From Pernicious Anemia to Crohn's disease

[Sadiesweeet]

Hi i'm Sadie, 20 from the UK and newly diagnosed with Crohn's (as of last friday).

I had been diagnosed with pernicious anemia and Irritable bowel syndrome at the age of 16 and had to have 3 monthly b12 injections and was just told to eat wheatabix in the morning by my incompetent doctor. I have had pesistent and chronic diarehea for the last 4 years with occasional stomach pain and bloating but learnt to live with the problem up until 2 weeks ago when i experiences the worst pain of my life.

Long story short i was admitted to hospital and diagnosed with Crohns by a CT Abdominal scan. My crohn's is apparently fairly severe and i have also develloped an abcess which i am taking anti-biotics for. The strange thing is, i have experienced absoolutely no pain since leaving the hospital (yes i count myself lucky and am not complaining) but they have put me on the 6 week elemental diet.

I am aware a lot of member have gone through this and it seems daunting at first (been on it for 4 days) the drinks i have are orange flavoured and are fairly paletable accept the anti-biotics is causing slight nausea.

I am just a bit confused with this disease at the moment as it's odd i am experiencing no pain or anything and still have to under go such a drastic treatment. For a 20 year old on her summer break no eating and drinking alcohol when there are so many celebrations going on is horrible. I just feel like i'm going to be losing weight and suffering on this diet when they could have just put me on another medication...

Any advice would be great!

 

[David]

Hi Sadie and welcome to the forum I hope you don't mind but I moved your post here to its own thread so that you can get the welcome you deserve.

I can understand how frustrating it must be to be put on an elemental diet when you're on your break, especially if you're feeling good. But as your Crohn's is serious, I agree 100% with what they're doing as elemental and enteral nutrition are fantastic treatment options. Hard to take of course, but they're great for knocking the disease down. Some studies showcase that it's as good as prednisone in fact.

I realize you're not in pain now, but take this disease very seriously and stick with it. If you'd like to connect with others on elemental nutrition, we have this forum dedicated to it.

And of course it was probably never IBS you had, just Crohn's that whole time. And the pernicious anemia is almost assuredly due to Crohn's Disease. That someone didn't take B12 deficiency and "IBS" and realize it was likely IBD is unfortunate.

Again, welcome to the community!

 

[Angrybird]

Hello Sadie and :welcome: to the forum. The elemental diet is tough but as already mentioned can do such a good job and calming things down without having to deal with the potential side effects of steroids.

Has the doc mentioned anything about treatment after the 6 weeks are up or are you due back to see them again soon to discuss this?

AB
xx

 

[Sadiesweeet]

Hi David,

Of course i don't mind. I was a bit lost on the forum so just posted it there.
Yeah i understand the importance of the diet and i definitely will stick to it, the only thing im worried about is if im on this diet for 6 weeks ( i'm 5ft 7 and 62kg usually) and have already dropped to 57kg in the last few weeks of a flare up and my diet. I don't want my weight to drop dangerously low

Angrybird- thanks for the warm welcome and the doctor has said he will re-scan and give me a colonoscopy when my abscess has cleared to see what to do from there. Either put me on steroids or inflaximab or if my disease has progressed well quite quickly start me off as normal and see how i go. I only had one flare up in 4 years so fingers crossed!

 

[Angrybird]

How many drinks a day are you on? One thing I always remember from being on these is that the dietician should calculate a required calorie intake to avoid weight loss and adjust the amount you have accordingly if you start dropping the pounds.

 

[Sadiesweeet]

I'm on 4 'Elemental 028 extra' a day! I'm starting to feel much better energy wise on them now but i don't think they have many calories in! It's very hard for me to even drink 4 a day though as it takes me like an hour to drink it all.

One half of me is hoping she increases the amount of cartons on thursday and one half of me doesn't because it's an effort to drink them! But i suppose my health is more important eh!

 

[Angrybird]

I was on them not long after I was first diagnosed and unless they have changed they come in cartons about the same size as Ribena? I was started on 8 a day but eventually got so I could only manage about 6 as it got hard to drink so much liquid. I was on these for two weeks before I flared again and had to go back to steroids

 

[Sadiesweeet]

Aww that's a shame! I seem to be doing fine on them as of now and my flare up only lasted a couple of weeks. I think i should probably be drinking around 6 but will have to see the dietician! It isn't very many calories at all... the doctor can't put me on steroids because of my abscess and he said he doesn't "want to ruin my beautiful face" not sure what that's meant to mean...

 

[Angrybird]

Steroids can cause issues with acne and also can make you look bloated - we call it the moon face, so this might be was he was referring to.

 

[Sadiesweeet]

Ahhh i see, well that's kind of scary when i'm a model and dancer... but health comes first...

 

[Sadiesweeet]

Hello guys just a little update. I've been on the elemental for over a week now and my GI has said I'm doing well. I have no pain or bloating and I'm actually enjoying the drinks. The only odd thing is I'm continuing to have diarehea. Not necessarily urgent but when I need to go, it's not solid at all. It is like water with bits in... (gross sorry) and I'm worried about this as people have said the drinks have made them have normal stools...

I'll mention to my doctor next week but wondered if any of you have had the same experience!

 

[Angrybird]

Thanks for the update, I am glad you have noticed some improvement. I didn't have the continued D with these drinks but when I was on the Modulen shakes last year I did still have it with a lot of urgency for a few days. Definetly worth mentioning to the doc though.

 

[Sadiesweeet]

so update again!

Anti-biotics and elemental for another two weeks and then endoscopy.

He want sot put me on azathiaprine after that long term which is quite scary...

 

[David]

Azathioprine is indeed a scary sounding drug. And yes, there is a possibility of a variety of side effects. However, it can also be a fantastic medication and as long as your doctor tests and monitors you properly, the chance of serious side effects is greatly diminished.

We have a subforum for people on Azathioprine located here if you would like to connect with others on it. You'll notice people in there talking about Imuran (the brand name of Azathioprine) and 6-MP (what Azathioprine turns into in the body) so they're in the same boat as you.