What could i possibly have?

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Hardeep

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Jan 19, 2012
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My story.

I have been viewing this forum for some time now and it has been full of information that has helped me quite a bit.

I have been suffering from bowel problems for many years. When ever i went to my GP, he would always just give me Imodium or Painkillers regardless of how many times i have visited him about my diarrhoea/constipation. I have recently just had a colonoscopy today and a endoscopy last week, they both came back as all clear (still awaiting the biopsy result). So my question, what could i possibly have? for years i have been wondering and have always worried it was something serious but since they found nothing, could this mean i don't really have anything?

Also, since i was a weee lad i've had bowel problems.

My symptoms:
Constant diarrhoea/constipation/steatorrohea (with blood in the stool).
Constant anal seepage/leakage.
Fatigued (Getting worse and worse as i'm starting to close my eyes more and more throughout the day).
I've also started to get weird muscle/joint pains but this could be because i'm fatigued.
Getting progressively worse back pains.
Weight loss (lost 1.5stones in 2 weeks, then another 0.5 stones in 1 week and a half. This was a few months ago).
For the past few months really bad headaches.
Gas cramps (not always)
Also pain in the bottom part of my stomach before and sometimes after i need to go toilet. Also sometimes a burning sensation when i have to go around 4 times within 1 - 2 hours, also sometimes (rarely) it's itchy.
Cold and Flu like symptoms.
Persistent Fever Blisters on my lips.

Also, i have a high WBC count of around 15 last time i saw it, platelet count of 120 - 130 and a low RBC count. (These were recorded a few months back so could be drastically different now)

Thank you for reading :)
 
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Hmmm definitely sounds like something is up. You could have crohns or colitis, or maybe something like Irritable Bowel Syndrome. Either way, you are obviously not completely healthy if you are having these symptoms and a clean colonoscopy does not necessarily prove anything. Many here are diagnosed and often come out with clean results (which excites most of us because it can often mean remission) but it doesn't mean we don't have our diseases. If your doctor is not taking what you have to say seriously then it is time to move onto a new one. Blood in your stools is not a normal thing and he should be looking into some real treatments for you, or have referred you to a Gastro specialist. I really think you should try someone else and ask for a referral. If you have something like crohns and colitis, leaving it untreated could only be making the situation worse. Don't be put off though if it takes a long time for a diagnosis, many here have spent years undiagnosed before their symptoms are finally given a cause.

I really hope for your sake that you have neither crohns or colitis, it is not something one would ever want, but if it turns out that you do (or if you just have questions anyway) feel free to post your worries here. We are a caring forum and will always answer and give support, no matter how graphic the subject.

Wishing you all the best and a speedy recovery,
Fabs
 
Thank you very much for your kind words.

Yes my doctor doesn't take me serious, even got into an argument with him. I have been in and out of hospital since July, bounced around different departments. I had another appointment booked for April to discuss my endoscopy/colonoscopy results but, it appears it has been pushed back to July :S.

I will go see my GP probably next week to see if my endoscopy/colonoscopy biopsy results have been given to him.
 
There is definitely something going on. Before I got diagnosed with Crohn's I was treated for IBS (for @2 years) and my doctor (general) pretty much thought it was stress related. Because I did not have diarrhea, but constipation no one thought of Crohn's. Finally I insisted on some tests and had a CT scan and afterwards small bowel series - this confirmed I was not crazy (as my gastro thought). I agree with the previous post - you should either insist on some more tests or perhaps look for another doctor. I went through 3 gastro doc before finding the 4th that was awesome. Hopefully your doctor will be able to look past the usual diagnosis for your symptoms and figure out what is wrong. Unfortunately it sometimes takes time which we really do not have to spare. Good luck and hopefully someone will have some better advice for you.
 
Thank you for your feedback Tea_Angie.

I will try and push for more tests or i will have to wait to see my doctor in hospital in 5 and a half months :(

Today i feel especially bad, my body hurts all over (stomach muscles joints) and i feel very tired. Also, if i hit something or hurt myself lightly, for some reason it hurts quite a lot, is this due to the low RBC or Platelets? I also have 2 cold sore like spots on either side of my mouth, they have been there for over 3 weeks and have started to bleed today.

Also i lost more weight but, i believe that is due to the laxatives i took on Wednesday in preparation for my colonoscopy.
 
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Hi Hardeep and welcome.

Do you have a contact number on the appointment letter? You should not have to wait that long to get biopsy results. That is really bad even for the NHS!

If not go to your gp and ask if he/she has had any results back, explain that your next appointment isn't for 6 months and ask if he can help you as you are in so much pain and discomfort.

If it gets really too much,go to a&e and get seen there.

I wish you all the best and let us know how you get on.

Sharon Xxxxx
 
Thank you for your reply Shazz.

I can handle the pain most of the time as i have adjusted to it over the months/years i've had it. I'm not 100% sure that my appointment has been pushed back by an additional 3months as the letter was worded terribly. I will phone my GP up on Monday and ask if he has received the results and book an appointment (probably the same day). Also i don't do pain killers unless it's absolutely necessary as i built up quite the tolerance to them at one point.
 
Good luck and let us know how it goes on monday.

I am like you with painkillers. I don't take them unless I really need to.

Hope you feel better soon. Xxxxx
 
Two things come to mind. One is that your biopsies might show something. I had a friend who was having blood in stool and it ended up being a bacterial infection. Also if your crohns is deep into the small bowel they would not see it with colonoscopy/endoscopy because they don't look through the entire small bowel. You could ask for a pill cam.

I would wait for the biopsy results and then talk to your Dr. but be prepared to go to a someone else if he doesn't address your concerns.

By the way Advil and Ibuprofen pain relievers are not good for crohn's and can cause bleeding. I would stop taking them until you figure this out.

I am sorry you are suffering, I hope you find some answers soon!
 
Well, it has been a month since my colonoscopy and i rang my doctor up for the results. According to the receptionist, they had received the results. When i saw my doctor, he then told me that he has actually not received my results yet. Is this amount of time normal? Over a month now? My endoscopy biopsy result came back all clear.

I've started to bleed again and i get a burning itchy sensation now and then. Sometimes the itchiness is extremely bad. Also, i'm finding it harder and harder to sleep as i toss and turn for hours and tend to wake up every 1 - 2hours or so and fall back asleep. Although i fall back asleep right away, i feel this is disrupting my sleep and providing me with less sleep overall which isn't good as i'm loosing blood. Since i started seeing my haematologist, my RBC has been low, i'm not sure how low though. Also, i have been very tired for the past few weeks, i tend to shut my eyes more while out and about. My headaches/migraines have also started to reoccur.

When i pass my bowels it appears to alternate. Sometimes i'm extremely constipated like i have to use all my energy to force it out, whereas other times i have full on diarrhoea. Sometimes i have a little bit of both, bit of constipation at the start then followed by diarrhoea like stools while still feeling i have not completely emptied my bowels.

I've pretty much given up on doctors, since i can handle the discomfort i'm not really all that bothered, i will just wait for my appointment with my haematologist in July.

@Johnnysmom, i do not take any medication unless it's absolutely needed. It's been a few months since i have taken ibuprofen and that was only one pill. But thank you for the information.
 
I've actually only realised now that i've had Steatorrhea for a few years.

When ever i have a bowl movement without constipation it is always very watery, foul smelling and yellow.

Should i be concerned? I have lost weight fast on two different occasions.
 
I'd say 4 weeks for scope results is normal, but if nothing has been received in another 1-2 weeks then time to chase and make a fuss... I know I get frustrated always having to do that too!
 
I've still not rang to see if the results are in, i will wait till around Thursday to ring. I'm not to frustrated at least :p, should be fine as long as they don't ring.

I've been suffering from random back pains always in the same area for a while now. today i had a pain from top of my spine to my neck, it's weird. Also, had a lot of headaches and hit my head a little today and i'm still dizzy.

Also, what are the affects of pro-longed Steatorrhea? I've heard you could have malabsorption with it? what are the symptoms as i can't find a straight answer online :S.
 
Had a blood test done again which showed i still had a high WBC and low platelets again. My doctor believes i get my low platelets off my father. My RBC is low but not that low and is steadily going back up. He said that a special type of Enzyme related to the bowel has pretty much doubled. Does anyone know what enzyme he was referring to? he told me but i forgot. Everything else was fine with some slight abnormalities. Apparently i now gotta wait til my hospital(july :() visit as he can only prescribe me Imodium and painkillers :(.

Forgot to mention i don't have diabetes or anemia and great kidney function :biggrin:
 
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I agree it could be a bacterial overgrowth, as well as a form of IBS. The back ache, head ache, and some of your other symptoms, are major side effects of candida overgrowth, which Iv had for a while. You can have chronic fatigue one minute, dizzy foggy the next, and bursts of energy. But the crohnic diarrhea, wether related or not, does sound like ibs of some sort. Like someone here wrote, your inflammation may have been down, so they couldn't detect crohns, or it could be in a part if the small intestine, where the scope can't reach. Maybe do a simple spit test... For candida, it goes hand in hand with many bowel disorders. Just check out the symptoms online, while you wait for more gastro tests, then at least you can go to him, with your symptoms and questions, and anything relevant.
Also, a symptoms journal might help. I got the idea from here, and it helps to look over what youv eaten-which symptoms after which meds/vitamins, and you could take it to your GI. I record bowel motions as well. Its amazing how much these things can vary with bacterial overgrowth.
Best wishes....hope it's not crohns :)
 
@Irene, hmm, i will defiantly take a look into that. The back ache i had has gone but has been on and off since, i think this is due to the cold weather around here. It's nice and sunny now though :D. All the main symptoms i posted about in my first post are still there. :( I do keep a symptom journal of some sort. I had started a food journal but gave up on it as it got tedious :-|. I've had most of these symptoms since i was a kid like 7 years old. Btw, i've not got my colonoscopy results back yet, my GP has not received them and said it's best to wait for my hospital visit as it was originally discussed that i have my GI and or Haematologist go over them with me.

Thanks for the comment :).
 
I've had diarrhoea about 11 or 12 times today :( getting worried that it just may be crohns. My uncle had it and had around 4 or 5 surgeries by the time he was 30 :(.

Do you think my chances for having crohns to be high from the symptoms i have?
 
At 32, I was diagnosed with irritable bowel, anxiety, and panic. My 'moods' were said to trigger my bowel issue. They didn't do colonoscopies back then. Twenty years later, I finally couldn't take it anymore, and requested a GI consult. Colonoscopy found Crohn's ulcers all over the place. Once I was started on B12, D, and other vitamins, no more anxiety, no more panic. And my hair doesn't fall out anymore.

My advice is to not give up until you find an answer. Even when I'm not flaring, I have symptoms.
 
I agree, don't give up.

I have symptoms all the time, i'm always fatigued(enough to sleep few hours after waking up) and always got muscle pain. I'm lucky i don't get abdomen pain all the time but past week i've been getting it pretty bad.

July i should have all my results and if not have a few more tests for Crohns.
 
I can't believe you need to wait about 6months for the biopsy results. Seems crazy. Have you had your ESR or CRP measured? I agree with others, don't give up and ask for additional testing if needed (MRE, pillcam) Good luck!
 
@Dannysmom, I think i had my CRP checked and apparently it seemed ok, as for ESR, i'm not sure if i had that tested. How would you get that tested? a normal blood test?
 
Forgot to mention that for around 3 months i've been having persistent fever blisters on my lips with 2 cold sores which i had for 1month and a half. Only the blisters keep returning after i've got rid of them. Can IBS cause this?
 
Have you been checked for celiac disease? Untreated celiac disease can cause many of the symptoms you listed. Don't get me wrong, I am not trying to recruit for team celiac. But the symptoms could match up. For celiac disease testing you need to keep eating your normal gluten filled diet, and then get the blood antibody tests done. Often the GI will want to do an endoscopy afterwards and take 5 or so biopsy samples to check them for villi flattening. But the antibodies are first thing to check. Even if all testing for celiac disease is negative you should still go on the GF diet. That's because the tests for celiac disease are not 100% accurate for false/negative results. So the best thing to do is go ahead and try the GF diet for 3 months or more and see if there are any improvements. A food journal can be a big help during this time. Record what you ate including brand name of the product, symptoms, and how you felt that day. Sometimes symptoms don't show up for a couple days. So a journal is very helpful. A simple whole foods diet can also help. The fewer ingredients you are eating the simpler it is to identify a bad one that causes a reaction.
 
I did go on a GF diet and the test came back negative for it.

I changed my diet many times to see but nothing seemed to changed. I've started bleeding again today and have a weird abdomen pain around my belly button. :(.

I was thinking about going vegan for a month hmm.
 
Also i'm taking sudafed as i have blocked sinus, congestion, nose aches all the time since i was a kid aswell. i believe i may have chronic sinusitis. The thing that confuses me is the fact that the box says "each capsule contains 500mg of paracetamol" "Take 2 capsules every 4hours"

I have done so, but isn't that alot of paracetamol? i norm avoid pain killers at all cost unless i'm dieing.

Also getting weird chest pressure, i get this now and then but right not it's happend like 6 times. Doesn't hurt but feels very weird as if my heart skips a beat the feeling. It's in the center of my chest :S i'm getting worried and confused now. Think i'm just over thinking.
 
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Got a phone call from the hospital saying my appointment is back on for April (**** yeah!!)

Also, my abdomen pain has gotten worse over night to the point i couldn't sleep as i sleep on my stomach. If i sleep on my side my nose gets in my way as it's always blocked. It hurts alot and is gradually getting worse. I'm hoping it's not appendicitis so could anyone please list how it normally starts off? I've also appeared to have lost my appetite.

The pain is mostly to the right of my belly button but a little pain to the left and above.
 
Sorry you going through this. I have not had appendisitis myself, but I know someone who has and her symptoms were just not feeling very well, mild stomach pain in the mid belly, and having no appetite at all. It progressed within hours to the point where she was in agony and could not hardly even stand up, the pain then I believe moved to the lower right side. I think everyone is different though and symptoms can be different for everyone. Also, do you have a fever? That is another sign. They also say that if you press lightly on the area where the appendix is suppose to be you would feel extreme pain in the area when it is pressed. I hope you do Not have it and I hope you get some relief soon...








Hardeep said:
Got a phone call from the hospital saying my appointment is back on for April (**** yeah!!)

Also, my abdomen pain has gotten worse over night to the point i couldn't sleep as i sleep on my stomach. If i sleep on my side my nose gets in my way as it's always blocked. It hurts alot and is gradually getting worse. I'm hoping it's not appendicitis so could anyone please list how it normally starts off? I've also appeared to have lost my appetite.

The pain is mostly to the right of my belly button but a little pain to the left and above.
Click to expand...
 
I do feel pain when i press i've also lost my appetite and keep feeling like i'm gonna throw up as i feel like pressure builds up in the back of my throat and i'm going to gag.

The pain isn't as intense as your friends was to not be able to stand up but i do have to put my hand on it sometimes as it throbs. I have the pain in 3 areas. Right and left of my belly button and just bellow my chest. I get regular fevers so i'm not sure if the one i had before will have anything to do with it.
 
Have a look at my story which I have just posted having not read yours. I have just joined. I am using probiotics like Bifidus Infantis 35624 and eating camembert cheese and yoghurts. But to get my bowels working I had to get my blood working first and the good old Neprinol did it for me. Neprinol has Serrapeptase and Nattokinase enzymes along with other systemic enzymes. This is working well for me.
I also got fevers and lack of temperature control. The way I see it is if the blood is not working then nothing else can work properly. Same for the bowels.
I now take Align probiotic(bifidus infantis 35624) and this I have found to actually work.
I gave up processed foods and junk food. I eat oily fish and non processed foods as much as possible and all colours of veg appart from green (I still eat a few green ones like cellary). I don't know if you have a sugar/carb craving but I did. I can cut down on my sugar and cakes now because I no longer have the craving. No more chronic fatigue either.
And nice shaped poos too.
All the best.
 
I think you've posted in the wrong area mate. If you was attempting to alert everyone as to your situation then please create a new thread so it's easier for everyone :)

If you was trying to provide me with advice, i don't understand how you would do that if you have not read my story as you have stated.

So yeah, start a new thread with an appropriate title :)
 
lol i'll save that for later thanks.

I wouldn't mind reading it just the layout is a little hectic. No CSS lol.
 
You misunderstand. I had not read your story when I posted mine but I have read all your story since my posting and was not offering advice but merely trying to be helpful. It is always handy having another viewpoint.
My point is that I have cured a lifetime of bowel symptoms in myself by getting my blood working correctly and getting the correct bacterial balance in my bowels. We are all different so what I did may not work for all, however I think many others will agree it makes sense.
I have always found it beneficial to read about what others have done to solve their health problems.
I don't get your point.

My best wishes.

Hardeep said:
I think you've posted in the wrong area mate. If you was attempting to alert everyone as to your situation then please create a new thread so it's easier for everyone :)

If you was trying to provide me with advice, i don't understand how you would do that if you have not read my story as you have stated.

So yeah, start a new thread with an appropriate title :)
Click to expand...
 
I see. Yes i did misunderstand lol. It was the way you writ it that confused me. Thank you.

Right now my abdomen is hurting alot trying to be a trooper till my doc appointment later.
 
Ok i've got loss of appetite, nausea and really painful abdomen pain.

It started out in a small area then escalated and started hurting around my belly button. i started breathing heavily just by going downstairs and back up. My left abdomen is now hurting alot i can't even turn or bend without it hurting. Is this appendecitis? it kept me up last night and this night as i can't sleep on my stomach cause it hurts and can't sleep on my side due to nose problems?! i have an appointment to see my doctor today at 4:10pm and it's now 12:31am. Should i try and hold out or go hospital in the morning?!

Also the pain has shifted to the lower abdomen parts, both right and left. All day yesterday my right side was hurting now my left. :frown:
 
Your appendix is in your lower right side. It doesn't sound like appendicitis to me but here's a little reading for you.

Should you hold out or go to the hospital? That's hard to say. If you're in excruciating, "Something is very wrong here and it's getting worse" pain, then go to the hospital. That it has shifted is probably a good sign, if anything. But in the end, do what is best for you.

I'm so sorry you're going through this :(

*hugs*
 
Thanks! *hug* it's actually hurting on both sides as well as around my hips.

I didn't think it was appendicitis either but when i tell my friends or family what's wrong with me they immediately jump to that. I might just go in a few hours if it keeps up like this. I can't sleep or walk right.
 
Went to A&E at 6am and got out 9:30am. They did a blood test and while taking it from my left arm, they managed to do one vile but no blood was coming out for the 2nd vial, the doctor kept trying to get the blood to come out but it just wouldn't, does anyone know why that happened? When she took the needle out i fainted. First time i've ever fainted.

The doctor thinks the fact that my whole abdomen hurts a lot, it's not appendicitis but an IBD. They suspect, low and behold, CROHNS :O. They gave me some powerful pain killers that knocked me out over there while i was waiting for my test results which was good as i hadn't slept in 48 hours :).

40 HYOSCINE BUTYLBROMIDE 10MG Tablets. They are very small!

Now i just have to wait for my GI visit next month for all my results and hopefully a diagnoses or at least a prognosis.
 
I am glad your appointment is sooner again. I hope you get some relief soon! ESR is a blood test. HAve you been to a doctor for your nose issues? There may be better alternatives than sudafed with tylenol. I had severe chronic rhinitis for 2 years and finally have it controlled after a 3-day prednisone course, daily steroid nasal spray, steroid inhaler, singulair, no sudafed or caffeine (these caused severe rebound issues), temperature and humidy control.
 
The pain killers make me a little to tired and i don't like it. Went to bed at 9:45am next think i know i'm waking up at 6pm. The pain is hurting more now that they've worn off and i'm getting pain in other parts. Other than that, i'm fine. Just gotta watch out for a fever and vommiting. I've seen a doctor about it and i had nasal spray and congestion medicine for it, niether helped. When i retured to my GP, he was more fixated on the fact that i'm more fatigued than my nasal issue. He said how he can only focus on one issue at a time.

Thank you very much :)
 
Pain killers are not helping :(. Hurts when i walk or bend or even try to sleep. I can't eat much because i feel sick and have a really low appetite. My lower back also hurts. A&E told me to return if the pain gets worse but i think i'll try and contact my GI or possibly see a private doctor tomorrow if pain doesn't subside.

Do you think it's still crohns related? if so, what would be causing it and what treatment would you recommend?
 
I can only speak from my own experience. However, I went through a time when it hurt to move anything at all. I couldn't get out of the car without help, and walking was just horrible. I went back to my doc and told him. He said I probably had Crohn's arthritis. Then I went in for my annual check up with my PCP. I told her I couldn't live this way. She ran a vitamin panel.

Turns out I had little vitamin D, low in B12 and folic acid. She started me on high doses of D and within a few weeks, I was feeling so much better. My energy level is better and the Crohn's arthritis, which I still have, doesn't require more than a Tylenol if necessary.

I can't say this is your problem, but I would have the doc run a vitamin panel. Crohnies are suseptable to malabsorption.
 
I'm pretty sure about 2 weeks ago when i had the test for diabetes he checked for low vitamins and stuff as i was complaining about being fatigued and having muscle ache and join pain. For now, everyone suspects crohns disease so i'll just wait for my visit to my GI/Haematologist. The pain has gone but i've still got really bad tenderness as if i bend or try and get up it hurts. (Hurts when i try to pee or poo). Luckily (i suppose) i have like no appetite. I try to eat atleast 1 meal a day but that's a challenge as it makes me wanna vomit. I don't want to end up losing too much weight all at once like last time.
 
Oh i forgot to ask.

What exactly are flare ups? i see alot of people with different opinions on them. Are they simply just where it hurts more? Like now, the pain i have and loss of appetitite and muscle ache, is this due to a flare up? How are flare ups treated?
 

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