Share Facebook
Crohn's Disease Forum » Support Forum » Undiagnosed Club » Possible Crohns/IBD , not diagnosed [Need Advice]


01-05-2016, 02:30 PM   #1
shankar
 
Join Date: Dec 2015

My Support Groups:
Possible Crohns/IBD , not diagnosed [Need Advice]

Here is a bit of my story and who i am..

[This post may contain lots of unneccesary information, scroll down to reports and questions if you dont wanna read a long post ]

I am now a 26 yr old guy who is on holidays in india..

I went to canada when i was 23 yrs old for studies.. Until then back in india, I eat a lotta street food, and pretty much hygiene is out of question.. I visited hospital about 5 times max in my 23 years.. Well, its because i grown up in such a place, where there are very few doctors, and no one ever heard of the term specialists..

I do smoke, drink and eat pretty much eat any dish(pork, beef whatever)..

Ever since i moved to canada, after 6 months i started to have dry mouth , which i still have..(maybe because its cold..)
After about 1 year into canada, I started to develop depression due to personal issues, then in about a month or two, I started to have constipation issues..

At this moment, i started to seek medical help for constipation.. all blood tests and xray done .. everything came back normal.. and told me to eat a lotta fiber..

Drinking prune juice really helped me a lot.. But constipation still clinged to me for about a year.. And depression gets increased/decreased... Now i still have it, but its in control..

Along with this, my diet became poor, technically not a balanced diet and sedentary lifestyle..

Then i came to india for holiday around November 2014 .. Depression skyrocketed, but i refused to seek any professional help due to factors like money, and social background..

Around March 2015, I went to see gastroenterologist (A specialist,First time in my life) because i thought there could be a blockage(maybe anxiety..). And told everything thats happened, She told me to do an ultrasound.. Well, i did it was normal..All blood tests and stool tests were normal.

She prescribed some gastroesophagal reflux medication for about a month..But i took it like a week, then i started to have a bit of soft stools (inbetween hard and watery).. I am quite happy, and i have to get to toilet only once a day.. I stopped taking that medication, and i had soft stools everyday, rarely its solid (Never normal like long and round)..

I had one problem after that, Whenever i goto the toilet, I had rapid emptying of my stools.. Like in less than a minute, bang!, everything gone down.. And also , its like i have to be in toilet atleast in 10 or 15 mins after i feel the urge(Never ever did in pants in my life)..

I didnt go and see a doctor, because i am quite worried the medication could reverse this rapid emptying effect and get back into constipation phase(i was quite tired after having consipation for about an year)..

Around May 2015, I developed a tailbone inflammation, Went to orthopadeist, did xray and everything normal, ate 20 days medicine, nothing happened.. Then the doctor told me not to sit in hard surfaces, I still have a mild tailbone even now(very mild, almost gone i think).. So its irrelevant i guess(so did the gastroenterologist)..

November 2015, i started to feel some skin sticking out of my anus and it pains when i tried to touch it or pains when i sit.the area around my anus gets wet . Then i googled and ended up with rectal prolapse(which i dont have).. Once i push it in, it didnt bothered anymore.. For about a week, i thought its rectal prolapse and could go off on its own.

I went to Gastroenterologist in the first week for it, She examined and said its anal fistula. I never heard of it before.. So she told me to do an MRI, and proceed further..

Here is the MRI Report:
Sequences: coronal, STIR, T1 FSE, T2 TSE, Axial STIR, T2 FSE, T2 FS SAGITTAL STIR, T2 FSE
  • There is a thin linear track seen in right gluteal 7 'O' Clock region, extending across internal/external sphincter, to open at 6 'O' Clock position
  • Pelvic floor muscles appear normal
  • Ischio-rectal and ischio-anal fossa appear normal
  • Rectum / Perirectal spaces are normal
  • Gluteal muscles and subcutaneous planes are normal

Impression:
Simple linear right Trans sphicnteric fistula with internal opening at 6 'O' clock level - Grade I .

The Gastroenterologist, seen this and said that i have to do surgery to remove fistula and i dont have any abscess, But before that colonosposy is needed..First she gave antibiotics for ten days to see if it stops the pus coming out through my fistula..

THe antiobiotics might have reduced a pus a bit, but it comes out, and then its time for my colonoscopy..As usually read lots of horror stories about colonoscopy alone..

This is the day i stopped smoking..Never smoked after that day until now.

But my colon prep was very normal, I ate breakfast at 9 am.. started drinking peglec powder at 11 am, no bowel movember till 12 30 pm.. Then i forced myself on toilet and a bit comes out.. I got worried as my solution 2 litre solution is almost over.. Then comes that urge, and i went like 4 times full of watery.. Then i believed it got clean.. My colonoscopy was scheduled at 5 pm..Doctor advised to drink 2 more litres of any liquid /water.. I drank 4 more.. Its like i drank 6 litres in 4 hours.. Around 3 pm my head started to pain badly.. Dont know why, maybe because i havent ate anything (i doubt it..maybe i drank more water..) .Before going to hospital , i had another watery bowel movement. Went to hospital at 5 pm and my headache just keeps on increasing.. And then it got delayed to 7 pm.. My head was paining quite bad and i got a lot anxious.. I tried drinking water, it aint helping..

I told the doctor, that my head is paining, she said it might be because i didnt eat anything.. Then i was lying on the bed, and a tube goes into me.. And the doctor keeps pumping air. and i cant pass any air/gas outside, and starting to feel pain inside me (the scope was in my ileum which i didnt knew or feel) .. then passed a huge gas and the doctor informs me that i have ulcer like stuff all over the colon and terminal ileum.. She examines the terminal ileum, and there was a bit of pain.. I starts to panic, anxious and pain(like its unbearable and i have to move) .. doctor told me to stay steady as she gonna take a biopsy.. I started sweating worse in a air conditioned room, and my dress got really wet.. And i puked the water which i just drank with a bit of mucus in it.. my headache got really painful at this point as i trying to puke, but nothing inside mybody other than water... Then slowly i starts to calm down.. And a biopsy of ileum was painless.. Then she moved the scope out of ileum.. then i was so relaxed, Then a colon biopsy was taken.. Its painless as well.. And i was told to get off the table after a few minutes.. My headache just going bad.. then i puked again.. again.. Just a bit of water though.. lied down for like 10 mins, with my hands pressing my head..Everyone giving me water, which i didnt want.. Then i rushed out of hospital, there aint any taxi/auto outside(my home is ten mins walk from hospital).. As my mom takes care of billing and stuff (72 US$ for colonoscopy on total) , i begin walking fast along the dark roads and reached home, then puked again on the door(nothing left in me, not even water to come out, just a few drops of saliva)..I went and curled onto the bed, and slept for an hour, the headache still was quite bad, then i somehow managed to eat a bit.. then the headache is gone.. And i slept quite well..

Here is my colonoscopy report:
PREPARATION: GOOD
SEDATION: NIL
PER RECTAL EXAM:EXTERNAL OPENING SEEN

SCOPE PASSED UPTO TERMINAL ILEUM
MULTIPLE APHTOUS ULCERS SEEN IN COLON
MORE DISTALLY, BIOPSY TAKEN

NODULAR MUCOSA IN TERMINAL ILEUM
BIOPSY TAKEN

FINAL DIAGNOSIS:
FISTULA IN ANO/ ? CROHNS DISEASE - BIOPSY TAKEN

IMAGES TAKEN IN COLONOSCOPY (insides of intestine) i.imgur.com/1oA74Tv.jpg

Then i have to drive for about one hour to deliver the biopsy sample next day..

Here is the report of my Biopsies:

HISPATHOLOGY TEST:

Terminal Ileal Biopsy: (Macroscopic and microscopic description)
Five mucosa covered soft tissue ranging in size 0.3 to 0.8 cms.
Sections show multiple fragments of ileal mucosa showing moderate increase in lamina propria cellularity due to infiltration by lymphocytes, plasma cells, scattered eosinophils and neutrophils.Hyperplastic lymphoid tissue is seen with very prominent germinal centres. No granulomas are identified.

Colonic Biopsy: (Macroscopic and microscopic description)
Five mucuosa soft tissue fragment each measuring 0.5cm.
Sections show multiple fragments of colonic mucosa showing mild to moderate increase in lamina propria cellularity due to infiltration by plasma cells, lymphocytes and scattered eosinophils.The crypt architecture is well maintained. There is no significant mucus depletion of the glands. There are pericryptal lymphoid infiltrates. No granulomas are identified.

IMPRESSION:

TERMINAL ILEAL BIOPSY SHOWING SUBACUTE TO CHRONIC MODERATE ILEITIS, NEGATIVE FOR GRANULOMAS, WITH REACTIVE LYMPHOID HYPERPLASIA.

COLONIC BIOPSY SHOWING MILD CHRONIC COLITIS , WITH NO SIGNIFICANT ACTIVITY, NEGATIVE FOR GRANULOMAS, WITH FOCAL PERICRYPTAL LYMPHOID INFILTRATES.

I went to visit my Gastroenterologist after this report, She said there is nothing specific to say that i have IBD, and she asked me to take a few blood tests ESR, CRP, ACSA, ANCA , Fecal calprotein..

Here are those levels:

ESR 1hr (WB/Capillary Photometry aggregation) - 17mm -----Reference level is <14 mm

C-Reactive Protein (Serum/Nephelometry) :LESS THAN 3.27----- Reference: < 5.0 mg/L

Fecal Cal Protectin, Stool: BELOW 10 -----Normal level : Below 50 mg/kg Test Method : ELISA

ANCA-MPO (pANCA), (Serum/IF) : NEGATIVE

ANCA-PR3 (cANCA), (Serum/IF) : NEGATIVE

Autoimmunity tests :
ASCA-IgA antibodies to Saccharomyces cereviceae** : NEGATIVE (1.9) ----- Reference : Negative: < 10 U/mL Positive: => 10 U/mL

During this blood test, on the last test tube(5th) , the nurse let go off the vein, and were trying to find it back, I was looking at that needle, and got anxious, and started sweating a lot and felt dizzy.

My Gastroenterologist seen this report, and said there is no indication of inflammation in my body, But suggests me to take mild doses of IBD medication and surgery for my anal Fistula..

My Questions now are

1. Why should i take IBD medication if doctor is not sure of what i have..
2. Side effects of IBD medication, my environment is not really clean, So any medication that affects immune system will have impact on me..
3. Should i try improving my diet and exercise instead of medication
4. should i try ayurveda/homeopathy due to the side effect issue..
5. Do i have IBD ? Maybe a mild version? (Doctors said no specific inflammatory disease)
6. Will i get worse? or get better? with medication or without?
7. If i start to take IBD medication, Will i have to take forever?
8. Should i get a second opinon from other specialist?
9. Will my fistula come back again after surgery?
10. If doctor is not sure whether i have IBD, does that increase my fistula reoccurence?
11. Will my fistula get cured on medicine alone?
12. Can the issue be something other than Gastro, and these are signs of some other disease?
13. If there is any specialist i should see other than Gastroenterologist, who should it be?
14. Havent drank in a month, is it okay if i drink?
15. I never had any flare/blood from intestine/abdominal pain.. Will i get them?
16. I heard crohns patients gets fistula, but fistula before crohns diagnosis , maybe some other reason for fistula?
17. Do IBD start as inactive(like my current state?) and suddenly becomes active? or it suddenly becomes active and medications to make them inactive?

Apart from gastro issues, (these may/may not be related)

Dry mouth (3 years)

I get headaches often if i spend a lotta time in a closed place (with less or no air circulation), when going out i feel much better..

Popping knuckles often (having it for six or more years)

Hard to drive at night (especially the headlights,I wear very thin glasses though, day time i can do without glasses.. having this for 10 years or so.).

Gets tired easily (for two years or so.)

sometimes dizzy/mild headache after eating oily foods. (lasts few mins )

Depression.

mild Pain under a right chest rib , which lasts 2 to 3 seconds, occur randomly .. happens like 2 times a year, for like 2-3 days.. (asked online doctors, said nothing to worry)

I have dry mucous every morning, sometimes nostril blockage when sleeping.

Finally, my bowel movements are kinda solid, just once a day (Never taken any medication till now )

Please share your thoughts..
01-05-2016, 03:12 PM   #2
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
Hi Shankar

Welcome to the forum. I am from India too and my husband is currently being treated in US for Crohn's. Are you in India now? Just wanted to say I hope you feel better.

Aarthi
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
01-05-2016, 11:57 PM   #3
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Why don't you try both changing diet and take medication? If it is not IBD, you can always come off the medication. I actually had a fistula or fissure before my diagnosis. I would follow doctor's advice. I am sorry. I know I didn't answer all your questions. I hope you get some definite answers. If I don't make sense, let me know.
01-06-2016, 02:35 AM   #4
shankar
 
Join Date: Dec 2015

My Support Groups:
Hi Shankar
Welcome to the forum. I am from India too and my husband is currently being treated in US for Crohn's. Are you in India now? Just wanted to say I hope you feel better.

Aarthi
Thank you ..Yes, I am in india.. Hoping to get my surgery and diagnosis done while im in india in the next two months because its a lot expensive in canada as i dont have any kinda insurance..

Why don't you try both changing diet and take medication? If it is not IBD, you can always come off the medication. I actually had a fistula or fissure before my diagnosis. I would follow doctor's advice. I am sorry. I know I didn't answer all your questions. I hope you get some definite answers. If I don't make sense, let me know.
IBD medicine might prevent my doctor in finding out what it was?(if it heals the ulcers temporarily).Also, IBD medications wont cure, it just treat that symptom.I am also worried IBD medication could lead to something else as the medicine alters immune system, i get cold very easily (environment is kinda dirty).Maybe if i leave it alone and symptoms increase, so that the doctor can be sure what it was. or maybe my ulcers could go off naturally?.. As you said you had fistula before diagnosis, did you take any medication/surgery for fistula before diagnosis? Did it reoccur? what type of fistula it was?

Also i kinda feel that my doctor pretty much dont know what to prescribe me, So she goes for IBD medication to treat those ulcers..Also, i have no idea how to know whether those medicine is treating me or not..

I am thinking of talking to another specialist.. and then maybe stay off medication until any further symptoms show up .. And do my surgery for fistula after a month if nothing happens to me..
01-06-2016, 02:55 AM   #5
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
You said you get cold very easily. I get cold easily. Besides Crohn's Disease, I have problems with my thyroid and it causes me to get cold easily. As to your question about taking medication/surgery before diagnosis. I was told I had both hemorrhoids and a fistula and needed surgery. My body had trouble healing from surgery and somehow the doctor determined that I had Crohn's and that was slowing down my healing. I have a history of fistulas but it doesn't have to happen with everyone . I don't know what type of fistula it was. Best to you.

01-06-2016, 03:12 AM   #6
shankar
 
Join Date: Dec 2015

My Support Groups:
You said you get cold very easily. I get cold easily. Besides Crohn's Disease, I have problems with my thyroid and it causes me to get cold easily. As to your question about taking medication/surgery before diagnosis. I was told I had both hemorrhoids and a fistula and needed surgery. My body had trouble healing from surgery and somehow the doctor determined that I had Crohn's and that was slowing down my healing. I have a history of fistulas but it doesn't have to happen with everyone . I don't know what type of fistula it was. Best to you.
As you said you have a history of fistulas.. Do you know what causes them? .. Maybe it could be side-effects of medication as your immune system is low and you develop infections internally quite easy?

Were you taking medication before and during surgery? Maybe those medication could be the reason for you having trouble healing? (assuming you didnt have trouble healing from injuries before medication? ) ... Have you ever thought about in this way??

I am kinda worried that i will also have trouble healing from surgery(infections/fistula) if i go on IBD medication..
01-06-2016, 03:16 AM   #7
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Are you worried that you could be doing worst damage to your boss to you by not taking the medicine?

01-06-2016, 03:17 AM   #8
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I wasn't taking any medicine until after the surgeries. You can always seek another opinion.

01-06-2016, 03:32 AM   #9
shankar
 
Join Date: Dec 2015

My Support Groups:
Are you worried that you could be doing worst damage to your boss to you by not taking the medicine?
Actually im not worried as i dont have any symptoms yet and the doctor even said that i could wait and see if symptoms gets worse.. I asked why do i have ulcers if there is no inflammation in blood tests.. She then prescribed some low dosage IBD medication...

I came across some stats of people in highter lattitude are more prone.. As i move back to canada, can my IBD get worse?(If i have it.) Lots of Maybe's and question marks with IBD..

I wasn't taking any medicine until after the surgeries. You can always seek another opinion.
Good to know.. I will get second opinion from other specialist and continue on medication if he/she says the same..
01-06-2016, 09:22 AM   #10
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Good. Keep us updated.

01-06-2016, 03:18 PM   #11
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
If you have Crohn's, fistula means the disease is severe. It is a complication of the disease. But there are cases of fistula in people who dont have Crohn's either.But I dont think your IBD will get worse if you go back to Canada. Once you get it, its there until treated, no matter where you are. I hope you get a diagnosis soon.
01-06-2016, 03:19 PM   #12
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
If you have Crohn's, fistula means the disease is severe. It is a complication of the disease. But there are cases of fistula in people who dont have Crohn's either.But I dont think your IBD will get worse if you go back to Canada. Once you get it, its there until treated, no matter where you are. I hope you get a diagnosis soon.
Me too

08-11-2016, 03:58 PM   #13
shankar
 
Join Date: Dec 2015

My Support Groups:
An update ..

No diagnosis.. so, never on any medication..

Had fistuloctomy on april 2nd, and fistula is removed..

Still having pus-discharge post fistulectomy.

No visible symptoms so far, never visited doctor after surgery.. Its been 5 months..

Moved back to canada after surgery..

I hope those ulcers in intestines goes off on its own.. and fistulas don't come back..

I haven't made any changes to diet or lifestyle.. I do eat pretty much everything , all kinds of meat , alcohol..

Will update if i make any doctor visit after this..
08-11-2016, 04:15 PM   #14
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
Suggest you slow down on the alcohol and your normal diet. Alcohol is crohn's enemy. I hope you get your diagnosis soon. Ulcers in intestines definitely sound like crohn's to me. I hope I'm wrong

08-11-2016, 05:06 PM   #15
shankar
 
Join Date: Dec 2015

My Support Groups:
Suggest you slow down on the alcohol and your normal diet. Alcohol is crohn's enemy. I hope you get your diagnosis soon. Ulcers in intestines definitely sound like crohn's to me. I hope I'm wrong
I wont get any diagnosis until i feel worse.. My doctor suggested that i might get crohns later, or there is a even a slight chance for those inflammation to go off on its own... So, i should just move on with life without thinking about these.. And thats the reason i wasnt on this forum for months . thought of making an update..
Reply

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Possible Crohns/IBD , not diagnosed [Need Advice]
Thread Tools


All times are GMT -5. The time now is 09:05 PM.
Copyright 2006-2017 Crohnsforum.com