Hi, I'm Back With a New Diagnosis...Need Help!

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SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/5/2009 3:52 PM (GMT -7)   
Hi

I am from the UK and I joined HW about 4 years ago...At the time I was having lots of bloody mucus and just felt really ill...I was referred by my GP to my local hospital for tests which involved the usual colonoscopy etc...according to the assistant giving the scope I had UC and Proctitis.

The whole thing made me feel just really wiped out, but the pain from the Proctitis had to be the worse pain I have ever endured in my life...(and I have had gall bladder pain, kidney stones pain, child birth twice and even gout in my big toe)...it put me on my back and bed ridden for most part of 18 months, but this was because of the high doses of Tramadol... Codeine helped but made me sleep for long periods at a time.

The consultant surgeon told me that I had proctitis and going by the findings of the scope the disease entered the colon by about 6cm...he did say at the time that there might be an aspect of Crohn's too...he then released me on to his team thereafter....and this is where the other nightmare began.

To be honest, i could write a book on what happened afterwards but the long and the short of it was this...no-one could agree if I had Colitis or not...the guy who scoped me said I did, the consultant said I did, but the rest of the team (apart from one, but he left the hospital shortly after seeing him) said it was just Proctitis and Proctalgia...they drove me nuts...all I wanted was a definitive diagnosis and get on with what I had to do...I have a great GP who after seeing me in such a state decided to refer me to another consultant in another hospital but by the time I was given an appointment to see him I was into remission...time I got the scope I was definitely in remission...so it became unspecified colitis....I should say that I was on Asacol and Omeprazol throughout this time...(Had upper GI probs too)

Had a few years of relative calm but have always had a discomfort on my upper left hand side...and for the last 4 or 5 months or so it started the with the usual gurgle (like bubbles trapped inside on my upper left hand side)...I started to feel tired and exhausted and generally unwell....I got a really dry mouth, with insatiable thirst...I was tested for Sjogrens disease which came back negative, was scoped for Barrats Oesophagus because upper GI problems, so back on Omeprazol...was tested for Diabetes for which the tests came back as borderline....I have a swollen abdomen, I've become quite gassy and although my bowel movements have never been what I would call normal, I started to get diarrhoea...blood and mucus and I think pus too....Psyllium husk is my saviour as it does keep things together.

The thing is, I was under a surgeon ready to have a gastric bypass because of my huge weight gain during my remission (and a history of yoyo dieting) but while discussing my history (of course I had to mention it) he decided to scope me again with a full colonoscopy....had the scope last Friday and this is what the findings say:

In the descending colon there were numerous apthous ulcers. There was marked inflammation and erythema at the splenic flexure narrowing the lumen. Despite position change was unable to advance the scope beyond the splenic flexure. The rectum appeared relatively normal with a normal mucosa.

The doctor could not get that scope any further that my upper left hand side (the place I have been complaining about for ages)...even with a paediatric scope and position change.

The diagnosis on colonoscopy was Chrohn's....(but as several biopsy were taken, I am awaiting definitive diagnosis)

My GP think says that the key is the fact that nothing showed up in the rectum this time (thank God) is that I probably never had UC to begin with.
I was confused though because the doctor who did the scope told me I have Crohn's Colitis and I thought I had 2 diseases...But he explained that was because there is inflammation in the colon, a terminology as such.

I am angry with the original hospital as even if it were difficult to diagnose, the biopsy at the time should have stopped any argument...but I think they only biopsied the polyps...I don't know now.

Anyway, I'm back on 6 x 800mg of Asacol per day...taking 3 in the morning and 3 at night.
I already take Omeprazol
I take levothyroxine too

So as you can imagine, I am in a complete head spin over this...I have to learn all about this condition now and try to get better...I am worried about this upper left hand side of mine or the splenic flexure....but I should receive an appointment for a CT scan within the next 2weeks....What could they possible find?

Sorry my post might be a bit long but I am really in a bit of a state...Hope some IBD sufferers can help me with this new dilemma.


(((good to see some of the people I saw here before like Quincy, Red etc.>>>I hope yall doing good)))

(((hugs Snow)))






<FONT color=#0000ff>asacol enemas (stopped)




[color=#0000ff>omeprazole>

<FONT color=#0000ff>tramadol (when required)




<FONT color=#0000ff>evorel 50


<FONT color=#0000ff>

Post Edited (SnowCrystal) : 9/6/2009 1:54:26 AM (GMT-6)


SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/6/2009 12:45 AM (GMT -7)   
Was hoping that someone could just advice me about having CD....






<FONT color=#0000ff>asacol enemas (stopped)




[color=#0000ff>omeprazole>

<FONT color=#0000ff>tramadol (when required)




<FONT color=#0000ff>evorel 50


<FONT color=#0000ff>


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/6/2009 5:44 AM (GMT -7)   
Hello,

I am sorry you are experiencing all this. Do you have a follow up appointment with your doctor to discuss the results? I think you need to talk to the doctor and he/she can tell you the exact problem and together you can chart a plan of treatment. In the mean time, check out the first Topic called "Crohn's Disease Resources" It has lots of great information that may help shed some light on what you are experiencing.

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/6/2009 6:32 AM (GMT -7)   
Hey Snow Crystal,

And welcome back to Healingwell. The forum is usually much slower on the weekend, so thats why you haven't gotten to many answers yet. To me it sounds as is when they did this most recent scope they couldn't get thru because you have a stricture or an area of narrowing there. I am hopeful that the CT will show more. You will need to ask the doc if he thinks the stricture is from inflammation or scar tissue. If it is from inflammation, meds will help to tamp down the inflammation, but if it is from scar tissue, then unfortunately no meds will heal it, and surgery may be needed. But don't panic, sometimes they can do a repeat scope and dialate the area open.

FallColors is right, if you look above in the Crohns resources you will find alot of information about Crohns. Feel free to ask any questions you might have, I am sure one of our wonderful members will be along to help out. Good luck!

Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/6/2009 10:32 AM (GMT -7)   
Thank you guys very much.

I have to go back and see my bariatric surgeon on Friday about the possibility of having the weight loss surgery as he is the one that referred me for the scope in the first place...(I bet my chances are slim now)...I doubt the biopsy results will be in by then, but I will take the findings with me and at least he should be able to tell me if I am still a candidate for weight loss surgery....(?)...But with regards to the results of the scope, that side will now be dealt with by the gastroenterologist of the same hospital...(Thankfully as I don't want to go back to the other hospital...I actually think they misdiagnosed me back then)

I will have the CT within the next 2 weeks and an appointment with the gastroenterologist shortly after that...By NHS standards this is pretty quick, but the doc who gave me me the colonoscopy did say he would mark it as urgent...I must admit that worries me a little.

Going back to the weight loss surgery aspect (WLS)...Am I a rarity in that I never lose any weight during flare-ups?...or am I right in thinking that this is because there is no ulceration or inflammation in the areas that would cause malabsorption? I should add I have always declined steroid treatment so far and only taken Asacol and Omeprazol for the upper GI problems I have...(which I'm starting to wonder might have been due to Crohn's)

Where are you guys from?

My husband is an American...He is from Oklahoma...but we now live in the UK (London)...we were in Williamsburg Virginia last year which I absolutely loved and that is where we want to live in a few years time (Hopefully)..

Anyway thank you once again for your replies and advice...means a lot.

(((hugs)))






<FONT color=#0000ff>asacol enemas (stopped)




[color=#0000ff>omeprazole>

<FONT color=#0000ff>tramadol (when required)




<FONT color=#0000ff>evorel 50


<FONT color=#0000ff>


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 9/6/2009 2:05 PM (GMT -7)   
Hi SnowCrystal,

The bariatric surgeon is less likely to give you a WLS that would lead to malabsorbtion, when a diagnosis of Crohn's rather than UC means that inflammation could occur in the small bowel at some point and cause more malabsorbtion.

The CT is likely because the doctors were unable to see past the splenic flexure. Personally, I had a colonoscopy and the doctors were unable to get past the ileocecal valve, and so I had a CT the same day, a few hours later. It will allow your doctors to determine if there is inflammation in the bowel above where they could not advance the scope, either small or large bowel, and if the bowel on the other side of the stricture is dilated.

Again, my personal experience, was a CT-E or CT-enterograph. That is where you also have to drink a contrast material (~3 cups of watery liquid) before the imaging so that the doctors can easily see your bowel. You may need to do another prep before the CT--I had to.

Such a stricture in your bowel is somewhat urgent, because you are at risk for an obstruction, or even perforation. An experienced radiologist should be able to tell from the CT whether the stricture is due to inflammation or scar tissue, and that will help determine whether the next step is surgery or a change in medication.

I am from the US...currently in Illinois. Welcome back to HW and best of luck.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E


SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/7/2009 12:57 AM (GMT -7)   
Thank you Illini for your response.

I have had discomfort in the area of the splenic flexure for about 4 - 5 years and since my last flare...although not hugely painful it has always felt uncomfortable...this area literally makes the strangest noises and it feels like bubbling...So it's been there a long time...(This is what I mean by the original hospital being somewhat useless, all they gave me was triple the stress I went in with...I was hospitalised twice whilst in flare and although because the excruciating pain in the rectum, I told them about this discomfort in the splenic flexure).

I belong to a forum for WLS patients both pre-op and post-op...none of them have Colitis, but 2 of them have Crohn's and both has a full gastric bypass...I was shocked because like you said Crohn's has a tendency to turn up anywhere. I also read somewhere that a contraindication of total parenteral nutrition was gastric bypass...I can understand that as your intestines would have been totally "re-plumbed" so to speak.

I was being offered a gastric bypass before the Crohn's findings but now I am not going to have it, but I am hoping for a gastric sleeve where you are not anatomically altered in any way...they literally reduce your stomach...they remove the round part of the stomach that contains the hormone ghrelin (an overabundance of ghrelin causes continual hunger)...I have googled the combination for gastric sleeve and crohn's and the data (if reliable) says that the small percentage of obese Crohn's sufferers benefit from this type of surgery but only performed whilst in remission of course...Well I have an appointment this Friday so I guess I'll know one way or another.

Illini, what was the outcome for you when they could not get past the ileocecal valve?...was it scaring or ulceration?...

Is it ok to take psyllium and pre-biotics with Crohn's?...

(((hugs)))
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
HRT for my sins

Pain meds as and when for back pain...(paracetamol or tramadol)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/7/2009 6:35 AM (GMT -7)   
Snow I would avoid fiber for the time being until you find out more info on your stricture. I have the stricturing (scarring) type of Crohns, and too much fiber is a no no for me, as it could trigger an obstruction. Many with Crohns take Probiotics, as they are very valuable in repopulating the good bacteria in our guts. Not sure about the prebiotics. I am sure someone else will be along with that answer. PS: I am in southern California in the states.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

SnowDaisy
Regular Member


Date Joined Feb 2006
Total Posts : 422
   Posted 9/7/2009 1:08 PM (GMT -7)   
Thank you Gail

Ops, I mean't probiotics...lol.

It does sound like a stricture, doesn't it?...I love my psyllium as it stops the watery d...I'll ease off until I get my appointment...I am really hoping that my appointment comes through quickly so that we can get to the bottom of it...(if you'll pardon the pun that you yall must have heard a thousand times...lol)...

Thanks once again for your advice.

(((hugs)))
6 x 800mg Asacol daily
1 x 30mg Omeprazol
150mg Levothyroxine daily
Psyllium
Pre-biotics
HRT for my sins fo being a woman...lol

Pain meds as and when for back pain...(paracetamol or tramadol)


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 9/8/2009 2:23 PM (GMT -7)   
Hi SnowCrystal,

In my case the CT-E showed inflammation in the area where they could not get the scope past, about 5-6 cm at the junction of the small and large intestine.

I also get discomfort and loud strange noises, but in my case, from the lower right--where the ileocecal valve is located, where I had inflammation. Probably I have scar tissue there and/or inflammation which is creating a stricture. I should be going back to the GI in the next few months and will find out the status.

Probiotics are fine--I personally take two: VSL#3 and Primadophilus reuteri by Nature's Way. I find that they help me feel better.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E

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