about this really low dose usage of a mediation which seems to help so many of these problems.  You'll see a before and after photo of someone's colon (with Crohns, I think) after only one month of the medicine's use.  Beautiful and healthy. The drug use is Low Dose Naltrexone. It requires a prescription.  Actually doing research on this and MS at UCSF plus it seems to help certain cancers as well...Basically through boosting the endorphin levels in the body.  Check it out...
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Avatar universal
Hey, April2.  One of the best ways I've personally found to balance out the microflora in the gut is to take Probiotic PEARLS (named such because they look like little pearls).  For twenty years I  had been tried to treat candida and poor bowel flora balance and tried all those different acidophilus products (liquid, freeze dried, in milk and yogurt, etc.) and I never felt any different. Then one day my husband found out about these pearls, and I started on them and within a few days I could REALLY feel it!  I will not live without them now. The difference with these is that they have some kind of coating which protects the live good bacteria from the stomach acids and they make it down to the intestines safe and sound to do their good work where they need to.  Perhaps this will help?  Many pharmacies and health food stores are now carrying these pearls.  We like Dr. Williams product (online) the best because they seem to have more strains of good bacteria than some others.  Hope this helps.
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203342 tn?1328737207
What's C Diff?

Hey GG, the medication, Entecort, was supposed to calm down the ulcers and inflamation I was told. That's why I only did it for a few months. I only wondered why she said that because they hadn't told me that before!
I know that colon cancer would show up on a colonoscopy. I don't want to think or worry about it, but I know my grandma had it. We just had a pastor friend die from it a couple of months ago. He was way to young, not even 50 yet, so it's scary. I try not to think about it.
With the H.Pylori, that was another puzzle. They told me that I'd always show positive now on a blood test because I've had it. So how in the world would I know if I still had it or not? I never did understand that one.
You said you had IBS. Is that a possibility for me? Here's the weird thing. I went from having diarhea 3 straight weeks to this last week I didn't have a BM for two days and then it was just a tiny bit and hard, like constipation (sorry if tmi, lol). That's why I think this must be diet related. I just don't know!
I'm supposed to see a dietitian later this month. Hopefully, she can help.

I sure miss the ol' gang on here, Athleet, Smilie and the rest. I hope everyone's doing well.
As for the exercising, I probably don't do as much as I should. Right now I'm working two jobs and am just so busy, not to mention exhausted. I'm thinking of letting go of the one job. We just really need the extra income. Oh well. Such is life.
Good talking to you again. Take care,
April
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Avatar universal
Hi April,
Yes, good to run across you again, I remember Athleet.  Let's see, about your digestion, I have IBS, it was caused by a medication, and when I went off it, I got better.  But to this day, my digestion is real sensitive to almost everything I eat.  I used to eat everything, but now I can only eat a few things.  I think your idea about eating yogurt is a good one, that Activia stuff works good.  I eat cheerios and 100 percent whole wheat bread every day, and I drink plenty of water.  Also, my digestion works better the more I eat.  Orange juice is good for the digestion, but just a little bit daily, a couple swallows.  Change from regular milk to Acidophilus milk.

I think you said something about having H.pylori at one time, and as you know, sometimes that bug is hard to get rid of, so could be it's still affecting you, I don't know.  They can run a test, just to be sure you don't still have it.  You also said you have a nervous stomach, which I know how that is, on account of I have IBS.  When a person gets nervous, their stomach tightens up and so do their shoulders.  I hope you are getting enough exercise daily so that when you lay down to rest, you are really relaxed.  Sometimes putting a hot water bottle on the tummy will relax it.

By the way, if you have developed colon cancer, which you said you were worried about that from family history, the colonoscopy show it.  That exam will answer a lot of other questions for you.  And as far as the nurse saying the medicine you were taking wasn't working anymore since you had diahrrea, that was just a common sense sort of statement.  I mean, if you take a medicine for an infection with a fever and it doesn't go away, then a new medicine has to be used.  That's all she meant.

Try eating the stuff I told you about.  See you!
GG
Helpful - 0
Avatar universal
If you're looking for bacterial causes, what about C Diff?

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203342 tn?1328737207
Oh my!!! I think I'll pass, lol. I think there's got to be better ways to get the intestinal flora back to normal. I'd rather eat a lot of yogurt or something. No offense :).
I did have H.Pylori before a lot of this happened. I think there's something to that, though, but sorry, I don't think I'm quite to the point of transplanting someone else's poop in me!
Helpful - 0
Avatar universal
You may need to have your intestinal bacteria make-up totally upgraded!! Did you have a bacterial infection prior to this problem? You may not have heard of this, but there is a technique in existence which has been very successful in treating patients with chronic diarrhea: a rectal implant of someone else's healthy stool. It sounds absolutely gross, and it has not become a universally accepted technique yet, mostly because of the optics, BUT IT WORKS!!!!!!! If your intestinal flora have been totally ruined , either due to a bacterial infection of the bowel, sometimes post antibiotic treatment, it leaves the bowel unable to digest food properly.

You should really investigate this treatment option. Check out this news article:
http://www.cbc.ca/health/story/2007/11/13/fecal-transplant.html
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489725 tn?1280052553
interesting post
the way i see it u had inflammation confirmed at one point so u may have crohns that has gone or went into remission which is quite common. crohns can affect anywhere along the whole tract and uc is just in the bowel --ibs can affect the whole tract as well and does not always have to involve pain -the pain in ibs is usually down to the altered flora in the gut being unbalanced natural bacteria producing gas ,and this tends to get trapped and may cause spasms in the gut but not all would suffer from this
there is new theory now that there is low grade inflammation in ibs but it is only being worked at now
are u tried any meds just for the diarreha
l-glutamine is a great product and safe to take for healing the digestive tract
fish oils are good for inflammation if u dont want to be taking meds etc
peppermint teas is also excellent for the stomach/bowel

hope u get answers
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203342 tn?1328737207
Hey ggreg! I haven't heard from you in a long time! How are you?
Thanks for writing. I don't think it's UC because isn't that more in the large colon? I had the ulcers and inflamation in the small intestine. They did give me meds back in January for Crohns. It was Entecort. I took that for 3 months and then they weaned me off and I seemed to be doing pretty well then. Then I went back to see the Gastro this week (well, I saw his nurse) and she was looking in my records and said that the meds didn't work. I was puzzled and asked why they said it didn't work and she said because I still had diarhea. Well, they never told me they didn't work, so I don't understand. I did have diarhea some back then but I was told because of the surgery I might always have that. The only reason why I went back this week was because I was having it almost every day now.
I didn't say I wouldn't see the specialist. I have to wait on the referral. I just figured that I needed to probably see a dietitian to see what kinds of changes I might need to make in my diet to help. It's not that bad. It's not like I have blood or anything. I just wish I could figure out what I can and can't eat! I'm assuming that's what it is anyway.
I guess I'm just getting old! :) Can't eat everything like I used to. Oh well.
I hope you're doing well. It's been so long since I talked to you and Athleet, Smilie and the others. Take care! And thanks again for writing.
April
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Avatar universal
Hi April,
You could have Ulcerative Colitis, which the website is www.UlcerativeColitis.com.  There is even a section in that site that compares the differences between Chron's and UC.  There is treatment for UC, which should help you a lot, and they talk about a medication that helps.

Also, if you'll simply Google the two words: ulcerative colitis, and there is a website that will come up that can tell you the sorts of things that are good to eat for it, sorry I didn't write that one down.

Now, the way I see it is, as recently as last winter, you had inflammation and ulcers in your bowel, which is not normal.  Also, since the nurse said you had a stricture, well, what that means is, the scar tissue that formed when they operated before, it has made the opening in your bowel smaller.  This can be operated on, to free up the stricture, which may or may not help you, depending on how severe the intrusion on the bowel is where the scar tissue has formed.

I do not know what the treatment is for Chron's.  But it looks like they could give you the medicine for UC and see what happens, and if you get better, great.  If not, then you can go at this as if it were Chron's, particularly with a previous diagnosis of it, and do whatever THAT treatment is.  I didn't look all that stuff up, about Chron's.

The doctor has enough evidence to go ahead and jump on one diagnosis or the other and give you some treatment, for crying out loud.  I had a general doc who was very good, she decided I had restless legs syndrome, and immediately gave me medication for it, while I waited to see a neurologist to confirm the diagnosis, which he did.  So, same thing for you, I don't see how come they won't give you some pills for UC, altho for all I know, you can't do that if you have something else wrong like Chron's, and vice-versa.

But it is actually important to know if you have UC, because that particular disease can affect other bodily organs in a rather significant negative way, which that website I told you about talks about those details.  See, I also do not know how come you won't go see the specialist the doc wanted you to go to, but I don't blame you for perhaps not wanting to either pay for or put up with further investigations, if that's how come.

So, in closing, I think you should check out the UC option and treatments.  Compare it to Chron's and find out what THOSE treatments are at a Chron's website.  They even have websites that have both conditions discussed together, which that Google will bring up that website, too.  I noticed it there.  Also, check out websites for diets for both conditions.  Call your gastro guy, maybe, and ask him to treat one of them at least, unless there are problems with doing that.

I'm sorry you're having all these problems with your appendix and bowels and everything else.  I do not think it is a good thing to have diarrhea all the time, because you can get quite dehydrated from it, and also if you don't eat enough food, you can get really depressed mentally, which is a very bad feeling all by itself.  I hope some of the things I've offered here can help steer you in the right direction, so you can get better.
GG
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203342 tn?1328737207
They at first thought it was Crohns. They were sure of it when I had that mass removed and biopsied. I had two different pathologists who looked at the mass and said they were like 98% sure it was Crohns. Then five months later at my colonoscopy/endoscopy and with my blood work at that time they said no to Crohns. How can that be? How can they at first say yes, it's Crohns and then no? Is that possible? I still don't see why they can't just figure it out already. It either is or isn't. I don't get it.

Thanks to both of you for writing. I really appreciate it! Debbie, I'm actually not on any medications right now so it couldn't be that causing the diarhea. I think it's probably me reacting to things I'm eating. I just can't figure out yet what all doesn't agree with me since it seems like there's so many things that don't agree with me anymore.
And I live in Colorado! :) But thanks for the info on the doctor. God bless you too! :)
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Avatar universal
My daughter, who is 29, was diagnosed with chrohns years ago.  Your syptoms sound almost exactly like hers.  It was only three years ago they figured out that she has gastroparesis.  Some of the medications she was prescribed gave her the diarrhea.  Dr. Fisher from Temple University in Philadelphia, PA is where she goes.  He is one of the best gastroenterologist in the country.  I don't know where you live, but good luck and may God bless you
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584742 tn?1219148217
Yes, inflammatory bowl is different. Check out this website for more information. Abdominal pain is usually associated with IBS.
http://kidshealth.org/parent/medical/digestive/ibd.html
There are a couple of tests that can help diagnose the problem: A barium test will take a look @ your intestines and see where things are or are not moving.
A stomach emptying test will determine if the problem is in the stomach.
Ruling out (or in) disorders of the digestive system will help your dietitian help you.
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203342 tn?1328737207
Yes, I feel nauseous a lot before I eat and after. I get a nervous stomach a lot too. I was wondering about IBS but I heard that's what they diagnose you with when they don't know what else is wrong with you. I don't know that much about IBS. I don't have abdominal pain, thankfully. I've had the standard blood tests to rule out anemia, etc., along with the above mentioned tests. I saw my Gastroenterologist yesterday. He's the one who did my colonoscopy/endoscopy last Winter. He's the one who's stumped and wants to send me to a specialist. I told them I didn't think that was necessary. It's not like I'm on death's door. I'm the one who suggested to them I see a dietician first to see if it's diet related and if I change my diet if things will disappear.
I don't know why they can't seem to diagnose me, though. At first they thought it was Crohns. Now they're saying it might not be that but they're not saying what it could be then. I don't know. I just want to get all this settled.
Thanks for writing. Is Inflamatory Bowel Disease different than IBS?
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584742 tn?1219148217
I'll give it a try.....
First, I can't believe your doctors are just now sending you to a gastrenterologist specialist. The ulcers can be indicative of inflammatory bowel disease. I have a couple of questions before I can give you any more answers though...
Do you get nauseous? Do you have abdominal pain? If yes, where? Have you had ANY other tests done besides the ones mentioned above?
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