Do doctors have a clue about this disease?

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LondonRed
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Date Joined Oct 2007
Total Posts : 1190
   Posted 3/11/2009 8:08 AM (GMT -6)   
Dear all - I wish you all good health and its good to see so many familiar names on here.
 
Those of you that know me know that I have on here on and off with unclear symptoms and a new twist has just happened.... here is my story....
 
  • In June 2007 I had bright red bleeding without diarrhoea and went to see a GI who said it was non specific colitis but not IBD and left me without medication. (Sigmoidoscopy)
  • In October 2007 I went to see another GI and he said I had indeterminate patchy colitis as the biopsies were not conclusive of IBD. (Colonoscopy)
  • In June 2008 I had black stools from a duedonal ulcer which then triggered my colitis.  I was diagnosed with Chrohn's Colitis. (Colonoscopy, X-Ray, MRI with Barium, Gastroscopy)
  • In March 2009 I had black stools again from an Ulcer and H-Pylori infection. I just hope it doesn't set me off again but I think diet may be playing a big part in my symptoms.

This time though they did a capsule endoscopy which came back normal, and biopsies from my small bowel also show no inflammation. This was done at the leading St Marks Hospital in London which is the best in Europe for gastric disease.

My GI now thinks I might not have IBD after all and it is Colitis that is being made worse by Asacol. He wants to try me without meds and with VSL#3 which works amazingly for me by the way. I am scared to give up the drugs though as the problem I have is that I have an active patch of colitis on the right hand side of the bowel with the rest of the bowel in remisson - this was seen on the capsule endoscopy. I don't have bleeding from it as such and I don't get any symptoms from it. But surely leaving that patch alone will only make things worse and increase my risks of cancer in the long term?

The GI says that with IBD or Colitis it is best to treat symptoms and not get too bothered by a red patch in my colon as normal people often have some inflammation in the GI tract without medication... also does a lack of small bowel involvement make Chrohns "less likely" as the GI says?

Should I take his word for it? I am scared, and have been through a lot and many hospital stays with blood loss for the duedonal ulcers. My colitis or Chrohns isn't severre but enough for me to worry.


Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 3/11/2009 9:10 AM (GMT -6)   
Listening to all that you've gone through is frustrating me so I can only imagine the fear you must be experiencing yourself. Personally I'd find another doctor. Search around for the best GI you can find even if it means a long travel.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008
- Niferex-150 Forte 1 capsule 2x Daily


LondonRed
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Date Joined Oct 2007
Total Posts : 1190
   Posted 3/11/2009 9:20 AM (GMT -6)   
The GI I am using is in the Tatler top 10 in the whole of UK. The St Marks Hospital GI I just used is recognised as the best in London. So I don't think it is them as such, I just think that my diagnosis isn't clear.

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 3/11/2009 9:28 AM (GMT -6)   
The hospital I use is one of the best for gastroenterology in the state of Indiana, but I had a doctor who didn't know his ..you know what...from a hole in the ground from this very hospital. He dropped the ball with me and when I went to another doctor and he asked me who told me all my misinformation his jaw dropped and he mumbled as he left the room. I could hear him complaining to a nurse in the hallway about "another patient of Dr. X".

And you could very well be correct. Perhaps your condition is being very tricky. Your symptoms may not be fitting what they think may be the issue, but with a colonoscopy you'd think they have some idea of how to begin treatment. I hope they find the right one for you soon.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008
- Niferex-150 Forte 1 capsule 2x Daily


ErinD
Regular Member


Date Joined Jul 2008
Total Posts : 94
   Posted 3/11/2009 9:43 AM (GMT -6)   
LondonRed,
You sound EXACTLY like me...i am in the same boat as you, no true diagnosis but definitely some form of IBD. I went to 4 doctors trying to figure out what was wrong with me and finally my last doctor i went to is the best in the state and is well known for his clinical studies throughout the US. he ran every test possible (with same results as you) however treated me for an IBD with medications. He feels it is some 'sort' of IBD since I do respond to IBD drugs, however even though i dont' have true diagnosis he feels i should remain on them since they do help me (i get all the symptoms back when i am off of them). It seems like there are a few of us out there, maybe some day they will figure us out!
38 y/o married female, 1 child
First Diagnosed with Microscopic Colitis 10/07
Diagnosed with UC instead 3/2008
Diagnosed with Osteopenia 2/2009 (thanks Prednisone!!)
10mg Prednisone
75mg Imuran
Calcium + Vit D


dragoon5
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 3/11/2009 10:38 AM (GMT -6)   
Hey i read about your symptoms and problem and i can relate. I was being treated by a so called "expert" who turned out to be full of it. just remember that doctors like any other professional trade should always be verified. it NEVER hurts to have a second opinion and if the doctor is a true professional he will understand

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/11/2009 12:18 PM (GMT -6)   

I've been through multiple gastro docs, including my current who is practicing at the University of Arkansas Medical Sciences hospital, which is a highly respected teaching hospital. I've yet to find one that could really help me all that much or could intelligently discuss probiotics and other therapies. The success I've experienced managing my UC has come through my own research and trial and error. IMHO, it doesn't hurt to get a second opinion, no matter how highly esteemed your current GI may be.

My diagnosis has been in question, too... was it UC or Crohn's? I have atypical UC symptoms, but the Prometheus IBD test indicated UC, so who knows? Ultimately, I decided the things that I've found most helpful - probiotics, dietary manipulations, omega-3 supplementation, etc. - are the same regardless of the diagnosis, so I no longer care what tag is applied to me.

I disagree with your doctor's advice to treat the symptoms and assume some inflammation is acceptable. I feel inflammation is not normal and should be addressed, regardless of whether or not you have overt symptoms. There are supplements that can help reduce inflammation and encourage gut healing. Diet also plays a role in controlling inflammation.

I do agree with your doctor that Asacol could potentially be causing problems. Many people have issues with it and, ironically, some of the common complaints are the very things we're trying to improve, like diarrhea. If you don't feel good about stopping your meds, why not ask your doctor for an alternate ASA?


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 3/11/2009 12:32 PM (GMT -6)   
Isn't Colitis a form of IBD? Your doctor should know that...
 
I could be wrong
 
Maybe you have some kind of colitis that doesn't fit into the catagory of IBD?
 
I would get a second opinion.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


bulldozer
Regular Member


Date Joined Jul 2008
Total Posts : 37
   Posted 3/11/2009 12:41 PM (GMT -6)   
Hello everyone,
I was originally diagnosed in Oxford ( England ) by a top doctor in this field -- even now other doctor's practically worship at my feet because I saw him !! Anyway the years passed and I was free of UC symptoms for 14 years. I returned to England ( from Scotland ) and was referred to the nearest hospital for my annual checkup. The consultant there told me I was cured and to go home , throw away the Asacol ( I was taking 3/day as preventative ) In fact -- says he-- I had been cured for 9 of those years. Well -- YES -- you've guessed it !! Almost a year to the day since I took that advice I had a flare-up -- luckily I followed a strict regime of many years ago and got it under control after 3 months,
. During these months I attended another hospital and the consultant there was gobsmacked that I had been so ill -advised -- so now I am back on those 3 tablets/ day and doing very nicely thank you. Been in remission now since mid - September and never looked back !!
Are there many we can truly trust ? Now I shall have my checkups at my second choice hospital and trust my own intuition too. Take care all.

LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 3/11/2009 4:39 PM (GMT -6)   
Coitis doesn't mean its IBD, it could be many forms of it. I think I am going to try the VSL3 and Diet route and see if coming off Asacol does anything.

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 3/11/2009 10:32 PM (GMT -6)   
UC is IBD. Colitis? I don't understand what "colitis" is?

IBD is an autoimmune disease. When the immune response is fully understood, a plethora of diseases will disappear.
UC diagnosed in 1987.
 
 Was returned a life with Colectomy and J-pouch surgery 9/2001
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 3/12/2009 1:50 AM (GMT -6)   
I think my issue is I feel well, the biopsies come back inconclusive, the blood tests are always good, and I have no diarrhoea of other symptoms. Only blood with my formed stools. Obviously there is inflammation in my colon but does inflammation mean IBD? I am told there are hundreds of different types of colitis.

Diagnosis Oct 07 and then Aug 08: Inditerminate Colitis currently under some. Current Medication: 500mg Asacol Suppositories, 800mg Asacol Tablets x 2 a day.

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