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Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 12:54 PM (GMT -7)   

In early August 2006 (when I was 19 almost 20) I was diagnosed with Crohns Disease by my local hospital, I was put on Predisone 80mg and other medications and in hospital for 4 weeks having various tests like CT scan, X ray, blood tests, barium's etc....They told my that the Crohns was not too aggressive but I require a lot of meds, I was also told I have helicobactor in my stomach (which I thought they treated) so finally after 4 weeks the hospital sent me home with a lot of meds and all was ok for a while. I saw a dietitian every 2 months and my specialist every 3 months and I felt ok for about 6months, but all of a sudden I felt sooooooooo bad!

So in 2007 when I moved back to my mothers I had her local hospital check me over for a 2nd opinion, the specialist there said I didn't have Crohns...but IBS... I was sent for a bone density scan which showed my bones had weakened due to being on the steroids for so long (darn other hospitals fault grrrr) This specialist gave me ASACOL, Codeine, buscopan, cyclizine, ADCAL D3 and sent me home.....I was in and out of hospital and my condition was up and down. my mother and I fell out and in march 07 i decided I would move out.

I moved out of my mothers and in with my GF (My now wife Stacey) - In May 07 I got sick again and went to A&E and I was told that i DID have Crohns Disease and that I needed to increase my ASACOL intake etc.... So as you can imagine I was VERY mad at the other hospital for their misdiagnosis....I was in hospital for almost 2 weeks!

OK well after that until now I have been in hospital about once a month, the A&E people just send me home with pain killers and tell me to rest!

I have been given codeine or tramadol on repeat prescription by my GP as well as ASACOL, Cyclazine, Buscopan, and my dietary supplements (from my new lovely dietitian) but I don't think that the ASACOL is working, I have been to my GP and he said increase it to 4 times a day...I have done this and taken it for 2 weeks but I seem to be feeling really ill....I have been to the hospital they did tests as said there is no sign of active Crohns apart from a small inflammation in my bowel which they gave me meds for!

I was told that the Helicobactor I had in 2006 has not been treated due to the fact I am allergic to Penicillin and Erythromycin the penicillin substitute so can not be given the medication required to treat it, so I am awaiting treatment of this problem....I also had my appendix removed as it was grumbled and could be causing additional pain!

I constantly feel sick, I have pain in my abdo on the right side, I have on and off diarrhea and constipation - I watch what I eat and have a low residue diet! Oh and not to mention lack of sleep due to being in pain and uncomfortable at night, this is really getting me down now and I don't think I can take it any more! What should I do?

I have read Remicade works well, should I ask my specialist to try me on this instead of ASACOL?

I don't know what to do an more, I feel bad for my wife -yeah we got married in 2008 :-) I have never been happier with life (apart from having this darn condition) I just wish it would go away....I am sick of being turned away by A&E I don't seem to be gettin answers from anyone!

What would you suggest? Anyone help me? am going mad here..... sad

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 3/10/2009 2:42 PM (GMT -7)   
... They gave ya a bone density scan? *I had been on steroids for a long time, but when I requested that, they turned me down because I was too young... That was last year... I was 20 years old...* //@.@\\'...

Err... at any rate, if there isn't too much inflammation going on, I don't think Remicade would be a good idea... and I'm sure most GIs would agree with that... I don't think its Crohn's then... that's causing the problem... It could be that heliobactor...

Out of curiosity, what does the A and E stand for?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/10/2009 3:11 PM (GMT -7)   
eyes Surprise surprise, the NHS can't make it's minds up. No Help Supplied here then !
A couple of queries to help make things a wee bittie clearer :
You say you have been put on medications for the inflammation - what are they ?
You say they have done tests; presumably this includes a wbc (white blood cell) and cbc (complete blood cell) count and possibly also an IgE (Immunoglobulin E) level to check for signs of active inflammatory disease, but have they done a colonoscopy, or a sigmoidoscopy ? (I'm guessing no as people tend to mention when they've had a camera shoved up their backside, it sticks in their...memory somehow ! smilewinkgrin)
Also, what made them decide that you definitely DO have CD ? It often takes years and lots of scopes before they get enough "hard evidence" to diagnose. I don't think the NHS does the Prometheus Test that is used in the USA.
Asacol is really quite a lightweight drug, as is Buscopan (I think that is even available OTC). Steroids do tend to be the first drug of choice and Pred is the main one of those. If you were only on that for six months I would be surprised if that was long enough to thin your bones by any major amount; six months is the maximum length of steroid treatment used in the UK but in the USA it can be that many years. (And yes, that leads to problems, not least the body stopping its own manufacture of steroids.)
Remicade and the other biologics have a lot of side effects, and they tend to work for a limited time only in many people. Probably a long way off for those reasons and because of NHS timescales and budgets.
Cyclazine and ADCAL D3 I don't know of - I am guessing that ADCAL is Vitamin D3 and that Cyclazine is an antibiotic, but frankly it strikes me at first impression that you are being treated for a fairly minor ailment (IBS) rather than a much more severe one, CD. And anyone who reckons that there is no disease activity when there is visible inflammation on a scan, you can't sleep for pain, have frequent problems with bowel movements, are going to A&E once a month and have had your appendix removed, needs his @rse kicked loudly in front of other colleagues pour encourager les autres !
On the plus side, at least they are thinking about your diet - better than I've ever had from a gastroenterologist - and are giving you supplements, hopefully including vitamin B12 which will help keep up your energy levels and ward off pernicous anaemia.
The only recommendation I would have for you is to discuss the SCD diet with your dietitian - bearing in mind that good though they are, NHS dietitians are not trained to know about abnormal nutrient absorption in great depth and won't necessarily know about various diets that Crohnies use to manage whatever variety of CD thay have. (Low residue works great for some, is dire to others who need high residue. Go figure.... eyes)
Oh, and take probiotics ! They cannot do harm, although you may get a dose of the trots as they wipe out nasty strains of bacteria - but by gum, there are a lot of people on this forum that swear by them !
nono Please note, I am only a lowly patient, and an impatient one at that, the above are only opinions ! wink

Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 3:55 PM (GMT -7)   

A&E means accident and emergency

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/10/2009 4:01 PM (GMT -7)   
I'm on Asacol too and was told that it is a lightweight drug.They now want to put me on Imuran.
You say you had your appendix removed. Did they see any immflamation in your intestines? You'd of thought they would at least take a look.
It might be time fo a colonoscopy to help determine if it's Crohns.
You said that you were on Tramadol? Did you have any reaction to it by chance. I had chest pains and difficulty breathing and they had to discontinue the use of it.

I hope you get your answers so that you can begin to get well.

Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 4:08 PM (GMT -7)   

I have routine blood tests, yes I have had my WBC done, they said last time I was kept in hospital my WBC were low so I was on a drip of some sort to help with that, also I had low potassium as well....I have high levels of reb blood cells in my body hence routine blood work....

YES I have had many colonoscopys, endoscopys and a laparotomy aswell....I just forgot to mention all the speific details I had done, I have had so many since 2006 so as you can imagine its hard to remember them all LOL I tend to try and forget them lol

I was on PRED for about 9-10 months... at 80mg

The supplements I have are Calogen (pure fats) and Fortisip (Ensure) they are from the dietitian she specialises in ppl with Crohns, IBS and UC!

I take multivitamins anyways I always have done, but yeah ADCAL D3 is due to deficiency in Vitamin D and calcium...I am also B12 deficient so I am taking those supplements too....I do feel tired constantly though and even when I do manage to fall asleep sometimes I can sleep for 18 hours n feel like I have not slept!

What would you suggest I do? I am due to see my GI in June....I appreciate your responses! Thank you!

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 3/10/2009 5:58 PM (GMT -7)   
That seems odd, a HIGH WBC would indicate inflammation....it shouldn't be low. Also, I know that for me, my RBC is extremely low...you seem to be the opposite! What exactly did they see on your colonoscopies? To me, it doesn't sound like it's Crohn's by the blood work, but I am newly diagnosed myself so I may be misinformed.

Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 6:21 PM (GMT -7)   
I had low potassium sorry not low WBC

Veeka Vampire Volkova
New Member

Date Joined Mar 2009
Total Posts : 16
   Posted 3/10/2009 6:22 PM (GMT -7)   
I had high levels of haemoglobin not sure what causes it though....my potassium is very low due to Diarrhea and vomiting
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