Share Facebook
Crohn's Disease Forum » Your Story » DOnt know if its really crohns


 
11-05-2013, 12:04 AM   #1
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!!
11-05-2013, 12:15 AM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
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?
11-13-2013, 09:29 AM   #3
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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??
12-06-2013, 05:14 AM   #4
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!!
12-06-2013, 02:46 PM   #5
Nims22
 
Nims22's Avatar
 
Join Date: Nov 2013
Location: Staten Island, New York

My Support Groups:
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.
__________________
Current Meds: Pentasa 500mg 2 pills 2x a day, Lomotil and Zofran as needed and started 4.5mg LDN June 6, 2014!
12-06-2013, 02:48 PM   #6
Nims22
 
Nims22's Avatar
 
Join Date: Nov 2013
Location: Staten Island, New York

My Support Groups:
You also may want to ask about a small bowel series or endoscopy to check other areas for evidence of Crohn's.
01-03-2014, 08:59 AM   #7
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-03-2014, 10:37 AM   #8
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
01-03-2014, 11:17 AM   #9
Nims22
 
Nims22's Avatar
 
Join Date: Nov 2013
Location: Staten Island, New York

My Support Groups:
I would also get tested for celiac disease!
01-15-2014, 05:37 AM   #10
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-15-2014, 05:40 AM   #11
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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
01-15-2014, 05:18 PM   #12
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Yes Nicola is my name. I'm glad you found the information useful and I hope you get on the road to recovery soon .
01-16-2014, 02:04 AM   #13
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-16-2014, 05:22 AM   #14
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
01-16-2014, 06:17 AM   #15
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
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.
01-16-2014, 08:34 AM   #16
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-16-2014, 08:54 AM   #17
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-16-2014, 09:05 AM   #18
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
01-16-2014, 09:11 AM   #19
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
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.
01-16-2014, 09:21 AM   #20
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
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)?

Last edited by UnXmas; 01-17-2014 at 06:04 AM.
01-16-2014, 09:21 AM   #21
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
01-16-2014, 12:54 PM   #22
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-16-2014, 01:03 PM   #23
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!
01-16-2014, 01:13 PM   #24
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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 ?
01-16-2014, 01:29 PM   #25
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
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
01-16-2014, 01:37 PM   #26
valleysangel92
Moderator
 
valleysangel92's Avatar
 
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
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.
01-16-2014, 08:45 PM   #27
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!!
01-16-2014, 08:55 PM   #28
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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!!
01-16-2014, 10:32 PM   #29
Jennifer
Adminstrator
 
Jennifer's Avatar
Crohno have you had a stool test (occult blood stool test) done for blood since your stools are often black?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
01-17-2014, 12:36 AM   #30
Crohno
 
Crohno's Avatar
 
Join Date: Nov 2013
Location: Mumbai, India
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
Reply

Crohn's Disease Forum » Your Story » DOnt know if its really crohns
Thread Tools


All times are GMT -5. The time now is 07:29 PM.
Copyright 2006-2017 Crohnsforum.com