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01-16-2015, 03:26 PM   #1
smt
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A sufferer from India (Kolkata)

Dear members,

Let me introduce myself briefly. I am a full-time Ph D candidate in a reputed institute of management in india, and had been diagnosed with IBS after a stay at a remote Indian village. Before describing my symptoms, let me add that I have not been officially diagnosed of CD.

I have had loose bowel movements generally, which started 4 years back, after that rural stay. The bowels in most cases were not well formed, but not completely liquid. I went generally once or twice a day.

I took a leave for a year, and returned to my institute in December 2012. The physician, an MD prescribed me Normaxin, an anti-cholinergic, similar to Librax, and after taking that 2* daily, my stools were hard, and once every 3 or 4 days. I cut it down to once per day in December 2013, and that is the dose I use now.

In June last year my mother passed away, and I went home in Kolkata, and visited a gastroenterologist. I underwent blood tests and USG. ESR was 06, and Hb 13.7. USG was normal.

3 months back, I started suffering from balance issues and trembling and fatigue. I was found to be deficient in Vitamin b12 (139 pmol/l) I was prescribed 500 mcg of vit B12 per day as capsules. After taking them, my stools became mushy, and once everyday or once every 2 days. That is the frequency even now, after stopping those medicines. I am facing high pressure at work now.

A physician has, on hearing my symptoms suspected UC and has prescribed Mesacol. However, I have not stared it yet. I am scheduled to go home to Kolkata after about 2 weeks for a check-up. Till about 3 months back, I did not have blood in stool. Honestly, I am too scared to check it now. I suffer from gas, and am bloated on many occasions. Due to the contingent circumstances, I am a forced vegetarian, and perforce eat spicy and oily food. In October end, my Hb was 12.8 and ESR 06. Haematocrit, platelets, RBC, WBC were normal. Also, the local physician has this week said that I have normal haemoglobin on clinical examination (below the eye).

My question to honorable members here is: What does it seem to be? Also, what sort of examinations should I push for when I am in Kolkata, hopefully, after 2 weeks?

I would like to hear constructive suggestions/opinions, from people all over the world. This Ph D means much to me; if necessary I would be able to make change in food quality and habits.

Regards
A sufferer
01-16-2015, 07:37 PM   #2
Justanothercp
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Have you had colonoscopy?
01-16-2015, 09:13 PM   #3
SarahBear
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Welcome to the forum!

Have you ever noticed any blood in your stool, or have you been refraining from checking for it? Please don't be afraid - if there is any, just let your doctor know and I'm sure it will be dealt with.

I'm also curious if you've had any testing done other than blood work. If not, a colonoscopy would be an appropriate next step.

You may not necessarily have to change your diet, but it could definitely help you. Everyone reacts to foods differently - some people with IBD are very sensitive to what they eat while others are not. It can help to keep a food journal, in which you detail what you eat and your symptoms so that you can more easily make connects between them.

In your situation, I would be certain to ask what testing is to be done to determine a diagnosis. You may also want to ask your doctor for any suggestions as to what might help reduce your symptoms.

I hope things go well for you!
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01-16-2015, 10:16 PM   #4
David
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Greetings and welcome to the community.

That all this started after a visit to that rural area makes me first wonder about intestinal tuberculosis.

I agree with the others that a colonoscopy may be warranted.

The low B12 makes me think Crohn's is a distinct possibility though.

Are they able to perform a fecal calprotectin test there?
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01-17-2015, 02:05 AM   #5
smt
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Dear All,

Thanks for the responses.

Tuberculosis has been ruled out through a TB PCR and low ESR count. This started 4 years back; w/o TB medication, I would have probably died by now.

B12 deficiency has been attributed to a vegetarian diet. Many people are B12 deficient here.

Colonoscopy would probably be ordered when I visit Kolkata soon.

Calprotectin test: I would try to find out.

Till October, there was no blood. I used a flashlight. Now, I would check. As I said, an USG had been done. Normal.

The work pressure is difficult to manage. If I have IBD, I do not know what I would do. I expect your guidance. I desperately want to complete the Ph d and earn a little money. There is no social care here, and my family is extremely unsupportive, and that is an understatement. It is an open question as to what would get me first: the stricture, the hunger or the humiliation.

Updation: I visited the local GP (this is not Kolkata, but a small town) and he said he did not know the fecal calprotectin test. Medical care here is quite basic.

Regards

Last edited by smt; 01-17-2015 at 06:44 AM.
01-17-2015, 08:13 AM   #6
scottsma
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Hello and welcome, we have a forum member who gives his address as Kolkata too.I hope he will see your post and be of help to you. Best wishes.
01-20-2015, 05:33 PM   #7
David
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Best of luck to you smt. Please keep us updated when you find more.
01-20-2015, 07:19 PM   #8
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Paging sid from Kolkata, India.
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01-21-2015, 03:16 PM   #9
sid
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`hi smt,

I too am from kolkata. I have crohns since 2010 but it was diagnosed much later. I read your story and I feel sad for you since I too am pursuing my MBA from a management institute in kolkata and I understand how difficult it is to carry on your studies with IBD or IBS.

I dont what place your are right now where colonoscopy is not available, but thats the first thing you must get done upon reaching kolkata or any city around you where you find this facility and if any sign of IBD detected then a biopsy as well. there are a list of A grade hospitals as well as private clinics in kolkata where you can get it done.

the symptoms dont really give a clear picture, gas and bloatedness is common in CD but it could be just as simple as gastritis. a proper diagnosis is required here. I for example suffer from gas and fatigue and thats pretty much all the symptoms I have. Local herbs and syurvedic medicines helps my case a lot.

Food free of caffein, milk and milk product and gluten helps me immensely, filtering out these may help reduce the gas and bloatedness.
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And a large joint mad family, thus stress cant touch me.
01-21-2015, 04:40 PM   #10
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Hello Sid,

Thanks for the mail. Truly, it is difficult with the IBS/IBD but I have delivered in the coursework; I was within the top 5%ile of the batch in this highly ranked institute. But it is a fact that people do not understand you, and in so far as help from the family is concerned, I am helpless - my mother is no more and my father does not care much. Sibling, the less said about him the better.

I am scheduled to visit Kolkata in early February, and would see a gastroenterologist, a professor. When my mother passed away last year, he advised blood tests: ESR 06, Hb 13.7, all other parameters normal. While investigating the B12 deficiency, in October, the tests were repeated: ESR was 06 again, the Hb was a little less at 12.8. An USG was conducted in July and it was normal. Based upon these results, colonoscopy was not deemed to be absolutely necessary in August.

How are you now? If it is IBD, can I hope for a remission? Would it be possible to travel abroad with this condition? Currently, with the anticholinetgic Normaxin once or twice per day, I go to the toilet once every day or once every 2 days. Initial part is formed and the later part is mushy with a lot of mucus.

Food here is VERY oily and spicy, and I take toast (gluten). I perforce take milk with tea. I suffer from heavy mental stress.

I am depressed as I would really like to complete this Ph D and then travel; anything short I would consider to be a failure.

I have talked about colostomy with a physician or two, and they have called that a remote possibility.

Please do write in with your considered opinion.

Regards
01-22-2015, 01:30 PM   #11
sid
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Hello Sid,

Thanks for the mail. Truly, it is difficult with the IBS/IBD but I have delivered in the coursework; I was within the top 5%ile of the batch in this highly ranked institute. But it is a fact that people do not understand you, and in so far as help from the family is concerned, I am helpless - my mother is no more and my father does not care much. Sibling, the less said about him the better.

I am scheduled to visit Kolkata in early February, and would see a gastroenterologist, a professor. When my mother passed away last year, he advised blood tests: ESR 06, Hb 13.7, all other parameters normal. While investigating the B12 deficiency, in October, the tests were repeated: ESR was 06 again, the Hb was a little less at 12.8. An USG was conducted in July and it was normal. Based upon these results, colonoscopy was not deemed to be absolutely necessary in August.

How are you now? If it is IBD, can I hope for a remission? Would it be possible to travel abroad with this condition? Currently, with the anticholinetgic Normaxin once or twice per day, I go to the toilet once every day or once every 2 days. Initial part is formed and the later part is mushy with a lot of mucus.

Food here is VERY oily and spicy, and I take toast (gluten). I perforce take milk with tea. I suffer from heavy mental stress.

I am depressed as I would really like to complete this Ph D and then travel; anything short I would consider to be a failure.

I have talked about colostomy with a physician or two, and they have called that a remote possibility.

Please do write in with your considered opinion.

Regards
to be very honest yours and even my case are very mild compare to what many other CD patients go through. your blood work seem not bad and the other reports are good too and I just hope that your colonoscopy comes clear and there is no CD or UC.About your question on remission, yes, there is every possibility to achieve remission, personally I feel the term remission is subjective. what is remission for others may be a bad condition for me or vice versa since in CD, patients still experience the side effects of crohns. But you will definitely get better with proper care. sometimes medcines work for many and they achieve remission, for some changes in food does the work and many find exercise helpful.

Please dont lose hope, I am 100% sure you will be able to complete this PhD successfully and if you can manage your condition well, then there is no harm in travelling abroad. and very importantly do not be stressed. this forum has a lot of information about food and diet for CD patients, if you follow them, am sure you will definitely know what to eat and what to avoid... i helped me a lot.
01-22-2015, 01:46 PM   #12
smt
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Thank you Sid.

You say that your and mine disease are mild; do you say this on the basis of the number of times we need to go to the toilet? My frequency is 1 or 0.5 per day.

Most physicians are dismissing it as IBS going by the blood count. My weight is fairly constant. Your opinions?

Last edited by smt; 01-22-2015 at 02:23 PM.
01-22-2015, 01:48 PM   #13
smt
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The opinion of many is that in IBD, without real drugs, one needs to go to the toilet many times a day. With Normaxin once per day, my frequency is 1 or 0.5 per day. Also, my food is very bad: spicy and oily.
01-23-2015, 04:19 AM   #14
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I request anyone on the forum to answer my questions; after all we are all sufferers. Also, the inhuman treatment that I have got from my parents (one of them is no more) and sibling is bothering me a lot. Emotionally I am drained, and suicide is a consideration.

Regards
01-23-2015, 09:18 AM   #15
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smt
I have moderate to severe crohns but only go to bathroom 1-2 times/day. I think it largely depends on the type of crohns. Mine is "stricturing" more than "inflammatory". I take Remicade, Lialda, budesonide, omeprazole, and a number of supplements. I have had one resection.
I think we all get to the point of despair at some time, but I believe the right treatment can get you out of that, even if it means surgery.
Personally, I found the Paleo diet to really help with my day to day symptoms.
Good luck to you.
01-23-2015, 09:28 AM   #16
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smt
I have moderate to severe crohns but only go to bathroom 1-2 times/day. I think it largely depends on the type of crohns. Mine is "stricturing" more than "inflammatory". I take Remicade, Lialda, budesonide, omeprazole, and a number of supplements. I have had one resection.
I think we all get to the point of despair at some time, but I believe the right treatment can get you out of that, even if it means surgery.
Personally, I found the Paleo diet to really help with my day to day symptoms.
Good luck to you.
Thanks. I am as yet undiagnosed; please go through my reports (blood and USG above). All I want is to continue my research in management. And hopefully, go to the UK/Europe as a teacher/researcher. I should be able to work, that is all I want even if for the next 5 years.

Regards
01-23-2015, 10:11 AM   #17
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Since there are many illnesses of the GI tract then a colonoscopy would be the standard for diagnosis.

Blood work can be widely varied by those suffering from CD so not a good decisive tool. A USG can sometimes pick up abscesses but is also not great at detecting inflammation that may be present.

IBD is so highly individual that symptoms can vary greatly from one person to the next. It would be a good idea to keep a journal of your symptoms and bowel habits so you can relay them to the specialist at that appointment.

Once you are able to get more testing and a diagnosis then treatment can begin and remission could be quick. Many of those with CD have a full life with career, family, travel, finding the right treatment can make all the difference.

I hope the upcoming trip proves productive in finding a specialist that can run the appropriate tests and find the root of your symptoms.
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01-23-2015, 05:20 PM   #18
smt
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Since there are many illnesses of the GI tract then a colonoscopy would be the standard for diagnosis.

Blood work can be widely varied by those suffering from CD so not a good decisive tool. A USG can sometimes pick up abscesses but is also not great at detecting inflammation that may be present.

IBD is so highly individual that symptoms can vary greatly from one person to the next. It would be a good idea to keep a journal of your symptoms and bowel habits so you can relay them to the specialist at that appointment.

Once you are able to get more testing and a diagnosis then treatment can begin and remission could be quick. Many of those with CD have a full life with career, family, travel, finding the right treatment can make all the difference.

I hope the upcoming trip proves productive in finding a specialist that can run the appropriate tests and find the root of your symptoms.
Thanks for answering. Don't you think that blood inflammatory markers and hemoglobin would have showed up the inflammation if it was present? The GI physician told me that he would have ordered a colonoscopy had these been off; however, that was not the case.
Also, what is your opinion of the fecal calprotectin test?

Regards
01-23-2015, 05:51 PM   #19
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Inflammatory markers can be a good indicator for a lot of those with IBD but not all. My son's blood work(inflammatory markers like CRP) is normal regardless of the level of active disease going on. So even when he is in a flare his blood work is normal. For this reason we use the fecal calprotectin stool test since it detects inflammation in the GI tract only and is a good tool for him.
01-24-2015, 10:21 AM   #20
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Inflammatory markers can be a good indicator for a lot of those with IBD but not all. My son's blood work(inflammatory markers like CRP) is normal regardless of the level of active disease going on. So even when he is in a flare his blood work is normal. For this reason we use the fecal calprotectin stool test since it detects inflammation in the GI tract only and is a good tool for him.
Thank you for the reply. I am scheduled to go to Kolkata in 8 days' time, and would undergo the tests. I only hope that I would be able to come back and resume my work with my colon intact. I am scheduled to finish my doctoral coursework in the next 6 days, and I am preparing my prospectus. I am under pressure. Also, the food is very oily and spicy, and I perforce eat small portions. The food at home is much better in Kolkata. The local physician did not know about the FC test; I hope that they would know in Kolkata.

I wish your son the very best.

Regards
01-24-2015, 10:36 AM   #21
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Of the tests, still the colonoscopy, endoscopy and some type of imaging like CT scan or MRE will be probably the most useful.

A fecal calprotectin stool test is a great tool for determining if their is inflammation in the GI tract but it can't decipher what the inflammation is or where in the GI tract it is. So definitely a much better tool for after the official dx.

Some docs do use it as your doc used the inflammatory blood markers meaning to determine if further testing is warranted.
01-24-2015, 10:45 AM   #22
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Hi,
to get a colonoscopy is the smartest thing to do. I had a normal bloodwork and calprotectin, but despite it they have found ulcers in my TI. Symptoms - on and off gastritis without proof on gastroscopy, lack of appetite, constant mushy stool, pain where a gallbladder is situated and lately back pain. B12 insufficiency can be because you are a vegetarian. Beware that I am still not officially diagnosed (due to normal FC and lack of D), but Pentasa did a big difference for me.
01-24-2015, 11:28 AM   #23
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Hi,
to get a colonoscopy is the smartest thing to do. I had a normal bloodwork and calprotectin, but despite it they have found ulcers in my TI. Symptoms - on and off gastritis without proof on gastroscopy, lack of appetite, constant mushy stool, pain where a gallbladder is situated and lately back pain. B12 insufficiency can be because you are a vegetarian. Beware that I am still not officially diagnosed (due to normal FC and lack of D), but Pentasa did a big difference for me.
I would ask my physician in Kolkata to give me a colonoscopy. I very occasionally have felt pain in my right abdomen, but no back pain. You say bloodwork was normal: can I know your ESR, HB, WBC, CRP and haematocrit values?

The food here (today I had biryani, a type of Indian food, oily and spicy) does not help. I would get my own apartment and cook if they diagnose me and I am good enough to continue. The authorities would, hopefully, cooperate.

Regards
01-24-2015, 12:08 PM   #24
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SED 6 (4-24), WBC 8 (3,4-9,7), CRP 1,54, HB 138 (119-157), haematocrit 0,405 (0,356-0,47), calprotectin < 30 (<50). I have had an ultrasound and MRI. Colonoscopy was the last thing they did. And they have found a couple of small ulcers in my terminal ileum.
01-24-2015, 12:17 PM   #25
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SED 6 (4-24), WBC 8 (3,4-9,7), CRP 1,54, HB 138 (119-157), haematocrit 0,405 (0,356-0,47), calprotectin < 30 (<50). I have had an ultrasound and MRI. Colonoscopy was the last thing they did. And they have found a couple of small ulcers in my terminal ileum.
My reports were nearly the same: Sed 6 both times, WBC 6.2, CRP not done, HB 13.7 and 12.8 (normal by local standards), HCT 40. 6%.

Do you think MRI can help? I am a little wary of the colonoscopy.

I believe local GI physicians need to look at their skills and see if they can improve.

Regards
01-24-2015, 12:48 PM   #26
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MRI is a quite expensive thing to do, and trust me, if there is something to show up on MRI, you would feel it much worse than just an occasional RQ pain. Mine did not show a thing. Colonoscopy is nothing to worry about. Mine took around 15 minutes, I was a bit sedated and did not feel a thing. But if you are so afraid of it, maybe it would be the best to make a calprotectin test first. It is said to be a really sensitive inflammatory marker (not in my case though).
01-24-2015, 01:20 PM   #27
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MRI is a quite expensive thing to do, and trust me, if there is something to show up on MRI, you would feel it much worse than just an occasional RQ pain. Mine did not show a thing. Colonoscopy is nothing to worry about. Mine took around 15 minutes, I was a bit sedated and did not feel a thing. But if you are so afraid of it, maybe it would be the best to make a calprotectin test first. It is said to be a really sensitive inflammatory marker (not in my case though).
Thanks. My institute has become access compliant and my doctoral coursework would hopefully be completed in 6 days; I would like to continue the Ph D very much taking advantage of the access compliance. I would go for colonoscopy - I have read that there is a danger of injury to it. Is this true?

I do not get any help from family (my father or sibling or anyone). Since here there is no social security, I would have to die if i cannot work.

Regards
01-24-2015, 08:44 PM   #28
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Try some fermented foods, bone broths, stewed, easily digestible meats off the bone. Keep it simple and highly nutritious.
01-27-2015, 09:51 AM   #29
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Anyone, please answer this: what are the signs of intestinal obstruction? Is the pain that I feel for a minute or so very occasionally a sign (on the upper right quadrant; occasionally below the left rib cage)? Occasionally, I am nauseated; the physician says this is a symptom of IBS.

Regards
02-16-2015, 08:54 AM   #30
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Thanks all. I have visited the GI specialist and the neurologist. I asked the former for a fecal calprotectin test and a CT scan. Unfortunately he was not willing and said that I can do a colonoscopy. Before doing this he also asked me to go to a neurologist and get bloods (B12, D3 CBC etc done) as per his advice. I have visited the neurologist as well. Now is the moment of truth. i would like to have your advice regarding colonoscopy. I understand it is a fairly safe but painful process. The other question is he has not written biopsy on the script. An individual told me that if something is not apparent they would not do it. Can you advice?

I am very wary of all this. My future plans, even livelihood is at stake. I would lose my identity, my work and eventually my bread if I continue to live with any illness. There is no social care in this country. I am thinking of the humiliation. I understand all of you are in this position. With great respects to all fighting this illness, if I get to hear any word of advice including if anyone has successfully fought this off I would be very grateful.

Regards
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