Need advise. Please help

I'm sorry to hear you're having these symptoms and I know it's maddening when doctors act like it's all in your head, but it actually sounds like your doctor believed you, or he/she wouldn't have ordered your colonoscopy and other tests. Since you describe yourself as a hypochondriac, it does make it harder for you to not panic or accept that your diagnosis isn't something dire. If you have the ability, it may be beneficial to see a therapist in order to help control your panic attacks and hypochondria as those things can be as debilitating as a physical illness.

The thought of Crohn's can be frightening, but there are many things that can cause diarrhea and pain, not just Crohn's and Ulcerative colitis. And some people with Crohn's don't even have diarrhea. As hard as it may be, try not to panic. The vast majority of us with the disease will never die in a hospital with our "intestines pulled out".

Ask yourself this - do you have any blood or mucus in your stool? Are you experiencing severe fatigue? Are you having other symptoms that diseases like Crohn's often have - unexplained arthritis, for example? Any eye inflammation? You can go to CCFA.org to see the extraintestinal manifestations of Crohn's and UC.

If you had a colonoscopy, your terminal ileum - the last part of your small intestine - would have been looked at with the scope and usually this area will show some inflammation/disease if you have Crohn's. You should ask your doctor if he/she was able to view it. If your colon spasmed during the colonoscopy, that may be the cause of the pain you have with your diarrhea and would fit the IBS diagnosis.

I can safely say I've never known anyone having as many Calprotectin tests as you have had in a short time. Did your doctor order all of these? There are people here who know more about this test and will hopefully answer your post as to this test's value.

NSAIDs can cause problems for susceptible people, especially at high doses that doctors sometimes prescribe for injuries. My husband's been prescribed doses for injuries that are 3 or 4 times what's available over the counter. If your symptoms started with NSAID use, I would suspect that it's part of the problem.

Think about your diet - what foods are you eating? Some foods cause more gas and intestinal discomfort than others and have to be avoided. Some people cannot handle dairy, for example.

I do wish you well.

Hello guys very thank you for answering me. I love you all. To some of the questions you asked.

extraintestinal manifestations - I dont have such, no arthritis (i guess i would have known if i had) i might have joint pain sometimes but i do sports and have many traumas and injuries. I dont have eye inflammation or skin issues. Usually if i have a pain in a joint it is not that much to make me go to the doctor usually it is temporary for several minutes. I dont know how does arthritis feel so i cant tell you if i have it. joint pain is not uncommon for me i had joint problems and injuries since i was a little kid so it is hard to tell if i have arthritis. During these 7 months most of the time i havent had joint pains. I dont have temperature, my highest temperature was 98.5F

weigth - while i was on a mild diet i lost 10kg (22lb) for 6 months but the moment i started eating junk food again, I regained 2/3 of my weigth. I am 178.9lb currently and i am tall - 1.86m (6ft). All of my problems began after the nsaids (aspirin + pyroxicam) my gp nearly killed me...and here i am now 7 months later with terrible symptoms.

blood in stool - I have made 2 occult blood tests months ago and they were negative . Did them because i have red things in my poop and turned out to be tomatoes and paprika... After colonoscopy the conclusion said literally:

"The colon was examined till the end - cecum. The observed mucosa was mildly hyperemirated(midly red) through the whole colon and covered with thin mucus. No aphtous changes were found. No ulcerations were found. There were several spastic regions in the zone of sigmoid colon and colon desc."
It was something like that i just translated it from my language. I come from Bulgaria. Ileum hasnt beed inspected, the doctor told me that isolated inflammation in the small bowels only was rare... ( i dont agree with him but if he says so...)

nutritional deficits - i was in a hospital there they made a very detailed blood tests. I had high Hemoglobin , low WBC, low Lymphocytes,high Rbc (red cells), high Albumin (which means i am not malnourished), and my ferritin was a bit near the lower end of the normal range but my TIBC excluded a lack of iron. So it looks like i am not iron low.

I took PPIs 5 months ago... no relation to my calprotectin. At first my calprotectin was very low. Last week did two tests of calprotectin and both were bad 60 and 80 mg/kg and i got panicked ...

The biggest advantage i have is probably that i dont have night symptoms. I was told that this is common in some IBD patients.

I took NSAIDS for two weeks only first it was aspirin 2000mg per day ( 4 tablets per 500mg ) and after the aspirin i began taking Pyroxicam. Which helped me but on the third day i was with terrible pain in my right abdomen (lower and higher parts) radiating to my back. I thought it was kidney pain. I got sever diarrhea and nausea. Diarrhea and pain disappeared in 2 days after i stopped them but my stomach problems began - acid reflux and severe nausea. After my stomach was fixed i began to feel pain in my lower abdomen lower left and right just after bowel movement. And then it got severe, i got terrible pain and diarrhea episodes. I had months in which i had only pain without diarrhea..

Guys thank you for trying to help me!

Post Edited (Eastmana) : 9/3/2016 1:21:23 PM (GMT-6)

If you were taking aspirin + piroxicam, it's a wonder you're not having worse problems, like serious stomach bleeding.

As for what you see about Crohn's when you google - really bad cases do happen and those are the ones that are going to be written about in medical journals, but they are rarer. Each person's illness is different. I have known a few people who died from complications of Crohn's, but I know far more people who've died from many other diseases. I've had life-threatening sepsis, but it's been a long time since I've been that sick - more than 20 years.

Try to put your personal situation into perspective. You've had multiple tests which are saying at this point that you DON'T have Crohn's. That should give you comfort instead of making you more stressed. The NSAIDs you've been on could account for your symptoms, and it should get better the longer you've been off of them.

And think about this - you hear of horrible auto crashes where people die or are severely injured, but does that keep you from going anywhere? Of course not. It may make you more careful, but you go about your life. We couldn't function if we worried about everything that could kill or harm us. Even though I have this disease and it does affect my daily life, I've had to learn to take it a day at a time.

Do crohn's patients have terrible symptoms all the time or when they take their meds they can live normally? I just read about some guy here who says that sometimes crohn is so different to diagnose that it takes years of tests to find it. What does it mean that my colonoscopy was useless? It means that even if u had colonoscopy that doesnt mean you can look for something else but it can still be crohn's ? That really scared me as ****.. :X It means that no matter what i do i can never find out if i have crohn's disease :X I dont want to be disabled :(

Post Edited (Eastmana) : 9/4/2016 1:15:58 AM (GMT-6)

Thank you my friend, god bless you , i hope you are right as i am dealing with terrible diarrhea right now. I really hope you are right and thank you for calming me down. I have heard of several cases that takes years to get diagnosis however my GI used to say that crohn's disease nowadays rarely happens to have complications i hope he is right. I know that 15 years ago that disease was pretty nasty. Maybe i must look for coeliac disease as well because my slightly elevated calprotectin might show something like that.. Currently i have terrible diarrhea, maybe anxiety is the cause but i dont know. I bought salofalk (mesalamine) i dont know if i should try drinking it at all... Self-medicating myself might be dangerous i guess.
5 years ago i was dealing with therrible diarrhea but didnt want to make colonoscopy so they said probably u have ibs but we cant know for sure. So i accepted it as ibs and my diarrhea went away within a year or year and a half. So 2 years after that (3 yrs ago) i found out that i dont have diarrhea and stomach problems anymore. And after 3 yrs (now) after the nsaids i got the problems this time it was not diarrhea only, actually it was mainly the pain (5 yrs ago i didnt have pain just severe diarrhea in the mornings). I thought that i had crohn's disease and that thing 5 years ago has been crohns, but i hope i am wrong. At that time i didnt make colonoscopy only blood work. However my symptoms really went away after a lot of time by itself. I hope i dont have crohn's. I know it is rare, in Bulgaria 3 people get the diagnosis every year and we are 8 000 000 population country.

Post Edited (Eastmana) : 9/4/2016 6:13:07 AM (GMT-6)

Hi Eastmana, please don't self medicate! You are more likely to give yourself side effects from the drugs rather than actually treat what is bothering you. What you have sounds very much like IBS.Write down any symptoms you have and revisit it once every two months or so so that you will eventually see if things are getting worse better or staying the same. I'm sorry you are going through this. My advice would be to try to live in the moment as best you can. It's what I try to do every day when I have symptoms that are hard to find answers for. Whether you have IBD or IBS or whatever, try to focus on living. You've done all the tests you could do. There are millions of people that get tested for crohn's and tests come back negative and don't have the disease compared to the very few that get tested, get a negative result and actually have the disease. Also have peace in knowing that you are talking to a forum full of people that have crohn's and we are all saying that what you are describing does not sound like crohn's. Those people who say it took forever to diagnose may have had perfectly fine colonoscopies but in many cases they had fevers, vomiting, weight loss, bleeding, or at least one of the many of the other symptoms that go along with crohn's but tests could not confirm it. I think your anxiety over possibly having crohn's is going to make your symptoms even worse which is going to make your anxiety worse and cause a viscious cycle. I hope you find some relief!

Always happy to talk through your symptoms as you deal with this! Do your best to take it one step at a time! Definitely try the anxiety meds, I hope they help! Maybe look into mindfulness aswell.

Why has your doctor prescribed Salofalk if he said you don't have Crohn's or Ulcerative colitis?

Also can someone explain how to differentiate between colon pain and ileal (lower small bowels) pain ? My pain is about 2 fingers or more under the bellybutton (navel) and sometimes it is slightly in left sometimes it is in right. When i press myself lower lift hard i feel pain, sometimes i dont feel pain when press.

It looks like you are getting some decent feedback from good people on this site. I really think you need to cut back on doing the Web MD stuff where everyone is self diagnosing probably creating more problems then they have at the same time. Plenty people have productive, normal lives and yet...wait for it....have Crohns. I'm sorry if you are going thru some tough times and I understand your concerns trust me. For what it is worth I would unplug the computer for a bit and get a second opinion from a gastro doc. If you doc is calling you crazy then that's not the doc you want. I also feel that you might want to address your anxiety with as much vigor as you do your yet defined gut problems. Best of luck to you. Know that you will find resolution and normalcy again. Chill.

Hi I am sorry to hear you are suffering and I hope you find out what is going on very soon!

I am newly diagnosed and I remember that when I had my calprotectin stool sample test mine was above 600. I was told by my GP that usually under 60 means normal and between 50 and 100 can mean IBS so this may be worth looking into and therefore over 100 is considered as an abnormal level (indicating something like crohn's disease could be present).

I can see what your doctor means by saying it is IBS as its is a condition of exclusion and they have pretty much tried everything.

I think it might be best to share what you have shared on here with your doctor, as they may be able to help you in another way.

However, If you feel there is something wrong it is one of the scariest things but if you honestly feel like you are not being listened to I would get a second opinion and make your voice heard! Remember only you know your own body.

Hope you feel better soon.

i wanted to ask what part of the crohn's patients need surgery for ostomy bag ? I am scared that i might have crohns and i will need ostomy bag :X. I am very scared.