Scared, frustrated and down right confused..

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That sucks. I don't get why they just as soon let people suffer. They should just butt out ESP when it comes to something so serious. I'm in Canada and have my mmar which is our federal gov program.. We just had an election here and our primeminster just got a majority Hes an extreme right winger and kinda worried about him shutting it down. I really hope he doesn't but he has this big law agenda and totally anti drug. We have a new crime bill coming into effect in the new year. I get it when it comes to cocaine and heroin but weed is totally different.. If u get caught growing 6 plants or more there's going to be a mandatory prison sentence. I just hope he leaves the mmar intact and not shut down the compassion clubs. The marijuana that they supply isn't very good at all. Ya think federal rulings would trump the state law. So dumb. Where's their compassion. Hehe if ur gov sold and taxed it you guys could climb out of ur 1.2 trillion dollar hole.
 
I really dont wanna be taking mj. It actually made me vomit...

I honestly just want to be better. No drugs, no doctors, no sickness, no worries.
 
I know bro it sucks being young and sick. It feels very unfair. The not knowing is the worst part. Hang in there and finish your antibiotics. Hopefully you will be better soon!!! Happy a thanksgiving!
 
Hey everyone! I hope you had a great holiday!

I just wanted to update that I have been taking my medications as perscribed to getvrid of this infection. I believe that is under control so I just have to finish my script.
As for everything else... Well im still having painful cramps and joint pains. My diet is very limited still since anything I ingest is gotten rid of swiftly in the toilet.
I have noticed that my feces is still very dark and have been having painful bm's when im actually able to keep food down and ot gets through my system.

My diagnosis of IBS still sticks as of right now. But does anyone else have experience with tgis type of infection? How long it lasted and when they felt normal again?
 
I would eat a diet of bananas for breakfast and boiled white basmati rice for Lunch/dinner. It's easy to make. Use 2:1 ratio of water to rice. Bring water to boil and the. Add rice. Stir. Bring back to a boil. Stir really quick and then cover and reduce to low simmer for 20 mins or until water is absorbed. Add well cooked veggies and skinless chicken breast grilled or broiled with salt and pepper. This should help calm the diarrhea. Are you taking probiotics? If not you should because of the diarrhea and antibiotics. Take sacharamides boularhdi (sp) and something with acidophilus and bifidus. That helped me A LOT when food was just running through me. Did they put you on Prednisone?
 
The food is not running through me. I am throwing up after I eat. I am on a probiotic along with my medicines.
i am on a strict brat diet as well since it is very bland yet nutritional. I dont know if I have posted this before but as of now I am down 35lbs since this started.

I feel as though the doctors have found that infection and stopped looking. When I was forced to seek help the first time at the hospital my wbc count was not elevated at all. If I had an infection from thw begining my wbc count would have been recognized at that point.

I feel like IBS is so insignificant compared to what you all are going through and I hope you all don't take offense to me questioning my health like this. I feel as though there has to be more to this than what was found.
 
Dude IBS does not cause vomiting. A 35lb weight loss is a HUGE red flag. Do u bave a primary care doctor? If not get one. If you do and they aren't helping you fire them. How much more weight can u afford to lose? I supposedly have crohns and am doing a 1000 times better than you right now. You have something else going on. It could just be crohns or it could be something else. The ER isn't going to follow up on things they just fix emergency situations. You need a gastroenterologist and primary care doctor at the very least and they must be proactive. Vomiting and 35lb weightloss is not good!
 
John-88 said:
Ok guys im done with my colonoscopy. While they were in there I had 2 resections. Two polyps removed..but the doctor couldnt explain my bleeding. He said he had never seen polyps in a 23yo person. Im drosy from anestesia so ill update again tomorrow with more detail.
Click to expand...

Sorry it's hard to keep up with everything. Did you really mean to say you had two resections? That's where they cut out the diseased part of the colon. At any rate your weight loss is very troubling as is the vomiting. Find a family doctor u like who you can go to from now on so they know you and your history and can take an active role in treating you. It's borderline negligence that they are not addressing the vomiting and weightloss. You should probably be on Prednisone (steroid) to stop the weightloss and get you stabilized until they figure out what the problem is. Could be gallbladder too but not sure. Not knowing is an awful feeling. Hang in there and call your doctor tmrw and complain about vomiting and weightloss. Complain on phone and in person so it's on the record and fresh in their mind!!! Do it! Don't mess around. I'm sorry they aren't being proactive but you must be proactive with severe symptoms like you are experiencing.
 
^ does anyone else see anything wrong with the above post other than the post itself? Can a moderator please rectify as to why someone is posting under my profile?

I did not write that..
To clarify otherwise, a resection is a removal of any part of the body. The polyp removal was my resection. In cases of crohns or colitis a larger resection is performed. resection was also the term used on the doctors report.

Today I am still nasious and only just woke up about an hour ago. I have not ingested anything besides my medications. To break down a daily regimen of medications for everyone.
8am: Cipro, Flagyl, Omeperzol, and Ondasteron (ultracet if needed for stomach pain)
4pm: Flagyl (ultracet can be taken again if needed for pain)
8pm: Cipro
12am: Flagyl, Librax, Ondasteron (ultracet if needed for pain)
probiotics and other vitamins are usually taken in the morning.

Diet wise:
Breakfast: Ususally I don't eat breakfast due to being nausiated in the morning and having either D or am comstipated.
Lunch: Again usually very nausiated so I wait till about 2pm to eat a small snack. Usually chamomile tea and something very light to eat such as probiotic yogurt (activia), bananna, dry toast (whole wheat or whole grain)
Dinner: I am usually so hungry at this point that i would love a nice juicy steak.. I will usually have broiled plain chicken and something else light to go with it such as veggies (well cooked) and white rice. I usually don't get to far into the meal before I stop because I feel like I am going to get sick and vomit.

The nausia is so bad anymore. I believe it to be linked with all the medication I am taking but this is the regimen that my GI has me on.

oOooO, and before I forget. The culprit is back. I have been noticing blood when I wipe after a BM... especially after a painful BM. Nausia is usually noticed about 2 hours if not more before this happens and is accompanied by stomach cramping and pain.

I do have a GI that i see about once every month at this rate. I don't have a general practice doctor because I never usually get sick like this to have to see a doctor. Getting sick like this has totally changed my life. I am a hard working man. I was putting 70+ hours a week in at work and taking care of a home and other responsibilities. I was making so much money I bought myself a brand new car! Life was great indeed. My relationship with my GF was thriving.
Now I feel like I am reduced to a worthless warm body left home to tend the animals. I have noticed my GF no longer likes to be intimate and I worry what she thinks of me really.

I am sorry for this long winded rant guys. I am just so sick of being sick.
 
Sorry I've been gone so long. My computer died or something. Do you think you have mesenteric adenitis like the dr said? I've had doctors tell me I had this or that many times and had a sixth sense for if they were right or not. Sometimes what they try to diagnose me with just doesn't seem to fit. That's why I ask what you think. It sounds like that condition is usually pretty mild and very treatable! You're lucky if that's what you have. Sounds way worse if you get a viral infection though - blood in stool, worse cramping. Have they tested for a viral infection if that's what the doc thinks you have? All very confusing.

Just in case you're ever in the market for a new dr this is my favorite website to do research on docs before I see them - RateMDs. The link is for GIs in NJ. You're lucky they have so many ratings and reviews. I'd pick someone with at least 5 reviews and 4.5 rating or higher. If you're really persistent and tell them how stinking sick you've been I think someone should get you in within a week or two. You might have to leave a message for the dr with their nurse though. The schedulers can't get you in that soon but the dr can tell the nurse to get you in sooner.
 
You know I believe I developed mesentary adenitis along the way..if I have it at all. You know what I mean? The doctor suspects that to be the problem but there was no sure dx. I was told this is how all dx's are. None are set in stone.
I do know that if it was an infection a week on cipro and flagyl already should have cleared most of it up. The cramping is still apparent and im bleeding again. It seems like every bm is dark or maroon and there is also blood. weird right? What is more weird os the polyps were also removed from the part of my colon where the infection was found, or rather the enormous lymph nodes were spotted.
I have tried researching but there isnt any info connecting the two. The only thing I saw online was talking about how mesintary adenitis can be a sign of IBD and it is also caused by epsteem barr (which I have)
Epsteem barr can also cause lymphoma which scares the crap out of me(no pun intended ;P ).
Im at a loss though since I am the one getting every answer under the sun.
 
Well it seems you posted that about the resection while under anesthesia which is probably why you don't remember posting it. It seems like you have a few other crazy sounding illnesses. Are you self diagnosing or doctors told you that? 70 hours a week will run your body down and trigger inflammation.
 
JohnnyO said:
Well it seems you posted that about the resection while under anesthesia which is probably why you don't remember posting it. It seems like you have a few other crazy sounding illnesses. Are you self diagnosing or doctors told you that? 70 hours a week will run your body down and trigger inflammation.
Click to expand...

hey im not nuts i promise.

The posts are out of chronological order if you look. I did NOT post that..
The post showed up nearly a week after I went to the hospital the last time and I was not under anestesia.
I really hope you all don't think i am crazy, i really am not.

I have been seeing doctors for everything going on as well I am not self diagnosing.
 
I know you are..I'm sorry. Just have had so much on my mind and to think I'm crazy on top of that...

Anyway I am trying to eat minimally for right now. Stick to more liquids and less heavy foods. I want to get my digestive tract used to eating normally very slowly in hopes that I can live normally like I used to.

I talked to the doctor yesterday and he told me to buy some more cortizone suppositories and go from there but that he does not want to do anything further right now until he sees me again on friday.
 
Why does he have you on cortizone suppositories?? I thought those mostly only affect your rectum and it sounds like you are having problems higher up. So... do you have an active infection of Epstein Barr? That sucks.
 
I see you're on Flagyl. Maybe I'm missing something else, but I know I was on Flagyl for a week and I literally threw up everything I ate while on it. I felt so sick the whole time I was on it
 
stupidbody! said:
Why does he have you on cortizone suppositories?? I thought those mostly only affect your rectum and it sounds like you are having problems higher up. So... do you have an active infection of Epstein Barr? That sucks.
Click to expand...

The doctor believes I have hemmeroids since he saw a small one. The supos are supposed to reduce them and stop the bleeding. But I feel I am having bleeding higher up. But since they did not see anything bleeding in the colonoscopy they have dismissed that idea.
I do not know if my epstien barr is active since you need to do a specific blood test for it.
 
KWalker said:
I see you're on Flagyl. Maybe I'm missing something else, but I know I was on Flagyl for a week and I literally threw up everything I ate while on it. I felt so sick the whole time I was on it
Click to expand...

Yes I am taking both Flagyl and Cirpo and They do make me feel nausious as well. The vomitting was occurring before involving these drugs though.
 
John my crohns started the same way. I was in my early 20's and would lose controll of my BM's for ne reason. Had lots of pain sometimes and almost always lots of blood. It got so bad at one point I had to wear maxipads in my underwear. Being a guy you can understand how that would make you feel. I would go to the doctor they would examine me, his gloved hand would be covered in blood and then he would say, yup your bleeding, but we don't know why. I then had a colonoscopy, just like you they found polyps and nothing else. The official diagnosis was that i had an "angy colon". You should have seen the look on the docs face face when I asked him "How do I make it happy, buy it flowers or take it out on a date". I am very sarcastic in nature. The best advice I can give you is keep a journal of foods you eat and the responses and how many BM's you have and what they look like. Take pics if you have too. I did, then the doc believes. But the best advice I can give is develope a sense of humor about it. That is how I survive. My GI doctor was shocked the first time he said bend over you are going to feel some pressure and with out missing a beat I said that better be your finger. He now knows that is how I deal with the humiliation of always having to poked and prodded there. I always tell people when the question comes up about being with a man, I cant say no, once you had a finger in the butt you've always had a finger in the butt. Remeber to laugh even though you may want to cry. It helps me most days.
 
Hello! I have been reading through this very lengthy thread and thought my experiences may be helpful to you as well.

I was diagnosed back in 2005 with Crohn's disease. I got diagnosed during my first undergrad where I was studying Pre-Med and was very very stressed out. However the diagnosis did not come easy. I was misdiagnosed for years. Prior to my diagnosis I went to three different doctors within 2 months and was told I had IBS, GERD, hyperactive bowel etc etc... It finally took a perforated bowel to get the diagnosis. I was presenting with s/s of appendicitis so the ER reacted quickly and found the perforated bowel via a barium enema... I was suppose to go under emergency surgery to repair it but I fought and fought for them to wait until my mom came 2 days later... In the meantime they started be on IV antibiotics and steroids and rescanned me 2 days later and noticed that the perforated area was closed. After a 2 week hospital stay I was released and referred to a GI doc where I was scoped and immediately started on Remicade, Steroids, Pentasa and Asocal. Needless to say I have tried the whole entire gament of medications and I am either allergic to them, they cause liver issues, or they do longer work for me. 2009 I had a bowel resection and was put on Cimzia for 1 year, but with financial hardship I was unable to afford the medication so Jan 2011 I came off all meds and I am doing FANTASTIC to this day Dec 2011. Sometimes I wonder if the meds were making me sicker... but who knows the resection may have just put me in remission!

Colonoscopy: I have had 6 scopes since 2005 and every time I have tons and tons of polyps, too many to count. Many have been biopsyed and all came back as pseudo-polyps related to inflammation and are normal with Crohn's patients.

Bleeding: Typically with Crohn's you do not have bleeding unless it is hemorrhoid related. You mentioned that yours are sometimes black? Black stools indicate bleeds higher up in the intestine (areas in which colonoscopys will NOT reach and would need an endoscopy from the mouth down to see). Bleeding is also associated with Ulcerative Colitis.

Blood Tests: an increased WBC just indicates inflammation and not necessarily an infection. Have you had any other inflammatory blood tests like a Sed Rate or CRP? What is your RBC count and hematocrit and hemoglobin? Also there is a Crohn's blood test available but must be sent to the University of California... it is the only lab that does the test and your MD may not be aware of it. (My blood test came back +)

Despite my disease I have been able to receive two degrees and I am now an RN. I have had many ups and downs and my disease has kind of steered my life. I had all intentions of going to medical school but came to a realization that being a Doctor may as well be a death sentence since it is a VERY stressful occupation and requires far too many years of commitment... lol so instead I went back to school and got my Bachelors in Nursing.

Being misdiagnosed is scary but you need to be your own advocate and FIGHT FIGHT FIGHT for answers! Please feel free to stay in touch and I am terribly sorry for your troubles and illness, I hope you find some answers very soon!
 
I really appreciate both of the responses made earlier.

You know just as I do how complicated it is to make a doctor understand YOU! I am just a very scared college student. I have no idea what is going on with me right now. I am going to see my doctor again tomorrow and have a talk with him about all the possibilities. He seems to always want to rush through visits, when lately it seems like my brain is not working fast enough to keep up with the conversation. I always forget things i need to ask him and when i call he never answers and never returns my calls.

With the possibility of EBV causing mesenteric adenitis, i am also concerned with the additional possibility of lymphoma since my lymph nodes are enlarged. I may seek an infection disease doctor to ensure my worries are nothing more than just that.

As for my staying on this forum, I have been leary to post anymore. I feel like I don't belong posting in a forum for IBD when I have no clean cut proof I have IBD, more specifically I have zero. I may check back from time to time and see how everyone is doing but until i am vindicated in one way or another with an official dx I will keep my thoughts to myself.
 
To all on this forum, whether you have been diagnosed or not, I reckon I have had every sympton,over the past 46 years that you are all experiencing now.
I suffered the very same , disinterest and incorrect diagnoses regarding my on going problems, from overpaid GP's, for ten years prior to acatually demanding, and paying privately, for a second opinion from a surgeon.

Read My Story, from "jack dusty", dated 30/11/2011, it is quite natural to be fearfull I can assure you.

My advise for what it is worth, apart from the pain and your motion problems, the fact that your stools are black is also an indication of blood, whilst your symrtons certainly could be crohn's, it could be down to ulcers, polyps on the bowel etc.

Whatever it is, this needs correct diagnoses, and in my opinion, URGENTLY, either by, CT or MRI scanning.

In my own case, following the removal of half my bowel in 1976, it ended the pain immediately, which had been dreadfull, and continuous 24/7,night and day for ten years, I have not had any pain since that date.

I have had severe bleeding at times, but colonoscopies proved this to be polyp's which were removed (painlessly) by biopsy at the time of the colonoscopy,

Polyps should always be removed and most certainly not ignored since they can also be cancerous, and according to my surgeon, crohn's sufferers are also at higher risk of bowel cancer.

Please do not neglect your currrent symptoms.

best wishes and good luck.

Peter (jack dusty).
 
Good luck John. I post and read here because it helps me understand my illness and others coping mechanisms and alternative treatments. Feel free to post or not whatever makes you feel better :D
 
Hello everyone,

I just wanted to let you guys know that I have finished my script for flagyl and cipro. I have been off of them for three days now. I am still experiencing all the symptoms I was before. My stomach still aches and stings. I am still dizzy and very much fatigued. I have been going to bed earlier and not being able to wake up till very late.
BM's still hurt way moe than they should. and eating always renders me nausious.

The doctor does not believe that EBV is the culprit. He now thinks I have fibromayalsia (idk how he came to this conclusion). He put me on a regimen of omeperzol, librax and elevil.
My opinions on these medications are that they make me feel slightly better as far as mentally coping with what is going on but they are not helping with the bothersome symptoms.
 
johnny o: my insurance sucks. I have been to the ER so many times and they understand my symptoms and believe it to be UC or Crohns based on my symptoms but they cannot find it. The doctor I am seeing now is better than the other doctors I have been seeing in the past. I have been bringing my mother with me since she can vouch for my current condition.
Mainly I just feel like im on my own with this until it gets so bad that I have no choice but to have to go to the ER like the last time.

I don't follow when you say "doing the same thing and expecting different results". I have been trying different treatments and seeking various doctors. I know I probably sound like a whiner, but i just am not the same as I used to be.
 
Please see another doctor. Another doctor can make all the difference. I was sick for months for the same reasons you are: your doctor isn't finding anything, he's not listening, and not taking this seriously enough. He needs to find the root cause and not pussyfoot around all your symptoms. I know you're up to your neck in your sickness and it's hard to fight anymore, but may I suggest the first step of finding a new doctor. Here's the link to that doctor review website again.

You can switch insurance too. Now's a good time to do it with Jan 1st right around the corner.
 
Hi everyone. Its been a while.. I hope you all had a great holiday.
To update; my doctor has doubled my dosage of elavil along with maintaining my other medications. I seem to have controlled the big D for the most part but as for my other symptoms I am having a jard time with those still.
 
I am glad the big D is under control, but I hope the other symptoms subside soon, too.
 
Me too. The joint pain and back pain is the constant bother. The stomach pains seem to happen shortly after I eat and right before a bm.
I have lost a total of 50 lbs since I got sick. Still loosing weight daily.
 
Update:
Today I am vindicated..my recent ct scan revealed significant thickening of the walls of my large intestine. The lab tech wrote that this is indicative of IBD or incomplete distention of the bowel. Idk what the later ment but, my doctor told me it was probably not the case. I am hoping with the understamding of the evidence I can be put on a better life plan, so I can regain my life!
 
lets hope this diagnosis brings the progress your health deserves. i'm off to gastro bloke today with similar issues. got pain spreading across my transverse colon. not had crohns there since my twenties.

best wishes to you John
 
Thank you all. I suppose further testing will determine colitis or crohns.. Endoscopy is scheduled for the 16th, ill update again then.
 
Update:
The endoscopy revealed no IBD in my upper gi tract but gastritis was discovered. My doctor also pulled me from the medicine I was on since I guess he realized the situation is not "in my head", so yreating the issue with anti anxiety and anti depressants was impossible. The biopsies need to come in still but im hoping to just get better and go into a "remission" .
 
Welcome John!
I have Crohns and have had it for many years! I'm currently in a flare-up and am quite frustrated myself! It's a chronic condition that you learn to deal with when it decides to rear it's ugly head! After a while you learn your triggers and this forum has helped me sooooo much! Just knowing we aren't alone and can come here for validation or suggestions! You already started giving back by listing your homeopathic supplements that your using. Glad your colonoscopy went well and you will get to move forward now. What did you mean you had 2 resections? Wondering if the medicine (which is awesome isn't it?!) was taking over! Let us know....
 
I had two polyps that were resected, they were sesile but found to be caused from inflammation. I am so glad that the homeopathic medicine has helped here ill give u my list..
Aloevera drink any flavor peach is yummy
Teas with chamomile, manzanilla, ect..
Malanga (root vegitable)
White rice
Plain chicken ( I found red meat is no good)
Honey can help its a natural antibiotic
Probiotics (anything to regulate is amazing)
Flax seed oils/fish oils/gucosumine &condroitant (helps with inflammation not only in the bowel but in joints)
Stay away from processed sugarry drinks amd foods(i noticed they can instantly set me up for failire)
Ginger root (cook with it)
No garlic (it can make you bleed more)

I am sure there are hundreds of things we can eat to make us feel better but being cuban my molanga treatment seems to work well with others. For one month eat nothing but boiled malanga, mash it up so its creamy amd domt eat the stringy stuff. It gets old but its an old natural remedy for stomach problems. Good luck my friend
 

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