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DOnt know if its really crohns

Hello there!!!

I am an indian. Professionally I am a software professional. I have been facing trouble in digestion since june 2008. Sometimes it would be diarrhea (black watery stool), sometimes constipation, sometimes bloating and gases sometimes all of them.

I was put on some medication for alternate months..like i would take medicines for a month or two then again i would not have them for 4-5 months and again the same.

In 2010, in addition to diarrhea, constipation and gases I also started having sever acidity.

So this time it would be diarrhea for a month, then another month acidity then it might be little consiptation but persistant acidity.

Then mostly I used to have severe acidity and bloated belly only with little or no diarrhea (black watery stool) and constipation.

But since june 2008, I have watery stool only (even till today).

My doctor (who is a MD,Ph.D (Gastroenterology) diagnosed me to have IBS.

I used to take Rabez-D (Rabeprazole domperidone capsules) for a month or so.

I could not gain muscles at all (I have below average muscle)

In October 2013, I undergone colonoscopy and my doctor also did a biopsy of my colon. Same doctor performed the colonoscopy!!

My report said...
"Possibility of IBD crohns cannot be ruled out"

I dont know if I have Crohn's or not and very confused please somebody answer me! Plz!

My symptoms:-

1. I am losing muscles around my lower body (especially by hips).
2. I have very thin legs.
3. I see bathroom twice daily (morning and evening).
4. I dont feel rush to see bathroom fortunately.
5. I have watery stool (sometimes I see mucus in it but very rarely).
6. I suspect to have osteoporosis but never consulted doctors
6. I have been put on Budez CR (Budenosinode) since october 2013.

Will somebody tell me if I really have cronhn's
How to gain muscles on hip and on lower body, too.

Thanks in advance!!
 

nogutsnoglory

Moderator
The issues you describe may be related to or exacerbated by crohn's due to malnourishment and malabsorption but not necessarily.

IBS patients suffer many similar symptoms of IBD but the difference is their tests come up fine, IBD is a disease whereas IBS is functional illness with symptoms that can't be fully explained.

What was it on your report that led them to think you may have crohn's?
 
Thanks nogutsnoglory!!
He carried out histopathological analysis on a small ileal tissue
My diagnosis report read like this:-
"ACUTE ON CHRONIC ILEITIS WITH ULCER.
IBD-CROHNS CAN NOT BE RULED OUT"

Any Guesses??
 
Somebody please respond.......
I had taken, Budez CR for a month!
==============================
I am taking following tabs now
Mesacol 800
Doxypal DR-L

Since 20 days I have 1 motion per day (morning).
But I pass black-watery stool, with a very strange odour. SOmetimes I find undigested food in stool also.
I request, somebody please respond, if I have crohns desease, coz my doctor said, I have very mild infection of crohns.
Please tell me, if an individual can have mild crohns desease ?

I'll be grateful to see replies!!
 
You can have mild crohns... I would schedule a follow up visit with the doctor and write down the questions you have to address with him, especially if your symptoms are continuing and are worrisome or interfering with your functioning.

I pass undigested food sometimes -- I find it happens when I go too heavy on fiber. Sometimes I can handle it, sometimes I can't.
 
You also may want to ask about a small bowel series or endoscopy to check other areas for evidence of Crohn's.
 
As you might have already read above my dianosis report read:-

"ACUTE ON CHRONIC ILEITIS WITH ULCER.IBD-CROHNS CAN NOT BE RULED OUT"

1. Since its inception, fortunately, I did not have abdominal cramps.
2. Also I never see washroom frequently (ONCE or TWICE at the most).
3. I lost 4 kgs of my weight since the inception of symptoms (not diagnosis), it happened over a peroid of 4 months.

All my problem is:-
1. I have black stool watery diarrhea since the diagnosis and little gases.
2. I have lost complete muscles (mostly lower body).

I had following medicines:-
budesonide
Mesalazine
Prednisolone

And right now I have been put on the following:-
budesonide
Ofloxacin

I dont know how can I consider that I am remission?

Because,

1. Since its inception, fortunately, I did not have abdominal cramps.
2. Also I never see washroom frequently (ONCE or TWICE at the most).
3. I lost 4 kgs of my weight since the inception of symptoms (not diagnosis), it happened over a peroid of 4 months.

and my following genuine problems are still there:-

1. I have black stool watery diarrhea since the diagnosis and little gases.
2. I have lost complete muscles (mostly lower body).

I am really very very confused and upset, somebody please help me, How can I conclude that I am in remission or not?

Wish you all a very happy soothing new year!
-------
Thanks in advance!
 

valleysangel92

Moderator
Staff member
Mild crohns is certainly possible, like many illnesses crohns can be mild, moderate or severe. It could be that your crohns was diagnosed just early enough to stop it causing you any severe symptoms, also, symptoms don't always co-relate to the severity of inflammation.

Ileitis is inflammation in the ileum, and would not be caused by ibs as ibs does not cause inflammation.

However, crohns is not the only cause of inflammation in the intestines so it is important to have biopsies taken to be examined more closely, also, bloods should be used to look for other signs of inflammation.

You should also consider having your vitamin and mineral levels checked ( eg vit. A - D, iron, calcium, potassium, zinc etc) since muscle wastage is a sign of severe malnutrition which can, in itself, make you feel very unwell and is potentially very serious.
 
Hey Nims22!
You are so nice! Thanks for your replies and yes, its indeed helpful to get more inputs..well..sincerely speaking..honest inputs! and you always do just that!
Cheers!
 
Hey Nicola (I guess, thats ur name),
Thank yo uvery much. You have described it a lot in here. I'll definitely follow your advice.
Please keep replying, if unfortunately, i ask anymore questions!!
Cheers
 
Hey Nicola,
I am plannin gto visit my doc soon!
I may post some more questions here!

One more thing I'd like to put forth..how should I go about checking the minerals and vitamins level in my body(blood)!
I mean how should I do it on my own...hmm..actually how should I approach a pathologist ? what should I ask him..and how (or who) should anlayze the pathological reports?
Next, will it be ok if I ask my GE practicioner to don endoscopy..won't it sound offensive if I ask him (perhaps suggest him) for an endoscopy?
I think it may be a prestige issue for him...actually I am confused!!

Thanks in advance!
 

valleysangel92

Moderator
Staff member
For checking your vitamin and mineral levels I would ask your doctor, don't try to do it by yourself, the results can be hard to interpret and self medicating with supplements can be dangerous. You should always run any medical queries past your doctor, even the advice here isn't a substitute for medical advice.
If you feel an endoscopy is needed then you need to go to your docotor and explain your reasons, for example, if you had heartburn, and endoscopy could be used to see if you have an ulcer or a problem with reflux. If you are worried that directly asking for one will offend your doctor (which it shouldnt) you could ask if they think an endoscopy would be a good way to go in your case.
 
I suspect to have osteoporosis but never consulted doctors
What makes you think you have osteoporosis? Osteoporosis causes no symptoms, so the only way you can know if you have it is by a Dexa scan of your bones. Do you have risk factors that make developing osteoporosis more likely? For example, certain medications can make it more likely you'd develop osteoporosis. Have you had a lot of fractures? If you have, that may be a sign of osteoporosis, but you'd still need a scan to confirm.


One more thing I'd like to put forth..how should I go about checking the minerals and vitamins level in my body(blood)!
I mean how should I do it on my own...hmm..actually how should I approach a pathologist ? what should I ask him..and how (or who) should anlayze the pathological reports?
Next, will it be ok if I ask my GE practicioner to don endoscopy..won't it sound offensive if I ask him (perhaps suggest him) for an endoscopy?
I think it may be a prestige issue for him...actually I am confused!!
I'm not sure if it is different where you are, but generally you do not approach a phlebotomist yourself, your doctor would order the blood tests for vitaimins and minerals (and various other things) on your behalf. Usually, the results will be sent back to the doctor who ordered them, who will interpret the results and explain them to you.

Some doctors do seem to take offence when patients make suggestions about their medical care. But you should make clear that you are still getting symptoms and that you want to know what is wrong with you. It will be up to your doctor to decide whether an endoscopy is the next step; he might have other tests in mind. If you don't agree with his decisions though, you could see if you can get a second opinion from another doctor.

From the medications you list, it sounds like your doctor has already started treating you for Crohn's. You really need to get a clear explanation from your doctor - whether you do have Crohn's and how severe it is can only be confirmed on the basis of your test results. It sounds like your doctor has not been giving you adequate explanations - these are issues he should have covered in your appointments, not things that you should be left to figure out for yourself. I think you really need to make clear to him that you are unsure about your diagnosis and that you are still getting symptoms and would like further testing and treatment in order to try to improve your situation.

Of course you can come to this forum and ask questions, and many people here know a lot about Crohn's and can provide you with valuable information, but we can't replace the role of your doctors. We can't interpret your test results, and we can only make suggestions as to tests that might help you; ultimately it will be your doctors' decisions which direct your care.

I hope you get some satisfactory answers soon.

Btw - were you on medication when you noticed your muscles wasting? Prednisolone and other medications can cause muscle loss.
 
Thanks Nicola,
Here is what I have planned:-
1. To check the mineral and vitamin levels.
2. To get an endoscopy done.

What else shall I do to zero down on the diagnosis.
I hope, you must have seen what's written in my earlier post. I am copying the same here for you:-
"ACUTE ON CHRONIC ILEITIS WITH ULCER.IBD-CROHNS CAN NOT BE RULED OUT"
Are you with me, if I say, "My doctor is not sure if I really have crohn's"
He has been treating me with high dosage of "budesonide".
I have taken 5 pills for 40 days.
And one medicine "Mesalazine" .. have you heard about it ?
I have been taking 4 pills for 30 days.
To conclude he has been traeting me with all the meds recommended for crohn's.
My colonoscopy report reads as:-
Colonoscope passed upto distal ileam
Rectum is normal
Sigmoid is normal
Descending is normal
Transverse is normal
Ascending is normal
Caecum and ileocacal valves are normal
Distal ileum shows 3-4 mm multiple apthous ulcers.

When I asked him about the severity of the crohn's in person over an appointment ,
he said, I can have all the fibrous food and my crohns is mild. So dont worry!

He has also stopped my medicines. I am on no meds right now.
But I dont know, if I am in remissions or what ?

I dont get abdominal cramps, I only use washroom once and rarest of the rare twice.
But I am loosing my muscle, I am becoming thin.
Also my weight has reduced. But since last one month its constant. My muscles are not improving.
I eat chicken, eggs and normal diet. Sometime I feel weak (very rarely).

And I still get loose stools (near black may be dark greenish loose stool) and sometimes feel bloated. I have not lost my hunger. I eat enough.

But thse were my symptoms since an inception. And these symptoms are stil there.

So, Nicola/UnXmas, please tell me, if I am in remission. Have my symtoms of crohns improved? SHall I stop worrying?

How can I increase my weight and gain muscle, I really eat very normal diet including chicken/eggs/wheat/rice even milk. I dont know..if its malabsorption also?
How to check that. Or am I worrying to much like a skeptic nut ?

Please take some time to read carefully and advise me!
God bless you all!

Cheers!
 
Thanks UnXmas,

I have taken "Prednisolone" for 5 days only. Two tabs a day. So, 10 tabs in all.
But I have lost muscles even before I was diagnosed and started with medicines.

I have asked once my doctor about teh severity of crohn's in my case. In reply to that he said, its mild. And further he advised me not to worry about the ulcers and eat normal indian food.
My food includes wheat/rice/vegetables everyday. And chicken and egg thrice a week.
I mostly have eggs in breakfast but not regularly.
My doctor also asked me to go with fibre food like wheat. He said its ok if I eat it.

Is it ok to have this diet, I mentioned above ?
If I eat normal diet, why dont my muscle improve. I had left exrcising a long ago. May be for 3 years or so I have never seen gym.
If working out and training on muscles will help me improve my muscles ? Or I have malabsorption problem ? If it is so, how can I diagnose that ?

And I said i have osteoporosis, cause I feel crakling sound in joints some times. I don thave factured bones. I have not done any tests to envisage the osteoporosis. DO u suggest me to do once ?

My wight has reduced by 6 Kgs. I have measured my weight in the month of February 2013.
It was 68 Kgs. I checked it in October 2013. It measured 64. In november it measured 63. And this month I measured, it is still 63. Shall I say my weight is not reducing. Shall I say, I am normal as far as my weight is concerned. I am 31 years old. I am thin since my childhood. I mean I have semi-average muscles. But it has really reduced. Actually the muscles on my hips, lap and legs has redcued tremendously.

I started with diarrhea in the month of July 2013.
I have loose stool with black OR dark green colour. But definitely not loose motion.
Is it diarrhea? I use wash room only once or very rarely twice. I dont get abdominal cramps.
And I have lost muscles. MOstly lower body.
These were my symptoms in july 2013 and even now they are there. My doctor has stopped my medicines. He says that I am normal now. But I am not satisfied myself coz my symptoms have not all gone. Shall I wait to see any improvement.

Am I in remission now ? Was I always in remission ? Is it not crohn's really? Is it something else ?

Or is it crohns?

Please read my above post (one before this post). There I mentioned about y colonoscopy report. Please read it and please tell me if I really have Crohns ? Or it is a mild crohns ?

Please answer all my querries! God bless you all!
Thanks in advance!
 

valleysangel92

Moderator
Staff member
I am familiar with mesalazine. It is one of the milder and safer drugs used when treating crohns or ulcerative colitis. It is used when treating milder cases of crohns as it is topical, meaning it only works on certain areas, and these drugs only treat surface inflammation. They are favored by some as they generally have fewer risks and side effects than other crohns related medications.

Why is it you feel the need for an endoscopy to be done?

Looking at the results you posted, it does seem that you have a mild case as your doctor says and this may be why he has now taken you off the medication, especially if you are not having any major symptoms. It is important however to monitor your bloods for any signs of inflammation as the sooner any recurrence is stopped the better it will be all round.
You may also be suffering with a touch of IBS which can cause loose stools. Have you ever been tested for coeliac disease? A simple blood test can give an indication of whether this may be a cause of your symptoms.

If you are concerned about your weight you need to bring this up with your docotor, if it has stabilized now then they may not find it much cause for concern but it is best to bring it up anyway.

Try not to self diagnose or worry about individual symptoms too much, it is natural to feel concern but remember that stress and crohns do not mix well together, so try not to stress yourself out. Keep track of any symptoms that worry you with a symptom diary and bring them up with your doctor at your next visit.
 
And I said i have osteoporosis, cause I feel crakling sound in joints some times. I don thave factured bones. I have not done any tests to envisage the osteoporosis. DO u suggest me to do once ?
Osteoporosis causes no symptoms, it does not cause crackling sounds. So I don't think you need to worry about osteoporosis at all.
 
From the information you've given, it seems you have a mild case of Crohn's. A little uncertainty remains over this, but it sounds like that's about as definite a diagnosis as you're going to get at the moment. If your doctor has enough confidence in the diagnosis to have been treating you with the medications used for Crohn's, I assume that means your doctor doesn't think further testing is necessary.

We can't tell you if your Crohn's is in remission or not. remission is where no active inflammation can be found on tests. Some people with Crohn's do still experience symptoms when their tests show they have no active disease, though usually the symptoms would be more mild than when they are in a flare. To know whether you are in remission, you would probably need an endoscopy and/or colonoscopy, though less invasive tests such as blood tests can also provide clues about the current state of your disease.

I have asked once my doctor about teh severity of crohn's in my case. In reply to that he said, its mild. And further he advised me not to worry about the ulcers and eat normal indian food.
My food includes wheat/rice/vegetables everyday. And chicken and egg thrice a week.
I mostly have eggs in breakfast but not regularly.
My doctor also asked me to go with fibre food like wheat. He said its ok if I eat it.

Is it ok to have this diet, I mentioned above ?
If I eat normal diet, why dont my muscle improve. I had left exrcising a long ago. May be for 3 years or so I have never seen gym.
If working out and training on muscles will help me improve my muscles ? Or I have malabsorption problem ? If it is so, how can I diagnose that ?
It is ok to eat your normal diet in the sense that it won't do you any lasting damage. Many people with Crohn's find they feel better after making some dietary changes however. Fibre can make symptoms worse in some people, so reducing high fibre foods (most fruit and vegetables, whole grains, nuts and seeds) can sometimes improve symptoms a little. Rice, chicken and eggs sound like good foods for you to keep eating if you find fibre to be a problem.

Some people find eating soft, bland foods helps their symptoms. In more extreme cases, a short time on a liquid-only diet can help, though you'd probably need to talk to your doctor about it, and you wouldn't normally try a liquid diet unless your disease is very severe. There are numerous other diets that some people claim help with Crohn's symptoms, you can find out about them on the Diet forum of this website.

Malabsorbtion is again something your doctor would have to test for - we can't tell you whether you are experiencing that. If you are struggling to keep your weight up, it is a possibility, but the treatment would involve trying to get your Crohn's under control, so obviously that will require medication. But it doesn't seem that your weight has dropped that much. If you feel your muscles have wasted, you can discuss it with your doctor. Have you reduced the amount of exercise you do? Your muscles may not be wasting due to disease, it may be the result of being less active. Do you feel particularly weak or struggle with basic activities (going up stairs, for example)?
 
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valleysangel92

Moderator
Staff member
I agree with UnXmas .. I see no reason to suspect you have osteoporosis.. Try to resist looking for answers with google etc, information is often misleading and or plain inaccurate and you should always seek advice from doctors. Please dont self diagnose, it can be very dangerous. Everyone gets cracking/clicking joints at times. it is just the bones sliding against each other, try not to worry.
 
Why is it you feel the need for an endoscopy to be done?
I feel I should do it. I feel bloating above my navel and towards left. Also, I have gases and acidity alternatively. I have IBS since July 2008.
I had only constipation and black stool alternatingly till 2010 August.
Since August 2010 I started having acidity and is still there with me.

In short I think I should go for an endoscopy to check the cause of bloated feeling, gases and acidity. Also, I need to check any inflammation towards stomach!

Thanks for your advise Nicola!
Cheers!
 
We can't tell you if your Crohn's is in remission or not. remission is where no active inflammation can be found on tests. Some people with Crohn's do still experience symptoms when their tests show they have no active disease, though usually the symptoms would be more mild than when they are in a flare. To know whether you are in remission, you would probably need an endoscopy and/or colonoscopy, though less invasive tests such as blood tests can also provide clues about the current state of your disease.

SInce I did not have any abdominal cramps, frequent trips to wash room..I dont know how to check if I am in remission. Also, the only symptom I have till now (and since the beginning..which is not going at all) is, "muscle loss and loose stool (dont knwo if it is diarrhea)"
Shall I call it as a diarrhea??

Hence I am confused..if I am in remission or not.
Whether or not I eat fibre or complex food , I do get loose stool (black or dark green -- dont know if it is diarrhea ???). How can I track..if any food is good or bad coz, I always have loose stool (black or dark green).

Some people find eating soft, bland foods helps their symptoms. In more extreme cases, a short time on a liquid-only diet can help, though you'd probably need to talk to your doctor about it, and you wouldn't normally try a liquid diet unless your disease is very severe. There are numerous other diets that some people claim help with Crohn's symptoms, you can find out about them on the Diet forum of this website.

"I dont know which food is good or bad for me as I always I get loose dark or greenish stool"


Malabsorbtion is again something your doctor would have to test for - we can't tell you whether you are experiencing that. If you are struggling to keep your weight up, it is a possibility, but the treatment would involve trying to get your Crohn's under control, so obviously that will require medication. But it doesn't seem that your weight has dropped that much. If you feel your muscles have wasted, you can discuss it with your doctor. Have you reduced the amount of exercise you do? Your muscles may not be wasting due to disease, it may be the result of being less active. Do you feel particularly weak or struggle with basic activities (going up stairs, for example)?
No I dont feel particularly weak at all. But I feel drowsy/sleepy sometimes!

Thanks for your advice!
Cheers!
 
I understood that I need to check myself for celiac disease also as suggested by Nimss and you guys.

1. What actually is a diarrhea is it only the thik and loose stool (black or greenish dark) ?

I cant get enough sleep during night. I get less sleep since July/August 2005.
I sometimes stay awake till 2-3 AM at night.
I struggle to get sleep sometimes. My sleep problem is there a long long before Crohn's.
Is lack of enough sleep is a problem for my chronic acidity/IBS. I have been facing IBS since July 2008.

Is sleep a red culprit for IBS/acidity and my todays condition? Or is it a condition for feeling drowsy?
is sleep the main reason behind bloated belly and acidity ?
 

Trysha

Moderator
Staff member
Perhaps you might benefit by seeking another GI opinion.
It is a little unusual after a crohn's diagnosis to stop medications.Did you ask your doctor why he did this?
IBD patients usually have extensive blood work such as CBC, Electrolytes, Vitamin B12 assay, iron levels, inflammatory markers such as CRP and ESR among other things.
Have these been done for you.
Also once crohn's has been diagnosed and remission achieved it is usual for patients to be continued on some kind of medication to maintain the remission.
If you are bleeding then it is cause for further investigations, you report having black stools, has this been tested for blood?
Some vegetables and fruits can cause black stools.
From your reports it seems that you are worrying a lot about your symptoms and this suggests a long talk with a GI specialist at which time you could mention about another colonoscopy and endoscopy as well as appropriate blood work analysis.
Hope this is helpful to you.
We are all patients like you and are not doctors but try to help by sharing our stories.
Feel better soon
Hugs and best wishes
Trysha
 

valleysangel92

Moderator
Staff member
Okay... Well you need to discuss this with your doctor, they may suggest starting with a less invasive test such as an mri scan.
By acidity I assume you mean heartburn? This is common and can be caused by any number of things.

You may need to have an MRI or small bowel follow through as there will still be an area that the camera will be unable to reach.

Drowsiness may just be a result of not getting enough sleep, or it could be that you have low iron or another vitamin or mineral deficiency.

You need to discuss all of this with your doctor, we can only give our opinions based on our own experiences and since crohns is different for everyone we cannot judge your situation perfectly. Please write down your concerns and speak to your doctor. If your hospital has an IBD nurse, you could contact them and see if they can ease your mind until your appointment.
 
Perhaps you might benefit by seeking another GI opinion.
It is a little unusual after a crohn's diagnosis to stop medications.Did you ask your doctor why he did this?
Yes, I asked him this. He said, my case of crohn's is not that serious, its a mild one. So he has decided to stop, nothing special. He said, I have to follow medications further only if I have symptoms again.
But Tysha, hope you have understood my confusion and worry!!!
"I dont know if I am in remission or what? Coz for me, my symptoms are still there,,,
I pass near black (sometimes greenish) loose stool. And I'd lost muscles especially on lower body.
After so many medicines, neither has my loose stool stopped, nor my muscles improved,
So, I dont know if I am in remission and if I can resume my normal life style ??"
.

And, with all the due respect to your honest suggestion, I know you (and all others here) are not doctor. We are all people with IBD. And also I understand that we suggest/explain things based upon our experiences.
Since I am new to this forum, I have lot of confusions, worries about my symptoms, hence a long discussion. But trust me, everyone, so far, has given me very good explanation, an dI am happy to be here!!

IBD patients usually have extensive blood work such as CBC, Electrolytes, Vitamin B12 assay, iron levels, inflammatory markers such as CRP and ESR among other things.
Have these been done for you.
Also once crohn's has been diagnosed and remission achieved it is usual for patients to be continued on some kind of medication to maintain the remission.
If you are bleeding then it is cause for further investigations, you report having black stools, has this been tested for blood?
Some vegetables and fruits can cause black stools.
I have not undergone any of such tests. In fact, I got to know about them just now. I had just done "occult blood test" once, to check if I pass blood in stool, but fortunately it turned negative. I had done this in August 2013, before I was diagnosed for crohn's. Is it necessary to do it again? How frequent should one do such tests?
What is the best test to check blood in stool?
"CBC, Electrolytes, Vitamin B12 assay, iron levels, inflammatory markers such as CRP and ESR", What are these tests ?

From your reports it seems that you are worrying a lot about your symptoms and this suggests a long talk with a GI specialist at which time you could mention about another colonoscopy and endoscopy as well as appropriate blood work analysis.
Hope this is helpful to you.
We are all patients like you and are not doctors but try to help by sharing our stories.
Feel better soon
Hugs and best wishes
Trysha
Thanks you so much, you are so kind yo eexplain...wish you the best regards, and hugs too!

Will you please answer me for the following?

How exactly you might define diarrhea ?
If not getting enough sleep is a reason for acidity (not heart burn, but reflux) ?
Can severe acidtiy (whcih has not been cured completely since 3 years, but only managed), coz some damage to intestine.
Do i need to do an endoscopy to find out the reason for acidity?
Can an endoscopy investigate for acidity and other evidences of crohn's or any other disease at a one go...or at the same time ?

Thanks in advance!!
 
By acidity I assume you mean heartburn? This is common and can be caused by any number of things.
No, it is not heartburn.
See I get a weird test in my mouth. It turns little whitish. And mostly (generally regularly) I get mouth ulcers very often. I mean all this by the word acidity and not heartburn. Yes sometimes I do get reflu.
My doctor has been using, "Rabeprazole" on me to manage my acidity alongwith folic acid supplements.
Is lack of sleep a reason for acidity or it has no connection with it ??
You may need to have an MRI or small bowel follow through as there will still be an area that the camera will be unable to reach.
Thanks for your suggestion..but why I need to do MRI or small bollow investigation??
What might it detect ?

Drowsiness may just be a result of not getting enough sleep, or it could be that you have low iron or another vitamin or mineral deficiency.

You need to discuss all of this with your doctor, we can only give our opinions based on our own experiences and since crohns is different for everyone we cannot judge your situation perfectly. Please write down your concerns and speak to your doctor. If your hospital has an IBD nurse, you could contact them and see if they can ease your mind until your appointment.
Thanks! Thank you very much...Thanks for replying so often. Its really amazing (and I do really appreciate), to see yuor regular replies. Please keep it up. It releives me out of tension.
I think my doctor is cunning enough. He wont indulge in long discussion and always rush ends the discussions. he is quite famous though, and charge a hefty amount for a visit.

Please answer one thing..
How will you define diarrhea, exactly ?

Thanks in advance...cheers!!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Crohno have you had a stool test (occult blood stool test) done for blood since your stools are often black?
 
Crohno have you had a stool test (occult blood stool test) done for blood since your stools are often black?
Hey Jenni,
Yes I had undergone occult blood stool test in August 2013, before I was diagnosed with Crohn's.

The result of the test was negative. There was no blood found in my stool.
Is there any more elaborate test for the same purpose?

Thanks in advacne!
Cheers
 

valleysangel92

Moderator
Staff member
No, it is not heartburn.
See I get a weird test in my mouth. It turns little whitish. And mostly (generally regularly) I get mouth ulcers very often. I mean all this by the word acidity and not heartburn.

This is not necessarily anything to do with acid, you can get ulcers as a sign of simply not being well. Again this could be a symptom of vitamin and mineral deficiencies, and because of that, I think you should have that checked before you go on to other, more invasive tests. Mouth ulcers are also common in those with IBD, but they don't necessarily mean there is inflammation in the upper gi tract.

Yes sometimes I do get reflu.
My doctor has been using, "Rabeprazole" on me to manage my acidity alongwith folic acid supplements.
Is lack of sleep a reason for acidity or it has no connection with it ??

The only way I can think that lack of sleep would affect the 'actidity ' is that you would be exhausted and it might make your body display symptoms of being run down such as mouth ulcers.

Thanks for your suggestion..but why I need to do MRI or small bollow investigation??
What might it detect ?

I suggested this because they are less invasive than endoscopies and they can see the whole of your intestine, where as a colonoscopy or endoscopy can only see so far. Even if you had both at once, there would still be a gap in between that they cannot reach. This could mean that inflammation goes undetected.

Drowsiness may just be a result of not getting enough sleep, or it could be that you have low iron or another vitamin or mineral deficiency.


Thanks! Thank you very much...Thanks for replying so often. Its really amazing (and I do really appreciate), to see yuor regular replies. Please keep it up. It releives me out of tension.

I will respond when I can but I cannot promise it will always be this fast. There will also be questions that we just can't answer here.

I think my doctor is cunning enough. He wont indulge in long discussion and always rush ends the discussions. he is quite famous though, and charge a hefty amount for a visit.

If you aren't happy with the care you are receiving you have the right to seek out another doctor.

Please answer one thing..
How will you define diarrhea, exactly ?

I do not know the medical definition of diarrhea. Generally though it is thought to be stool that is loose or very soft, watery or more frequent than what is normal for that person.

Thanks in advance...cheers!!
 
If you aren't happy with the care you are receiving you have the right to seek out another doctor.
Thank you so much Nicola!

How should I prepare myself to see another doctor. Like, I should be able to tell the other doc about my entire history. Some of which he may not hear well or some of which might get unnoticed. I always have this fear, that my new doctor migh tnot listen to my medical history properly and I might not get the correct treatment. How toovercome this fear. OR
How to prepare the agenda, what all things should I cover before booking an appointement with the new doctor.

Thanks in advance!
 

valleysangel92

Moderator
Staff member
You should have a list of questions and concerns that you would like addressed, and you should have a general knowledge of your medical history and the results of tests you've had.

I cannot tell you how to go about looking for a new doctor as I am not familiar with the medical system in your country.
 
Check with your doctor/ specialist....
Endoscopy is good, mine found I have erosive duodenitis... Major reflux and acid deteriorating my teeth...
I would get a MRI test for sacromilitis if you suspect any form of arthritis....
Get a MRI of your smaller bowel whilst your there...



Sent from my littlefishes
 
Check with your doctor/ specialist....
Endoscopy is good, mine found I have erosive duodenitis... Major reflux and acid deteriorating my teeth...
I would get a MRI test for sacromilitis if you suspect any form of arthritis....
Get a MRI of your smaller bowel whilst your there...
Sent from my littlefishes
Thanks a lot for your kind suggestion!
I have been diagnosed with milder crohns and I have to conclude if I am in remission or not. I have been put on some rigorous medicines, if u could read above please. But still no luck.

My symptoms are never improved. I dont know if I am in remission or not.
And if I am mis-diagnosed, I am afraid.

Thats why I was thinking of changing my doctor and goping for new tests, people here suggested MRI mostly and an endoscopy, too.

You tell me mate, how must one determine if he/she is in remission..how would you have concluded if u are in remission, if you were me!

Thanks in advance!
 
Check with your doctor/ specialist....
Endoscopy is good, mine found I have erosive duodenitis... Major reflux and acid deteriorating my teeth...
I would get a MRI test for sacromilitis if you suspect any form of arthritis....
Get a MRI of your smaller bowel whilst your there...
Sent from my littlefishes
I do not get reflux regulalry. I might get reflux once or twice in a month.
But I get some bitter (may be some weird types..but precisely bitter) test in my mouth, and dry mouth and I get mouth ulcers most of teh times.

Is this a symptom of acidity ?

I have undergone colonoscopy and diagnosed with mild infection of crohn's.
Do you think I should also go for an endoscopy ?

Thanks in advance!
 
You should have a list of questions and concerns that you would like addressed, and you should have a general knowledge of your medical history and the results of tests you've had.

I cannot tell you how to go about looking for a new doctor as I am not familiar with the medical system in your country.
Thanks Nicola!

I do keep/maintain a list of question before going to see my GE surgeon. He answers me, too. But i think I do not get enough attention from him. It may be because he has a long queue of pentients waiting outside. He is very famous (MBBS, MD, Ph.D(Gastroenterology)).

I think now he is just after money..but I must admit he has helped me manage my IBS (not IBD) very well.

Generally we book an appointment and we visit at the time allotted to us and we further do the discussion OR take consultation from the concerned doc...this is how the medical system at my place. Please suggest something.

My main concern is, I should put forth a suggestion from me to my doctor such that he don't feel offended coz, if u try to challenge somebody treating you for some desease, you migh tbe in very bad trouble!

Thanks in advance!
 
Most people will find the bad bugs/bacteria/flora is too high, thus the acids and the additional damage. The lining of your intestines then lays down and gets smooth so there is very little nutrition being absorbed. The gas and bloating are usually bacteria eating away and making a nice home in there. Ask to try Fluconazole. If it hurts like you swallowed fire, keep taking it, it's working, that will pass by the second or third day. These additional symptoms are usually the candida or other issues that have taken over.
 

valleysangel92

Moderator
Staff member
Thanks Nicola!

I do keep/maintain a list of question before going to see my GE surgeon. He answers me, too. But i think I do not get enough attention from him. It may be because he has a long queue of pentients waiting outside. He is very famous (MBBS, MD, Ph.D(Gastroenterology)).

I think now he is just after money..but I must admit he has helped me manage my IBS (not IBD) very well.

Generally we book an appointment and we visit at the time allotted to us and we further do the discussion OR take consultation from the concerned doc...this is how the medical system at my place. Please suggest something.

My main concern is, I should put forth a suggestion from me to my doctor such that he don't feel offended coz, if u try to challenge somebody treating you for some desease, you migh tbe in very bad trouble!

Thanks in advance!

Unfortunately almost all doctors worth seeing will have long waiting lists. it is unavoidable in most cases. You just have to decide who is and isnt worth that wait.

I cannot suggest something as I do not know your medical system and I do not know anything about any of the doctors there so I cannot tell you where it is best to go. In my country, we do not refer ourselves directly to a certain doctor, we go to our GP ( primary care practitioner) and they refer us on to a specialist. If we are unhappy with that specialist we can ask for a second opinion but it is very rare that we are able to ask for a specific person unless we have seen that person before.

Only you can decide if your concerns are worth risking offending the doctor. Most doctors I've met have been open to sensible suggestions and to questions, and have not been offended at all, in fact they have praised me on taking control of my health. IF your doctor is offended then they should not allow it to affect your treatment, if they do, then they are being unprofessional and I would seek out a new doctor anyway.
 
Yes I think you should ask for as many tests as possible.. To best treat your condition... I wouldn't be able to have most of the meds as my stomach disagrees with them and gives me the acid taste in my mouth, plus I have had over $12k of damage in my mouth in 5 years...

I live in Australia...


Sent from my littlefishes
 
Hello there,

I still seek your opinion, in helping me out. I just want to realize if I am in remission OR not. I hope you have read all my posts above. Please let me know, how to judge if I am in remission, since my symptoms (though they are not sever) never go.

Also, how must one manage the intermidiate loose motions, gases, acidity, colds, fever, stc.
I mean if somebody is being treated with an IBD, and if along the way, he/she cath up with any of the above. How should they approach that particular conition. Shall he/she go to any ordinary doctor and have regular medicines prescribed by that doctor ? Or he/she should first go to there GE surgeons and then visit a GP or an ordinary doctor ?
 

valleysangel92

Moderator
Staff member
Hello there,

I still seek your opinion, in helping me out. I just want to realize if I am in remission OR not. I hope you have read all my posts above. Please let me know, how to judge if I am in remission, since my symptoms (though they are not sever) never go.

/QUOTE]

Only a doctor can tell you if you are in remission, you need to have clinical testing. The presence of symptoms cannot rule out remission as there are other conditions, including ibs, which you've already said you suffer from, which can cause many of your symptoms.
 
remission should mean you are currently free of symptoms and no infections, normal bowels... most of us measure by our ability to venture out in public where we don't know where all the bathrooms are. Normally risky :)
 
remission should mean you are currently free of symptoms and no infections, normal bowels... most of us measure by our ability to venture out in public where we don't know where all the bathrooms are. Normally risky :)
Thanks durwadian,
Exactly.."if one could venture out in public". This worries me more.
By the grace of god, I never had more than 2 bowel movements, very rarely three.

But mostly, I see the washroom only once..in morning! Thats it.

Before diagnosis and treatment, I would go to bathroom only once and even after the treatment I am going there, again only, once.

But I am not able to gain muscles, and still have loose stool (may be diarrhea).
This is my confusion..how can I decide if I am in remission or what?
Please suggest me something! I request anybody for that matter!

Cheers!
 
Thanks durwadian,
Exactly.."if one could venture out in public". This worries me more.
By the grace of god, I never had more than 2 bowel movements, very rarely three.

But mostly, I see the washroom only once..in morning! Thats it.

Before diagnosis and treatment, I would go to bathroom only once and even after the treatment I am going there, again only, once.

But I am not able to gain muscles, and still have loose stool (may be diarrhea).
This is my confusion..how can I decide if I am in remission or what?
Please suggest me something! I request anybody for that matter!

Cheers!
You've already been told in several posts on this thread that the only way you'll know whether or not you are in remission is by a doctor carrying out tests on you. No one of this forum can tell you whether or not you are in remission.

Also, how must one manage the intermidiate loose motions, gases, acidity, colds, fever, stc.
I mean if somebody is being treated with an IBD, and if along the way, he/she cath up with any of the above. How should they approach that particular conition. Shall he/she go to any ordinary doctor and have regular medicines prescribed by that doctor ? Or he/she should first go to there GE surgeons and then visit a GP or an ordinary doctor ?
Again, we cannot answer this as none of us are from your country. There may be some members on this forum who are, but I think it's unlikely that anyone from your country will see your thread and answer you anytime soon. Ring your doctors' secretaries, ring your local hospital or doctors surgery and ask them who you should be consulting with. If your hospital or your doctor have web pages, you may be able to find this information from there.
 
You've already been told in several posts on this thread that the only way you'll know whether or not you are in remission is by a doctor carrying out tests on you. No one of this forum can tell you whether or not you are in remission.



Again, we cannot answer this as none of us are from your country. There may be some members on this forum who are, but I think it's unlikely that anyone from your country will see your thread and answer you anytime soon. Ring your doctors' secretaries, ring your local hospital or doctors surgery and ask them who you should be consulting with. If your hospital or your doctor have web pages, you may be able to find this information from there.
Sorry, if I have bothered you or disgusted folks here. But i am really upset with so many confusions, I hope it was not so confusing.
Anyways, my appologies!
Thanks for the reminder!
Cheers!
 
Sorry, if I have bothered you or disgusted folks here. But i am really upset with so many confusions, I hope it was not so confusing.
Anyways, my appologies!
Thanks for the reminder!
Cheers!
You don't need to apologise, and you haven't posted anything too disgusting. But you are asking questions we simply can't answer, and that's not going to change no matter how many times you ask. ;) I understand that medical systems can be confusing. But hopefully if you ring your doctor's office or ring your hospital, explain to them what you're confused about -for example, which doctor you should see and how to get an appointment - there should be a receptionist or switchboard where they can put you through to someone who can answer your questions.

Do you have a phone number for the doctor you saw previously? If so, I'd start there. Otherwise try ringing your hospital and asking there how you should go about getting appointments. If you can do this, I think your questions will be answered much sooner than if you ask people on this forum.
 
Since I am loosing muscles (mostly on lower body). Will it be possible to gain them back, by doing some gym. Will it be ok, if I take protein supplements, being a crohn's patient, I am afraid, if it'll be ok if I take the protein supplement in milk and do some rigourous exercise ? Will the protein supplement damage my intestines ? Please suggest something!

Thanks in advance!
 

valleysangel92

Moderator
Staff member
Malabsorption is common in ileal crohns as the damage affects the body's ability to digest food and absorb the nutrients. The extent of this depends on the severity of the damage and where in the ileum the crohns is located.
 
I have observed bad-belly (may be relapse) whenever I masturbate..
Do masturbation has any relation to crohns desease. Can masturbation be a trigger to crohns or diarrhea or constipation or acidity.
Please treat this question sincerely (no jokes please!)
Also, can masturbation be one of the reasons for inflammation of crohns desease ? I mean can masturbation introduce crohns deasease in an individual.
I am of Asian origin..specifiaclly an Indian.
I await your sincere answers..all of you are welcome!!
Thanks in advance!!
 

nogutsnoglory

Moderator
Masturbating tenses the abdominal muscles and could be why it is aggravating your condition and causing pain. I don't think there is any danger, further correlation. As for its impact on bowel movements, again when muscles are tensing up or relaxing this can make anyone crohns or not feel different than usual. I would not worry about it
 
Hello NoGutsNoGlory,
Thanks...your reply did help me to get over this not so good feeling.
Next, I am diagnosed with mild inflammation of ileal crohns. I can see myself..I have become very thin and I have lost muscles on lower part of the body as compared to upper body. I also, know, I am bound to loose muscle in ileal crohns (mostly lower body).
I, again, also all, the members here have more or less same knowledege as me and none of them are doctors..still I want to check with all of them...
Is there any way where I can recover the lost muscles ? Can I try protien supplements..
Also, how to maintain the muscles, those have remained with me to this date ?
Please reply!
Thanks in advance!
 
Hi Crohno.

There is no easy answer to your questions. You have got some kind of disorder (each of us experiences Crohn's differently) and in your case you are losing muscle weight which is alarming. I think most of us lose weight in general when our Crohn's is active. You need to remember that being diagnosed with it does not mean you will be able to cure it. Any treatment that is available to us is meant to keep us alive and reasonably well, but because no one knows for sure what causes Crohn's you cannot be free of it. There are various theories out there, but they keep changing and, as far as I am aware, currently doctors believe it is your own body that turns against your bowels and causes inflammation or ulcerations. What if that's not true?

It is noteworthy that your kidneys help to retain protein in your body which may leak out if they deteriorate or fail. You may also experience nausea and vomiting. That would certainly lead to malnutrition.

Weight loss is common with a lot of conditions and my advice is to rule out everything else before you put a 'Crohn's' label on it and if masturbation caused it pretty much everyone would have it by now.

Your problem may be also related to the amino acids which help to synthesise proteins.

Take care.
 
Hey Ari..
It so nice of you! Thanks for a detailed reply. I think discussing about your anatomic ailments with people who too know that, is a relieving thing for a sufferer like me. Its a very known fact, once you are flagged with "Crohn's", its almost stay "ON" as long as you are alive. But My main quest is to at least minimize (If cannot eliminate) the side effects.
In my case, I need to minimize my weight loss and keep at least an average muscle mass..that makes you feel good for yourself, and that too makes you presentable to others in social outings (mostly in office). Its very annoying to see that a pair of levi's purchased a year ago wont fit on your hips because you have lost muscles there and your hip has thinned down. Same goes true with that Arrow shirts and allen solly formals...Everything counts towards your professional (an to a certain extent) appeal/admiration..and aboce all your self respect (NOT ego) and confidence!!.
So is my frustration..
Anyways I have plans to put myself on synthetic protien diet (mostly TwinLab's whey) and 30 minutes cardiac and 45 minutes muscle training thrice a week!!
Also, need to check if my body condition still favors crohn's or it can be anything else also.
Please feel free to comment bro! I guess you are a nice human being...
You too take care!

Regards,
Crohno
 
Hi....I am also from India....I have some symptoms similar to u....except losing fat......I am currently undiagnosed and have symptoms from august 2010 . I am a student. what is your age??. Do you also have pain on left or right side.
 
Hello Abhishek,
I am from Mumbai. By god's grace, I do not have any kind of pain. I have very mild symptoms and at the most TWO motions a day. I pass semi-solid stools. I mostly hav gases. Sometimes I feel bloated post meal. I sometimes get mouth ulcers with dryness of mouth, too.
My main problem is I have lost my muscles completely. And my waistline, too has completely thinn'ed. I want to grow my muscles..I want them back.
btw. I am 32 years old, married and I weigh 63 Kg.

Please get back to me should you have more queries!
Cheers!
 
Hello All,

I did undergo the colonoscopy and endoscopy this month and I was confirmed to have crohns disease of ileum and duodenum.
It means I have inflamed ileum and duodenum.

My symptoms are weight loss and fatigue, I do not have belly cramps or diarrhea.
I consume Azathioprine(1 pill a day), Budesonide (3 pills a day) and Folic acid (2 pills a day).
I also take vsl3 (good bacteria capsule, ONE per day)

Still I have fatigue and weight loss.
I have started taking medicines since a week.
Is my my fatigue caused by the medicines I am taking now ?
How long it might take for symptoms (weight loss and fatigue) to improve.

I only weigh 59 Kg, I am 33 years old. I am Indian by origin.
Please answer, if you come across this post.

Thanks in advance..
Cheers!
 
It can take 3 to 4 months for azathioprine to reach therapeutic levels. The budesnide should work quicker.

Azathioprine can cause fatigue initially as can active disease.

You could look into maybe supplemental enteral nutrition(formula based liquids) to ensure you a meeting calorie intake.

Also, you could run vitamin panels to ensure you have no deficiencies. Vitamin D, B, zinc, magnesium etc.
 
Hey Clash,
Thanks a lot for your sprint reply mate!

I failed to mention that I have lost 5% of my total body within 3 months.
Also, my doctor has diagnosed me as Vitamin B12 deficient consequently I did follow 15 vitamin injections (FOLVITE), but still it could not save my weight loss.

I went through colonoscopy in Sept 2013, where my GI suspected the crohn's as per the biopsy report but he did not conclude it.

Then I weighed 68 Kg, since then I have been continuosly loosing weight.
When I weighed in June 2015 I weighed 63 Kg and now I weigh just 59 Kg.

Also, I have been passing sticky stools (not diarrhea) since 2008, but I was not diagnosed of crohn's then, even then I did not weigh more than 70 Kg.

I weighed 70 Kg in 2011, it was the highest weight I had ever put on.

By the god's grace I have never felt belly cramps (I wish I stay away from it in future, too), neither I pass blood in stool. Also, I visit rest room only ONCE on an average.

My nature of work is stressful and also I indulge in small fights with my wife frequently.

My details:-
Age = 33 years
Marital status = Married
Weight = 59 Kg
Height = 172 cm

Thus, my main concern is to get rid of fatigue and weight loss. I must weigh at least 66 Kg and free of fatigue.

I hope you might answer well now.
God bless you pal and I wish you stay in remission for years to come!

-Amen
 

Lady Organic

Moderator
Staff member
Hi,
a few weeks of feeling fatigued or nauseous would be normal on starting Aza. It shall resume after. In my case Aza starts working in 6 weeks. Budesonide shall help you in the meantime.
if you can find some strategies to minimize the stress in your professional and marital life that would a great thing. stress never helps a medical condition. wishing you well.
 
Thank you lady organic...

In addition to this, I'd like to mention I had fatigue + low grade fever for 3 months. No GP could fix that for me, that's why I went to a GI and he performed all those scopies and diagnosed me with crohns in duodenum and ileum.

I feel low grade fever even today along with fatigue.

You mean, this low grade fever and fatigue both may improve towards the end of the course of medicines ?

Also, do Azathioprine cause lever/pancrea damage ?

God bless..
Cheers!
 
What changes should you expect after you stop taking Azathioprine and budesonide ?
I was advised to take these TWO tablets for a month. I have stopped takin them since two days.
I am feeling sleepy, dizzy and feverish. Are these the common symptoms you face once you stop taking these TWO tablets.

Please share your answers!

Thanks!
chrohno
 

Lady Organic

Moderator
Staff member
Hi. It is very unlikely your GI advised to stop AZA. Please double check and call your clinic ASAP. AZA is a long term treatment that is usually taken for years. Budesonide is different and is a short term treatment. usually doctor will want to see you when budesonide treatment is finished (so you should have an appointment very soon?) to investigate if you relapse without it. The doctor hopes the AZA medication thereafter is enough to keep you well in remission in the long run.
Dr also usually start with the smallest possible therapeutic dose of AZA and keep room to increase it if symptoms start again. I have been there. In my case, initial dose showed great improvement but I relapsed a few months after. Then doctor increased to maximal dose and then I was well in remission for several years.
 
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