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08-23-2015, 05:40 AM   #1
Needananswer
 
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In need of advice....

Ok so my 5 month (probably much longer tbh) acute period of flare has continued to yield no definite diagnosis. Not that this should be something I'm unhappy about. However I still continue to emit symptons that are not only consistent with CD's they are unsettling for me as I still don't know what's going on. Have been tested for TB, HIV (which was never a doubt) Cancer and nothing untoward. I keep pushing for IBS but Doctors have flatly refused to diagnose because of the following;

5 perineal abscesses, 3 fistulas (2 still with drainage setons) 7 hospital visits, tissue necrosis, abdominal pain, fatigue, general malaise, joint and muscle ache, referred inflammation, change of BM (but no Bristol Scale 7's but plenty of 5 & 6 with increased volume) abnormal biopsies (but no granulomas, just abnormal crypts), bleeding from rectum, loss of appetite and overall weight loss. 10-15kg in 6 weeks without trying. (I'm a 183cm 38 year old male who is normally around 85kg.)

Last visit to surgery on Friday still show no signs of inflammation via a Sigmoidoscopy. I have had another biopsy (or two) and now await further results.

In my mind I have a few things going for me:

Age (too old to be diagnosed with CD - although when I think about things in the past I do worry and connect previous 'issues'.
No diarrhoea
No Granulomas (yet)
No family history of IBD

With the above, am I in the clear and is this something else? Anyone have any experience, idea or general knowledge to share?

I'm desperate to find an answer and move on. This is so frustrating. Not to mention painful when I eat, but touch wood I'm feeling pretty good right now.

Thanks.
__________________
7 Perianal Abscessess April 9th 2015
4 Resulting Fistula's
1 Necrotizing Tissue Infection

2 Setons in place

Medications:

Flagyl since September 2015
Imuran since January 2016
08-23-2015, 07:53 AM   #2
DJW
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Hi,
I'm sorry you're going through this; sounds awful.

My thoughts:

With all the abscesses and fistulas...I agree with the doctor, not IBS. IBS is the "we can't find evidence of anything wrong...IBS.

Crohn's can take time to confirm. (Not that I'm saying or suggesting you have Crohn's. I'm not a doctor)

Crohn's doesn't necessarily come with diarrhea.

You're not too old to be diagnosed. We have a diagnosed over 50 group.

No family history with IBD, unfortunately, doesn't mean you're in the clear with Crohn's.

Sorry, with I had better answers for you.
I'd suggest getting a second opinion.

Keep pushing.
Sending you my support.
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Dave
08-23-2015, 11:14 AM   #3
Tuff
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Those things don't put you in the clear. Have you had blood work done?
http://www.webmd.com/ibd-crohns-dise...ease-diagnosis
Lab tests: Blood protein levels, Blood sedimentation rates, Body mineral levels, Red blood cell counts, Stool samples to check for blood or infectious microbes and White blood cell counts.
What medications are you currently on?
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-23-2015, 01:01 PM   #4
fuzzy butterfly
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Hi, welcome, ye pretty much what djw said, keep pushing it is your right to be treated and be as well as you can be, so mither until you get a result .. i think it may well be crohn's, going of what you say, best wishes and i hope you a diagnosis soon ....
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
Mandy
08-23-2015, 03:45 PM   #5
Lady Organic
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I suggest you look into the abscesses and fistulas subgroup of the forum. Perianal fistulas and abscesses can be first manifestation of crohns disease. Muscle and joint pain is pretty common in IBD.
Did you have upper GI track investigation (small bowel or full colonoscopy to check the terminal ileum? seems like you need further investigation. as said before, there is no age for crohns or UC and no familial history necessary. Im the only one with CD in my family. Had never heard that name in my entire life before being diagnosed.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
08-23-2015, 05:20 PM   #6
Needananswer
 
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Hi,
I'm sorry you're going through this; sounds awful.

My thoughts:

With all the abscesses and fistulas...I agree with the doctor, not IBS. IBS is the "we can't find evidence of anything wrong...IBS.

Crohn's can take time to confirm. (Not that I'm saying or suggesting you have Crohn's. I'm not a doctor)

Crohn's doesn't necessarily come with diarrhea.

You're not too old to be diagnosed. We have a diagnosed over 50 group.

No family history with IBD, unfortunately, doesn't mean you're in the clear with Crohn's.

Sorry, with I had better answers for you.
I'd suggest getting a second opinion.

Keep pushing.
Sending you my support.
Thanks DJW. It appears to be a terrible little beast to nail down! . I suppose I'm clutching at straws. I have a follow up with my CRS in 2 weeks time to see the results from the last set of biopsies taken Friday.
08-23-2015, 05:24 PM   #7
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I suggest you look into the abscesses and fistulas subgroup of the forum. Perianal fistulas and abscesses can be first manifestation of crohns disease. Muscle and joint pain is pretty common in IBD.
Did you have upper GI track investigation (small bowel or full colonoscopy to check the terminal ileum? seems like you need further investigation. as said before, there is no age for crohns or UC and no familial history necessary. Im the only one with CD in my family. Had never heard that name in my entire life before being diagnosed.
Hi- I've had a colonoscopy as well and it showed no signs of inflammation. I had one small benign polyp which was removed. My CRS (who has been treating my Fistulas and Perianel Abscesses) and GP are now going to push me down the GI Specialist route to undertake small bowel investigation. My pain is particularly bad around my belly button that radiates right through to my back.
08-23-2015, 05:30 PM   #8
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So after my first weekend for what feels like ages (since April this year) I had a relatively 'normal' weekend. Are what I wanted (although still much smaller portions) even enjoyed a few alcoholic beverages!! Woo-hoo!!! And today (Monday here down under) I feel remarkably well. What is going on? Has this all been a dream or has it gone away? Is that what a remission feels like? I'm so totally confused.

On the question posted earlier on what medication am I on, the 2 most prominent drugs have been Flagyl and Erythmancin for th 2 bacterial strains I have floating around my body. Must say when ideas on Metronidazole I felt great in terms of appetite. And local pin relief for the tissue debridement and Fistulas.

If I think hard enough about positive things can I make this all go away!?
08-24-2015, 01:39 AM   #9
fuzzy butterfly
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So after my first weekend for what feels like ages (since April this year) I had a relatively 'normal' weekend. Are what I wanted (although still much smaller portions) even enjoyed a few alcoholic beverages!! Woo-hoo!!! And today (Monday here down under) I feel remarkably well. What is going on? Has this all been a dream or has it gone away? Is that what a remission feels like? I'm so totally confused.

On the question posted earlier on what medication am I on, the 2 most prominent drugs have been Flagyl and Erythmancin for th 2 bacterial strains I have floating around my body. Must say when ideas on Metronidazole I felt great in terms of appetite. And local pin relief for the tissue debridement and Fistulas.


If I think hard enough about positive things can I make this all go away!?
hi maybe the rest has done you good, just to say if it's possible try and get a ct scan or mri scan, thats how my crohn's was found all other tests were inconclusive till then. Yes remission is pretty much like that , no pain, being able to eat well and have the odd drink too . i still feel weary but thats a small problem compared to the rest... hope you keep well and good luck at your appointment, best wishes ..
08-25-2015, 01:53 AM   #10
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So if this is a slight remission then great. Although I have to say, I am still getting the odd abdominal pain/twitch (wouldn't call it cramping) and a feeling of nausea along with mainly hip/groin aches. Very dull and bothersome. Still waiting for my biopsy results as well. As an aside my 2 fistulas since surgery have stopped leaking pus and feel relatively fine. It's such a weird place to be this up and down place can't help.

Had a pelvic MRI a while back to map my fistulas. Nothing conclusive there as well. So it seems that at the moment my solid 'pointers' are Abscesses, Fistulas, Necrosis and Crypt distortion on my colon biopsy. Wondering how much more they need? Another affirmative biopsy? Visual inflammation? Granulomas? Oh it's so difficult. The last area untouched by investigation is Upper GI. My CRS has advised I now see a GI specialist and undertake a PillCam and Endoscopy. Has anyone had one of these and would a Small Bowel Crohn's manifest as Perianal Abscesses/Fistulas?
08-25-2015, 02:17 AM   #11
fuzzy butterfly
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Hi mine is in the small bowel, but fortunately no abscesses/fistulas, but from what iv seen it is likely that it could.sorry this is not more helpful. I'm sure some one who has had the same will be in touch soon. Best wishes..
08-25-2015, 03:28 AM   #12
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Thanks Mandyk - what are/were your main symptoms for SB CD?
08-25-2015, 03:47 AM   #13
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If you don't mind me asking?
08-25-2015, 08:31 AM   #14
fuzzy butterfly
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No probs, started with mild loose poos, then became more frequent more watery, then cramps started mildly then gradually getting stronger, with nausea starting, then being sick quite often.all of the above just getting worse all the time, my pains were mainly lower to mid abdomen...hope this helps...
08-25-2015, 08:24 PM   #15
joyful
 
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So after my first weekend for what feels like ages (since April this year) I had a relatively 'normal' weekend. Are what I wanted (although still much smaller portions) even enjoyed a few alcoholic beverages!! Woo-hoo!!! And today (Monday here down under) I feel remarkably well. What is going on? Has this all been a dream or has it gone away? Is that what a remission feels like? I'm so totally confused.

On the question posted earlier on what medication am I on, the 2 most prominent drugs have been Flagyl and Erythmancin for th 2 bacterial strains I have floating around my body. Must say when ideas on Metronidazole I felt great in terms of appetite. And local pin relief for the tissue debridement and Fistulas.

If I think hard enough about positive things can I make this all go away!?
I DO think that if you imagine and believe in serenity within... it truly does help!! It sounds very much like Crohn's to me... the randomness of symptoms reminds me of my experience. Life has been interesting, for 25 years mostly great... largely due to consciousness shift. BEST wishes to youi!
08-25-2015, 11:05 PM   #16
The Real MC
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CD doesn't strike just the young. I developed it when I was 42 years old, and there's no history of it in my family.
08-25-2015, 11:42 PM   #17
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Sorry to hear that you were diagnosed at such an age. For how long though did you suspect something was 'up'?
08-26-2015, 07:27 PM   #18
joyful
 
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I was too young to know what was "normal"... not aware of how long other people spent in the bathroom, for instance, or that it wasn't normal to feel discomfort after some meals. My parents tried to get me diagnosed for about three years before Children's hospital, Boston figured it out.
08-26-2015, 07:34 PM   #19
joyful
 
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CD doesn't strike just the young. I developed it when I was 42 years old, and there's no history of it in my family.
There is no history before me... (that I know of!) in my family.... but my daughter... perhaps inheriting my stress as well as my genetics? has it.... Do you think there is a common denominator among people who get Crohn's of personality or "type" ? Like... extra caring... ? Empahtetic? Perfectionist( in a good way)? or wanting to resolve all conflict and then feeling bad because we didn't turn out to be superheroes? I wonder a lot about the emotional connections with IBS CD and other auto-immune dis-ease.
08-26-2015, 09:06 PM   #20
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Do you think there is a common denominator among people who get Crohn's of personality or "type" ? Like... extra caring... ? Empahtetic? Perfectionist( in a good way)? or wanting to resolve all conflict and then feeling bad because we didn't turn out to be superheroes? I wonder a lot about the emotional connections with IBS CD and other auto-immune dis-ease.
I personally know 3 people with UC /indeterminate colitis, including myself, we are exctly how you describe, perfectionnist, very empathetic/sensitive and anxious. I've also though this play a part in triggering those bad genes.
when we are stressed, immune fonctions slow down. mild everyday chronic stress/anxiety definately is a part of the problem imo.
08-26-2015, 09:35 PM   #21
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I had a very stressful period between October 2012 and October 2014 where nothing was running quite right for me. It really was quite bad. I am normally quite a stoic person (although I do vent and get angry at things and people - it's usually superficial rather than bubbling deep down tbh) but this event got right into me. I then found release valves and found a new job (it's amazing how these things impact your home life - plus we had just moved from the UK so the added pressure was immense - this all gave me new hope) I then felt relaxed and"free" again. Then December 2014 ( 3 months into my new relaxed state I began to sense inner troubles and then from April 9th this year (as my other posts will show) it has been awful health wise......is this linked? Did my inner self resist all issues while "fighting" my chronic and highly stress period but then be vulnerable the minute I relaxed which has then allowed all my symptons to arrive like a juggernaught?
08-27-2015, 01:58 PM   #22
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I'm not sure which way it could affect people really, but I would say mine was worse the more stressed I was. Since having a bowel resection I have been fine and such much more chilled now I'm not in pain any more, and so far no symptoms 18/19mths after OP but It could well work the other way round for some... Best wishes
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