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New Diagnosis - Ulcerative Colitis


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#1 CJ78

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Posted 13 April 2012 - 02:52 PM

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Hi There.

I'm new to this forum, but have been on the sister IBS group forum for many months.

I'll try and cut a long story short, so hopefully I won't bore anyone!

Around a year a go I started getting bad flutulence - both in frequency and in aroma.
Then about 9 months a go this turned to loose stools (Scale 7) with a frequency of 6-10 BM's per day. I had the urgency to push even after emptying my bowels, but no other symptoms.

Eventually I went to see my usual GP who said they were sure it was IBS, and gave me peppermint capsules.
After 2 weeks with no success I went back and was told to try immodium, but during this appointment my GP mentioned that there was plenty more to try before thinking about the 'Big C;.
Well that was it...it was all I could think about.

I went back to a different doctor after this after the immodium had no effect (8 capsules per day).
I went though stool tests, which all came back negative.
After getting these results, this GP then became a little bit blazay (sp?) and forgot to check my rectum as it this point with the D frequency, I was having fresh blood after most stool movements.
He kind of said "Yeah, looks ok but sore so probably just rips with the BM".
No further advice given but to try a little longer with the immodium.

After another week or so, I made an appointment again, but ended up with another GP.
This time, the GP was helpful and listened.
I came off the loperamide, and went on to mebeverine (anti-spasmodic). I also had full blood tests.
Two weeks in, and no difference with the mebeverine. Agreed for another 2 weeks, and by this point, my frequency had to 2-4 BM's per day.
My blood test results came back all negative for everything tested for.
I then introduced the immodium back in, and after spending 1 month experimenting with 1 in the morning and 1 in the evening, I had a review.
I expressed my anxiety again and that my consistency, recent advertising and the original comment (!) and asked how sure she was I had IBS-D.
I was told 95% because it was as sure as she could ever be with the tests available to her.
After consideration, she referred me to a gastroenterologist as if I had these thoughts about cancer, then it would never be resolved without taking the testing as far as possible.
About 5 weeks a go I had the gastroenterolgist appointment who after examination, reading my history and listening to my story and symptoms said he was 99% sure (at worst) it was IBS-D.
But again, and thankfully, he said the only way to be certain it wasnt cancer was to actually have a colonoscopy.

Well, today was my colonscopy.
After examination of my colon, and after having a negative results on inflammatory markers only a few months earlier, I was diagnosed with IBD - UD.
Some biopsies were taken just to make sure it was not crohns (no clear observation there was), but eventually, a firm diagnosis.

The relief was unbelieveable - I am only 33, have one daughter and my wife is expecting our second in September!
Such negative thoughts for so many months, emotional visions of the future - its really drained me.
I'm now looking forward to building up my strength and getting on with things.

Very strange though having IBD without any inflammatory markers - If I didnt have the anxiety that I did, which pushed for a colonscopy, then I would never have found out and would have been thinking I had IBS-D.
To be fair, even the discharge nurse was surprised with the results.

Still, time to move on and focus on controlling the UC.

A quick question also. Would anybody carry on taking the mebeverine (last taken yesterday lunch due to the klean-prep for the colonscopy) if I do not have IBS-D, even if it appeared to have some positive effect?
My GP appointment isnt for another 10 days, so will not be taking anything until then (stopped loperamide on sunday).

I will have a look around on the forum, but hope the above is of some interest to someone out there :)


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#2 Patman75

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Posted 20 April 2012 - 01:05 PM

Welcome to the Forum, I found out I had UC when I was 30 with my duaghter on the way so I know how you feel.

I know your being told one thing by your doctors.

However I have found that Dietary and Lifestyte changes have made a big impact in my quality of life. I'm on my lowest meds now, more energy, acne gone, eczema gone, stable weight, etc.

I highly recommend you look into SCD or GAPS. There are links in the IBD 101 forum.

Best of luck.

Pat
Diagnosed with UC November 2004, I felt aweful until I started seeing a Nutritionist (CCN or DACBN) in Febuary 2008.
Started with Candida diet + supplements.
Currently in remisson following SCD and GAPs diet. Antioxidants, Fish oil, multi vit, Colazal 3X2.

My Progress - http://www.ibdsuppor...-need-to-share/

IBD Resource Post - http://www.ibdsuppor...esource-thread/

#3 CJ78

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Posted 20 April 2012 - 04:12 PM

Hi Pat.

I'll certainly have a look.
I've only just started last night mesalamine last night, so going to give this a while first to see make sure it is working.
I have also recently come off mebeverine x3 per day and loperamide x2 per day, so trying to ensure these are out of my system.

Once I have settled I will look in to other aspects of my lifestyle.

I have been tested for cealiac, which came back negative.
I do not drink/eat much dairy, so hard to recognise any changes (although I had circa 500g of yoghurt over the last 24 hours (fat free though!) and I did have two BM's that I did need to go to the loo for).
But over the last 4 months I have been on a calorie reduced (so improved balanced diet) calorie diet. I have also introduced excercise (now swimming 3x1 mile per week), so quite happy at the moment.

But there are lots of angles to explore...I will also discuss these with my GP.
She is, to be fair, very good at listening to what I need and working with me.
I will also discuss with the hospital doctor when I have my biopsy results.

But I feel so much better knowing what I have, and looking forward to working on improving this for me.
I am also looking forward to the prospect of having normal BM's that I have only experienced only 3 or 4 times in the last 9 months!

I've realised though that if you have to go, you have to go.
At least I have a reason, I can't do anything about it, so just need to carry on.

#4 Patman75

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Posted 21 April 2012 - 10:20 AM

Most people with IBD have issues with Gluten, even if you are tested negative for cealiac you can still be gluten intolerant. Every alternative IBD diet plan (GAPS, SCD, Paleo, Candida, and some other doctors) say to get rid of Gluten.

Dairy can be vary. Milk is a difinate NO, unless it is raw which you may or maynot tolerate but just to be safe lets say NO MILK. Butter can be OK, no salt organic prefered. Store bought yogurt is not fermented long enough and has too much lactose in it. Avoid Store bought yogurt. 24 hour Homemade SCD or GAPS yougurt should be OK. Cheese can be tolerated but I would wait until your gut settles down.

I know you want to give the meds a chance but you might be waiting a while. I waited for 3+ years for the meds to do anything. 2 weeks after dietary changes I was having 1-2 solid BMs a day.
Diagnosed with UC November 2004, I felt aweful until I started seeing a Nutritionist (CCN or DACBN) in Febuary 2008.
Started with Candida diet + supplements.
Currently in remisson following SCD and GAPs diet. Antioxidants, Fish oil, multi vit, Colazal 3X2.

My Progress - http://www.ibdsuppor...-need-to-share/

IBD Resource Post - http://www.ibdsuppor...esource-thread/

#5 CJ78

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Posted 22 April 2012 - 02:44 AM

Thanks again Patman.

I guess I will only wait something like up to 1 month to see if the meds are making a difference.
But, I will be looking for an improvement than a cure.
I think they need to do this to make sure that my meds are working on the inflammation, otherwise they will need me to move to another one.

I would probably try dairy first to see if it makes a difference.
I have generally have a small amount of milk in 2-4 cups of tea/coffee per day. Occasional yoghurt is also in my diet (and cheese only occasional as well), and butter is very rare for me.
However, dairy is in some many products due to a fairly cheap carrier (e.g. snack seasonings).
But dairy would be my first call.

Second, and only because I love foods with gluten (Carbs are one of my sins in life), I would look at this.
A more difficult dietry change, but if it helps, then why not. I wouldn't be missing anything from a nutritional point of view.

I am one of those people who like to do thing one thing at a time, and guess I want to get the meds right first, access, then take the next step.
It infuriates my wife :lol:

How long would you take when cutting something out of your diet before seeing if it makes a difference?

#6 CJ78

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Posted 22 April 2012 - 06:52 AM

I am one of those people who like to do thing one thing at a time, and guess I want to get the meds right first, access, then take the next step.
It infuriates my wife :lol:


I'm also a man...can't do two things at once :unsure:

#7 Patman75

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Posted 22 April 2012 - 07:55 AM

Usually people with IBD will have multiple intolernaces while flaring. One other method is to go on an elimination type diet where you start off with very simple easy to digest food that allows you body to rest and heal up. Then slowly add thing back in and record (Food journal) if the new food has any unwanted issues.

Not to beat a dead horse but too many carbs is a big problem for IBDers, you body does not digest them very well and then they become food for all the microbes in your gut. Your micro flora in you gut is probably out of wack and that extra carbs/food for those buggers will just keep making you sick.

Check this out.
http://www.breakingt...e/beginners.htm

Best of luck
Diagnosed with UC November 2004, I felt aweful until I started seeing a Nutritionist (CCN or DACBN) in Febuary 2008.
Started with Candida diet + supplements.
Currently in remisson following SCD and GAPs diet. Antioxidants, Fish oil, multi vit, Colazal 3X2.

My Progress - http://www.ibdsuppor...-need-to-share/

IBD Resource Post - http://www.ibdsuppor...esource-thread/

#8 CJ78

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Posted 24 April 2012 - 07:53 AM

Thanks again Pat.
Makes me wonder whether I should go for a breath test for analysis of whether I have microbial overgrowth. I've been for H Pylori which I believe was negative.
Didn't realise the effect of carbs on IBD sufferers though. Will definately look in to this more as time goes on.
If I have to adjust my lifestyle, then so be it.
Have the GP this afternoon, so will have a chat with her then.

#9 Patman75

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Posted 24 April 2012 - 11:58 AM

Breath tests and stool analysis get help give you data to what microbes are living inside you. Hair Analysis is a good tool for figuring out if your dealing with Heavy Metals and chemicals.

Bacterial imblanace and heavy metats/chemicals can cause IBD issues.
Diagnosed with UC November 2004, I felt aweful until I started seeing a Nutritionist (CCN or DACBN) in Febuary 2008.
Started with Candida diet + supplements.
Currently in remisson following SCD and GAPs diet. Antioxidants, Fish oil, multi vit, Colazal 3X2.

My Progress - http://www.ibdsuppor...-need-to-share/

IBD Resource Post - http://www.ibdsuppor...esource-thread/

#10 CJ78

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Posted 13 May 2012 - 02:19 PM

How long would you wait for treatment to work on IBD/UC?

I am currently 3 or 4 weeks in to mesalamine, and have started to notice BM frequency reduction (still around 4/5 a day).
BM consistency though, whilst seems to have improved infrequently is still looseish (around 5/6).

Am I being impatient with this...I guess I just want to get to as normal as possible?

I also have a high proportion of fruit in my diet because of me, well, diet.
Trying to loose some weight, but per day I am quite frequently having the equivalent of 5-8 portions.
Is this going to make much of a difference?

#11 Patman75

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Posted 13 May 2012 - 06:42 PM

It is hard to tell how fast a treatment might help. It all depends on how severe the UC is and if your doing any other alternative supplements, healing programs and limiting yourself to toxins.

I have been able to knock out full bleeding flares in less than 2 weeks with just 3x3 colazol, stage 1 SCD , antioxidants, aloe vera juice, l-glutamin and reducing my exposure to toxins.

5-8 servings of fruit is a tad too much. People with IBD can have issues with too much frutose. 2-3 servings of fruit is plenty and replace with 5 serving of veggies. The veggies will help with weight too. ;)
Diagnosed with UC November 2004, I felt aweful until I started seeing a Nutritionist (CCN or DACBN) in Febuary 2008.
Started with Candida diet + supplements.
Currently in remisson following SCD and GAPs diet. Antioxidants, Fish oil, multi vit, Colazal 3X2.

My Progress - http://www.ibdsuppor...-need-to-share/

IBD Resource Post - http://www.ibdsuppor...esource-thread/

#12 CJ78

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Posted 18 May 2012 - 03:10 PM

Hi Pat.

Just the mesalamine at the moment.
Might try and cut out some of the fruit. I have increased frequency, but don't notice any consistent changes alongside the amount I eat.

I guess meeting the specialist again will help in creating an action plan.

#13 Tucker

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Posted 03 June 2012 - 01:23 PM

Hi There.

I'm new to this forum, but have been on the sister IBS group forum for many months.

I'll try and cut a long story short, so hopefully I won't bore anyone!

Around a year a go I started getting bad flutulence - both in frequency and in aroma.
Then about 9 months a go this turned to loose stools (Scale 7) with a frequency of 6-10 BM's per day. I had the urgency to push even after emptying my bowels, but no other symptoms.

Eventually I went to see my usual GP who said they were sure it was IBS, and gave me peppermint capsules.
After 2 weeks with no success I went back and was told to try immodium, but during this appointment my GP mentioned that there was plenty more to try before thinking about the 'Big C;.
Well that was it...it was all I could think about.

I went back to a different doctor after this after the immodium had no effect (8 capsules per day).
I went though stool tests, which all came back negative.
After getting these results, this GP then became a little bit blazay (sp?) and forgot to check my rectum as it this point with the D frequency, I was having fresh blood after most stool movements.
He kind of said "Yeah, looks ok but sore so probably just rips with the BM".
No further advice given but to try a little longer with the immodium.

After another week or so, I made an appointment again, but ended up with another GP.
This time, the GP was helpful and listened.
I came off the loperamide, and went on to mebeverine (anti-spasmodic). I also had full blood tests.
Two weeks in, and no difference with the mebeverine. Agreed for another 2 weeks, and by this point, my frequency had to 2-4 BM's per day.
My blood test results came back all negative for everything tested for.
I then introduced the immodium back in, and after spending 1 month experimenting with 1 in the morning and 1 in the evening, I had a review.
I expressed my anxiety again and that my consistency, recent advertising and the original comment (!) and asked how sure she was I had IBS-D.
I was told 95% because it was as sure as she could ever be with the tests available to her.
After consideration, she referred me to a gastroenterologist as if I had these thoughts about cancer, then it would never be resolved without taking the testing as far as possible.
About 5 weeks a go I had the gastroenterolgist appointment who after examination, reading my history and listening to my story and symptoms said he was 99% sure (at worst) it was IBS-D.
But again, and thankfully, he said the only way to be certain it wasnt cancer was to actually have a colonoscopy.

Well, today was my colonscopy.
After examination of my colon, and after having a negative results on inflammatory markers only a few months earlier, I was diagnosed with IBD - UD.
Some biopsies were taken just to make sure it was not crohns (no clear observation there was), but eventually, a firm diagnosis.

The relief was unbelieveable - I am only 33, have one daughter and my wife is expecting our second in September!
Such negative thoughts for so many months, emotional visions of the future - its really drained me.
I'm now looking forward to building up my strength and getting on with things.

Very strange though having IBD without any inflammatory markers - If I didnt have the anxiety that I did, which pushed for a colonscopy, then I would never have found out and would have been thinking I had IBS-D.
To be fair, even the discharge nurse was surprised with the results.

Still, time to move on and focus on controlling the UC.

A quick question also. Would anybody carry on taking the mebeverine (last taken yesterday lunch due to the klean-prep for the colonscopy) if I do not have IBS-D, even if it appeared to have some positive effect?
My GP appointment isnt for another 10 days, so will not be taking anything until then (stopped loperamide on sunday).

I will have a look around on the forum, but hope the above is of some interest to someone out there :)



#14 Tucker

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Posted 03 June 2012 - 01:26 PM

I had UC since 1977. I am in complete remission after undergoing fecal transplant therapy. See my post under the topic Fecal Transplant.

I am happy to answer any question you may have.

Tucker

#15 sweetone167

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Posted 17 June 2012 - 11:17 PM

It is a relief when u actually know what it is! When the ER dr told me I had colitis a couple weeks ago I thought my life was over and thought everything negative was starting to get very depressed and then after the gi dr did my scope and told me for sure it was UC I felt better... Now its just keeping it under control and looking foward to having normal poos!

#16 CJ78

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Posted 17 August 2012 - 03:53 PM

Well thought I would update my thread a little.

I have a couple/few other threads following being quite ill.

I can now confirm that my specialist GP diagnosed me with Asacol induced Pneumonitis.
I now seem to be over it, although at times my breathing whilst exercising still feels tight to a small degree. I think I will need to check to make sure there is no minor damage following this.

For the last number of weeks now, i've been off all medication.
Started off ok, but did has at points caused increased frequency. Typically only going to the loo 3-5 times a day.
Movement are a lot looser now, and more consistently so.

Still, nothing uncomfortable or inconvenient yet.

I have a follow up appointment on the 03rd of September to discuss medication and whether to try another 5-ASA drug.

I think though i've kind of worked out, as my condition is only mild to moderate, that I have yet to be in remission. I often wonder what it would be like to have normal poo's again.

Thank you everyone for your support and advice so far. It really has been comforting.

#17 CJ78

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Posted 24 September 2012 - 01:31 PM

Another update for my thread.

Following my appointment on the 3rd of September, either my specialist does not think trying another 5-ASA drug will be a good idea, or he is waiting another 6 months.
In the interim I had a sigmoidoscopy about 10 days ago to see if my UC was active or not.

The conclusion was it was still active, and as such, I am now about to start a course of steroids to try and put me in to remission.
GP appointment on Friday to get the steroids then if no improvement in 2 weeks to go back to my specialist.

If everything does improve, then my next scheduled specialist appointment is early December for a review.

I have to point this out, but our local NHS is absolutely fantastic.
Caring, personal and spot on with everything. Even one of the nurses remembered me from 5 months ago!

Fingers crossed anyway things might improve (can't complain though as I have been on no medication for about 2-3 months now).

#18 CJ78

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Posted 06 April 2013 - 04:25 PM

Sorry. Been ages since i've been on here.

 

Very hectic with work and life in general.

 

Thought perhaps it was an idea to give an update on where I was.

 

Unfortunately after a course of 3 months of steroids my colitis, whilst improved to some degree, was quite obviously still active.

Due to my age (34) my specialist decided to not continue the course of steroids and give my body a break.

 

Just after Christmas I started some immune-suppresents called azathioprine.

Dosage was week 1 50mcg per day, increasing 50mcg per day until 200mcg (or 250mcg, I forget).

I went back to my specialist at the start of week 3, had my blood tests and waited for the results. Everything was fine on my blood tests.

However, when I discussed the results with the doctor and was told a good sign as I was on 150mcg, I suddenly realised that I had not increased my dosage form 50mcg rolleyes.gif

We agreed for me to increase immediately to 100mcg, then the following week to 200mcg.

Towards the end of the first week of the increase I started feeling 'unwell', but thought nothing of it. I then the following day started getting joint and muscle pain and alarm bells started ringing. The second day of the aches and I was taking paracetamol to ease the pain, and the third day I was on paracetamol to get out of bed and walk again.

To be sure, I went to A&E as advised by our health service telephone service, and told that whilst my bloods remained fine, I was having another allergic reaction to these medications.

Tablets were stopped immediately and waited for my next appointment (symptoms eased within 48 hours so no need for an emergency appointment).

 

Following my next appointment we agreed to try back on the 50mcg of azathioprine as I wasnt getting any side effects at this dosage level and was getting some effect, even after just two weeks.

Unfortunately, within 12 hours back on the low dosage, my body must have sensitised itself to the active and was already feeling the muscle and joint pains.

 

Two weeks later I was back at my specialist for my prearranged appointment and discussed the options.

 

I appear to have tried the most effective drugs now and unfortunately had an allergic reaction to all.

Steroids had little effect via tablets.

 

There was one other common drug used, but only a 50/50 chance of not having a reaction or side effect again.

 

Therefore it was decided to try enema steroids. Apparantely they get to where they need to better (rather than the tablets) and have no side effects.

I will have had them two weeks on Monday coming, but have yet to start the course.

I am going to have to try them otherwise I will never know.

Has anybody had experience of these before and what was it like?

It is quite private and embarrassing for myself, but my wife is so supportive. I just need to get my head round it.

 

If these don't work then my specialist is stumped as to what to try next.

He has mentioned about trying this 'plan b' drug, but not sure after that.

We have discussed about taking part in new treatment testing of which he will bring up at his next internal meeting.

 

I have also read somewhere about a new drug (it was on a article posted by Crohns and Colitis UK) - somthing like TPF (it was three letters starting with a T).

 

Anyway, overall things aren't too bad.

I am going to the loo about 4-8 times a day, and finding now that the more I eat the worse it is.

Still, no weight loss!

But I am not being caught short and never embarresed to go to the loo. I have just learned to live with it now.

 

Any thoughts about other treatments are appreciated and I can bring the topic up.

 

But any experience of steroidal enemas are also appreciated blush.png

 

Cheers for now.







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