I feel dejected

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LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/19/2008 10:17 AM (GMT -7)   
I had another consultation today. I am in remission. However I get the odd bout of Diarrhoea but get no bleeding and no other symptoms. I suffer from IBS too you see.
 
The GI "thinks it is UC as it's on the right hand side too" but he isn't sure. Says it could be "Infective Colitis" as none of the biopsies are are clear on IBD.
 
He says he wants to do another Colonoscopy in October to find out what has happened in a year for a better assessment. In the meantime he said he wants me to stay on meds and not take a risk but I am allowed to take my dosage down if I want.
 
Is he being over cautious? Is he doing it for the money? Do I have UC even though IBD hasn't been diagnosed and GI says I am healthy according to my blood work and biopsies?
 
I feel like I am in the dark.


Diagnosis in October 2007: Non Specific Colitis (Mild inflammation on Rectum, Plus some patchy inflammation on Right and Left side of Colon). Symptoms started after a bout of anti-biotics.                                 

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October - after 4 days of meds. Stool colour often light in colour but well formed and urine often dark or yellow.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/19/2008 10:49 AM (GMT -7)   
I think your doc doing another c-scope is in proper order.

Diarrhea can be from a few different things...IBS included as well as food. If it's not consistent...I wouldn't worry too much.

Being on the meds you're on is a good safely measure to keep inflammation at bay.

Where exactly on the right side do you have the inflammation...around the cecum as well?

Did you have stool samples done? did they show anything?

Non-specific anything is always difficult to live with.....the waiting game is one of two things:
1) wait until it goes away
2) wait until it gets worse

You'll just have to hang tough until your next c-scope to hopefully have more answers.

You really don't have to be on meds if you really don't want to ..... but if you get worse, your emotional state will be one of which I would advise you not go.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/19/2008 10:51 AM (GMT -7)   
quincy said...
I think your doc doing another c-scope is in proper order.

Diarrhea can be from a few different things...IBS included as well as food. If it's not consistent...I wouldn't worry too much.

Being on the meds you're on is a good safely measure to keep inflammation at bay.

Where exactly on the right side do you have the inflammation...around the cecum as well?

Did you have stool samples done? did they show anything?

Non-specific anything is always difficult to live with.....the waiting game is one of two things:
1) wait until it goes away
2) wait until it gets worse

You'll just have to hang tough until your next c-scope to hopefully have more answers.

You really don't have to be on meds if you really don't want to ..... but if you get worse, your emotional state will be one of which I would advise you not go.

quincy

 
It hasn't reached the cecum no. MY diarrhea is not consistent, in fact it is rare.
 
Stool samples show nothing, and niether do blood or biopsie.
 
It might even be the hemms!!
 
It sucks but it's some on here are much worse so I am sorry for bothering people.

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/19/2008 11:01 AM (GMT -7)   
I don't think you have UC...but the 5ASA meds are still the best for helping keep inflammation at bay...

The hemmies won't give you diarrhea.

I think bothering people would be possible if it inconvenienced them. We all have choices whether to read or answer threads/postings.

It would totally suck if we all felt crappy at the same time.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/19/2008 11:04 AM (GMT -7)   
quincy said...
I don't think you have UC...but the 5ASA meds are still the best for helping keep inflammation at bay...

The hemmies won't give you diarrhea.

I think bothering people would be possible if it inconvenienced them. We all have choices whether to read or answer threads/postings.

It would totally suck if we all felt crappy at the same time.

q

The GI says he only suspects UC as the inflammation was in two places. He has confirmed I don't have Chrohns. However, he says it could be infective colitis and always writes down colitis with a small "c" on all diagnosis.
 
I have always had soft but well formed stools, don't know why - probably IBS.
 
Thanks for being there for me on many forums Quincy since day 1.

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/19/2008 11:28 AM (GMT -7)   
You're welcome...I know how it feels to be worried about stuff when there aren't any definitive answers. The only thing I've realised is that worrying creates more distress and can sometimes change the outcome by creating more problems.
 
Did the doc do stool samples?..if yes, what were the results?

Did you ask your doc why he wants you on the meds?

I can see if they didn't help you...but they are...and he's certainly not one to go to any extremes (from what I remember from the start)...so I say be patient and arm yourself with information to formulate questions that will get you the answers you need.

Hope you have a good weekend.
The weather here is glorious...not too hot.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/19/2008 11:40 AM (GMT -7)   
quincy said...
You're welcome...I know how it feels to be worried about stuff when there aren't any definitive answers. The only thing I've realised is that worrying creates more distress and can sometimes change the outcome by creating more problems.
 
Did the doc do stool samples?..if yes, what were the results?

Did you ask your doc why he wants you on the meds?

I can see if they didn't help you...but they are...and he's certainly not one to go to any extremes (from what I remember from the start)...so I say be patient and arm yourself with information to formulate questions that will get you the answers you need.

Hope you have a good weekend.
The weather here is glorious...not too hot.

quincy

Stool samples came back normal.
He wants me to stay on meds as a precaution.

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/19/2008 9:03 PM (GMT -7)   
I can't see that it would be infectious colitis if you showed nothing in your stool samples...although not all infections are checked for. If it's suspected, then to me, it would be wise to keep checking.

Have you been biopsied for microscopic colitis (MC)?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/20/2008 3:36 AM (GMT -7)   
And that's the mystery.... there doesn't seem to be an answer. I guess we will know more from the scope in Autumn.

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/20/2008 5:12 AM (GMT -7)   
So again, if it isn't Colitis what is it? Imagine if after all this, it was Hemmorhoids? Imagine if the inflammation was inactive and I have been through this for no reason?

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/20/2008 9:33 AM (GMT -7)   
Hemorrhoids don't give you inflammation elsewhere in your colon, so it's two different issues.

IBS doesn't cause inflammation.

You've not been through anything that wasn't caused by some symptoms....so it's been with merit. You can't just "make up" inflammation if it isn't there.

Remember that there are different levels of inflammation and with biopsies, it will show changes within the cellular structure.

Try not to throw up your hands in defeat...you can't change the past....look forward to your next appointment and be prepared. DO make sure you've been checked for all the pertinent tests...and make sure that the doctor will take biopsies to clarify unanswered queries.

If the 5ASA is helping to keep inflammation down....that's a huge thing. Small price to pay from my perspective.

Hang tough...

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/20/2008 1:17 PM (GMT -7)   
Thanks Quincy, I e-mailed my GI with my concernes and this is what he wrote back.... Any clues as to what it might be? His answers are in bold...
 
I sort of rushed out without clarifying everything that I wanted, can you answer the following questions please? ...
 
1. Are you now sure I have UC? Is that now the diagnosis? Surely an infective colitis would have shown in my stool sample?
 
No we presume you had mild colitis which could have been UC. Infective colitis does not always show up on stool culture .
 
2. What shall I do about my dosage now I have been in remission 6 months?
 
Continue with 800mg three times a day
 
3. What did you say about my piles? Did you treat them when you did my Colonoscopy? I didn't understand what you were saying about them.
 
No the piles were in remission and did not need injection.
 
4. You mentioned a lining starting to show in my anus, what is that?
 
There is no concern. I mentioned there to be slight extra lining ie mucosal redundancy. This has no clinical significance but may mean that the piles have a small chance of producing symptom like bleeding or itching.
 
5. What shall I do about my often soft stools? Is that to do with what I eat or just IBS? I took an Imodium today for the first time in
months.
 
You do not need to worry at all. The stools appeared normal
 
6. Lastly, you said I should be vigilant, what shall I be looking for?
 
Any change in your bowel patern especially regular diarrhoea lasting more than a week or blood in your stools or any other symtom which you feel is unusual.
 
I can reassure you that there is no evidence of any active problem at present.
 
Best wishes

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30090
   Posted 4/21/2008 1:06 AM (GMT -7)   
Wow....how awesome is it you can email your doctor???? EXTREMELY!!!


I would take it to mean that you're in a good state at this time and not to worry as he says. I agree that if you have any changes that are consistent..as in worse.....you should alert the doc to that.

I think biopsies could tell if you had infectious colitis.

You don't have a clear diagnosis.

Regarding the mucosal redundancy..I've not really heard of it, can't really find too much on it actually. I would have thought it to have meant scarring but maybe it means the area is slightly inflamed or "bigger" than normal. I'm only guessing. The doc isn't concerned it seems.
Maybe there's a hemorrhoid soon to be showing...?

Why did you need imodium? were you going more often?

Maybe you could consider to take a fibre supplement?

Still cool you can email your doc!

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/21/2008 2:47 AM (GMT -7)   

Hi Quincy

I took an Imodium as  was getting some diarrhoea due to the anxiety around visiting the doctor (I have IBS) but it is nothing major and it more soft stools than it is diarrhoea. The lining mucosa thing is around a haemorrhoid forming which might bleed so I have to be careful on.

I have one of the Top 10 GI's in the UK according to Tatler Magazine (do a search under Tatler Doctors) - they do a "best doctors in the UK" list. I have private medical here through my company in addition to National Health so I chose the best one. His name is Dr Chopada.... he is brilliant and works out of the best hospital in London -The Cromwell.... it is amazing that someone of that reputation allows you to email him on a Sunday night and also responds within an hour. I also have his mobile and am able to call him anytime. It is service at it's best.

He doesn't take any chances and is very very thorough,I trust him. I guess he is fed up with my anxiety but manages me well.

I just want to get better like everybody else but the reports look good, God willing.


Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2201
   Posted 4/21/2008 7:22 AM (GMT -7)   
Some of us never get 100 percent set in stone answers. My diagnosis has waffled between UC and Crohn's a couple of times and is still not definitely UC. And I supposedly still have IBS, too. I also have symptoms of intolerance to gluten and dairy, but celiac tests and ELISA allergy tests showed nothing. I've found I had to stop obsessing about putting a label on my condition and focus instead on generally improving my digestion and healing the entire GI tract.

There's alot of great information out there that will help you improve digestion and lessen symptoms, no matter what the underlying cause or official diagnosis. I'd highly recommend you check out Listen to Your Gut or Listen to Your IBS by Jini Patel Thompson, Optimal Digestion by various GI authorities and The New Eating Right for a Bad Gut by James Scala.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 4/21/2008 3:55 PM (GMT -7)   
I know hun... I guess we are all fortunate as there are people with far worse conditions and may God help them. It's just frustrating.

Diagnosis in October 2007: Non Specific Colitis (possible UC but not confirmed) (Mild inflammation on Rectum, Plus some patchy inflammation on Right side of Colon).

Medication Prescribed: 800mg Mesalazine (Asacol) 3 times a day  

Symptoms: One or sometimes two BM's a day often linked to anxiety and stress (IBS). In remission since October.

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