• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hey Ho!

wellen1981

wellen1981

Just found the forum - currently having a very bad flare up (thanks lettuce, you swine!)

Just got diagnosed with crohns about a month ago after 2 years trying to seek medical help for problems i have honestly had for about 10 years now.

Had a colonoscopy back in Oct 2013 and finally an MRI scan in March 2014 which provided enough evidence to support the diagnose of crohns finally.

Currently on the back-foot due to having my relationship of 6 years break down due to this and have moved countries back to where I grew up.

Not really sure what else to say other than Hello Everyone!

Im on steroids (budesonide?) to try and knock out the problems (on a 10 week course of 6weeks 3 a day, 2 weeks 2 a day and 2 weeks 1 a day). I have been advised by specialists that it will take 2-4 weeks for the positive effects of these to kick yet this Sunday coming will be my 4th week of taking them and with that evil salad i had few days back, i think it will take a miracle for these meds to do their thang!


Keep it positive peeps,
Mark
 
T

Tuff

Hi Mark,
Welcome to the forum. I'm sorry you're having such an awful time. Not only the Crohn's, but your relationship as well. Steroids are usually taken initially. Has your specialist said what he will put you on next? Have you had your vitamin and iron levels tested? Many of us are on supplements. There's a lot of good information on here that you may find helpful. Hang in there, it gets better.
:ghug:
 
Trysha

Trysha

Moderator
Staff member
Hello mark,
Sorry to hear you are going through the wringer, but it will get better.
As Tuff said the journey inevitably starts with steroids (not necessarily though)
and then it is usual to try imuran (azathioprine) and hopefully you will be given the choice of progressing to one of the biologicals such as Remicade or Humira.
There has been a measure of success with the biologicals for a fair number of people.
Currently Dr Hal Gunn has a trial program in which an injection given acts on the innate immune system and it seems this approach has great promise.In case you may not be interested or understand this approach it is similar to having an immunisation.
There is lots of information about it and many other things in the forum and you might like to take a look around.
I am sure other members will soon be along to help you in the journey of crohn's.
Feel better soon
Hugs and best wishes
Trysha
 
wellen1981

wellen1981

So I finished the steroids and went to the GI specialist 3 days after to have 'a chat' I explained my position regarding how much I had come to learn about the subject and I described my pain usually being originated in the lower left quadrant when my pain is at its worst (I'm a lefty btw).

I advised him that I would not entertain the idea of destructive surgery and I also would not be willing to accept the need for a colostomy bag as the correct way of dealing with this 'condition' based on my research findings.

He had his work cut out for him with me but said he wanted to have a look at the current condition of my abdominal area using a colonoscopy as he said it was unusual for sufferers to complain of pain in the lower left it is usually/normally the lower right where people have pain - btw it was in my lower right (I think terminal ileum) that they found ulcers and narrowing of the intestinal wall during the previous colonoscopy I had in a diff country.

I have no intention of barking up the wrong tree with doctors and ending up on countless inappropriate meds like most sufferers seem to end up. They neither deal with the root cause of the problem, and end up doing their own kind of harm in the long run.

My stance personally is to become as educated I can on the subject by reading everything (no matter what country of origin) i can find and then I will filter out all the unfounded crap, all the assumptions, all the unfounded debunking, all the naysayers until all I am left with is cold hard facts. I then plan to use these facts to make my own informed decision at a personal level as to what exactly this condition is and I will do this only on the basis of things that are proven to be known.

Just because Western Medicine isn't making money from a cure doesn't mean a cure does not exist.

My stance is bound to ruffle many feathers on here as I can appreciate there are a lot of people who have just put all their trust in healthcare professionals and are likely to find it hard to admit to themselves that they are being screwed over. The results speak for themselves, everyone a slave to the meds when there are other ways.

I feel personally for everyone here on this forum trying to carve out a life with this 'condition' but there are simple things at play here and they are just being ignored by those that would have us keep Pharmas rich.

I want my life back, and I'm going to do everything I can to get it back.

Also I got my bloodwork back today and got to see the actual internal data - everything and I mean everything, was in normal ranges.
With my understanding this did not surprise me as I would only expect my blood to be an issue if the lining had been perforated (eg from the infection being very advanced and prolific) and then poisoning had started to occur.

A lot of people are often surprised to find their bloodtests are normal, I find it more surprising that people don't understand that as long as the infection stays at a certain level or less, there should be no reason that this would affect our blood.

Often it can be found that white blood cell counts are high but this can be expected as the body is trying to react in its preprogrammed way to the bacterial infection.

I currently am unsure if my white blood cell count was normal due to the effect of the course of steroids i have just completed and hope to be able to see if a future blood test does indeed show elevated white blood cell count levels once the steroids effect have completely worn off. The reason i suspect this is due to the steroids having the effect of reducing the bodies natural immunity response.
 
tots

tots

Location
Austin, Texas
My blood work has only been out of normal range once.
No matter how bad I am it's normal!!

It's a hard diagnosis to get, then treat.
And in my case to keep. I moved from Washington to Texas and had to prove to my Dr again how sick I was!

Good luck,

Lauren
 
nikimazur

nikimazur

Unfortunately, for me, I've haven't had normal bloodwork for the past five years (starting two years before my diagnosis). Having a scientific/medical background, and seeing this numbers on paper (I have a copy of every single lab/test/scope I ever had), has made me realize that things are not normal inside me. I hate medications, and was able to go a full 12 months without, before I ended up in the hospital due to a severe flare. I absolutely HATE western medicine, but I also realize that without it, I would be dead at this point. It's a tough battle, but it's so refreshing to see someone who is dedicated to educating and informing themselves as much as possible.
 
wellen1981

wellen1981

nikimazur said:
Unfortunately, for me, I've haven't had normal bloodwork for the past five years (starting two years before my diagnosis). Having a scientific/medical background, and seeing this numbers on paper (I have a copy of every single lab/test/scope I ever had), has made me realize that things are not normal inside me. I hate medications, and was able to go a full 12 months without, before I ended up in the hospital due to a severe flare. I absolutely HATE western medicine, but I also realize that without it, I would be dead at this point. It's a tough battle, but it's so refreshing to see someone who is dedicated to educating and informing themselves as much as possible.
Click to expand...
That is the madness of it I guess - at my current stage in this journey I am completely against surgery but if a day came where it was surgery to avoid death then I would be running towards that surgeons scalpel!

I just hope I never mess myself up enough to need the surgery for blockages etc
 
krika

krika

Location
oslo, norway
Hi and welcome.
Sorry to hear about you having a hard time.
I reacted in some ways like you and before I had my colonoscopy I told the GI that I would rather die than have a bag on my belly. When it comes to western medicin and pharmas getting rich, well, cant say I dont agree, but its the best option at the moment. If you find better ways, be sure to share. Many people have tried all sort of diets and all kinds of things, which didnt work and many ended up in hospital.
So I hope you find a cure, I would love to get my life back aswell :)
 
EW8

EW8

Hey Mark - I am the same as you. Read everything, keep myself well informed, challenge things. Doesn't always make us popular. Check out Professor John Hunter (cambridge) and the Lofflex diet. I found him and this diet 3 years ago having read some of his papers. I phoned him and he took me on as a patient and I started his diet. I have just had 2.5 years of my best health in 20 years. Am currently having a slight flare because I took my eye off the ball. Lofflex has a plus 90% success rate for those willing to stick to it absolutely. I find it perfectly manageable as playing golf more important than eating cake. Am just down the road from you in Glos. - my other half works at Birmingham Uni. Liz x
 
wellen1981

wellen1981

Hi all, sorry I haven't been back for a while...

Had the flex sig 2 weeks ago as my specialist wanted it done as he doesn't understand why i get pain in lower left side (pointless exercise as they don't even understand the condition). I'm just waiting to hear back via letter if they have anything to say...

Here's food for thought for everyone - it is literally 2 years to the month since i got very ill with this and always had pain (in the lower left side) up until 1 month ago.

The only thing i did differently is change my diet (that's right no meds).

From reading up on things it is suggested that food intake is the fuel for the bad bacteria and fructose, lactose and yeast are what all the bad bacteria is thriving on. All i have done is simply limit the amount of these things i am eating.

It is very much early days and a slow, patient, process of elimination but i have been eating rice crispies, rice, some meat (chicken and beef) and some high-in-omega 3 fish.

By no means am i saying my current diet is giving me the nutritional balance that i need, but like i say this is my work-in-progress and next i plan to look into vitamins i need etc and hopefully i can be tested for all vitamin levels to see specifically what i am lacking so i can carry out targeted supplementation.

Mark

edit: It is interesting to read the RHB trial data sheet (http://www.clinicaltrials.gov/ct2/show/NCT01951326?term=rhb-104&rank=2) and note that they sadly arent including anywhere in the UK and also to note the trial ends Nov 2016
 
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