New and Scared

[EmmyMichelleG]

Hi! My name is Emmy. I'm 23 years old and was diagnosed with Crohns in early 2013 and have successfully managed it up until this point. My diagnosis is mild. I only take Pentasa 500 (3 capsules 2x a day) along with a probiotic and Pantaprozole 20mg to manage acid reflux. Recently I had a flare up and now the fun begins.....

I underwent a CT scan yesterday. The results were not good. I have a lot of thickening, inflammation outside of the colon etc. I don't know if my Pentasa stopped working, isn't working well enough, or really what is wrong with me at all. I recently moved to Cali and have started working with a new GI doctor who recommended putting me on a prednisone treatment for 2 months along with 6mp accompanied by my usual pentasa.

These drugs have horrifying side effects as most of you know. My doc basically explained to me that I am going to gain weight and struggle with acne. I researched the 6mp by myself and found some things I probably didn't want to find out, including the risk of hair loss, fatigue, insomnia in some cases. I don't know. Perhaps since my crohns is mild, the dosage won't be high enough to experience any of these?

A little bit about me...I am young, active, fit and strong. I ride horses 6 days a week and practice yoga/pilates. I try to watch what I eat but will typically never turn down a beer or a tasty mixed drink. I'm 130 something pounds and plan on losing a few here and there. I have clear skin and thick hair....my life is great and I don't want it to go downhill.

In short. I'm scared. I don't know what to do and this is all so far above my head. I hope someone sees this and can offer some support. It's nice to meet all of you

 

[Lady Organic]

Hi and welcome. seems like your new GI has a good plan. Pentasa is not enough of a treatment for you. 6mp is stronger drug hopefully will bring full remission to you, as it does for me. im on 50mg/day. make sure you take it on a empty stomach and wait 45min up to an hour before eating.

It is not sure which side effect you will get from pred and 6-mp, but you will know quite soon! I have never gained weight nor acne on pred. Only anxiety, hyper feeling, sleeping just 3 or 4 hours a night. prednisone will be used for 2 or 3 months usually and any symptom shall resume at the end of its use.

With 6 mp, which your GI will want to prescribe you for the long term as a maintenance therapy, caused me nausea and feeling unwell for the first couple of weeks then zero known side effects afterwards.

if you respond well to these treatments, you shall be able to pursue your daily activities without troubles. Good luck!

 

[my little penguin]

Breathe
Ok
Breathe some more
Pentasa is a 5-Asa so it acts as a cream on the intestine but only gets the inflammation on the top layer. This makes it a good choice from UC
It is not an approved mono therapy for crohns
Most GI try Pentasa but feel it's like giving aspirin for a brain tumor
Not going to help too much but not going to hurt either .
Pred is a steroid
DS was DS at age 7 and is 11 now
He has been on Pred three times
Each one was different interms of side effects
It won't make you gain weight unless you eat more
The first time DS was formula only plus Pred not weight gain

6-mp is very low dose
The possible side effects were probably for chemo siding which is very very high
DS took 6-mp for 8 months but the med kept raising his liver enzymes
And never reacted therapeutic levels .

Meds have possible scary side effects
Under treated crohns has given scary side effects

There is more danger with getting in a car everyday then taking crohns meds
Honestly
Hope things calm down and 6-mp works for you

 

[EmmyMichelleG]

Thank you for your responses! Needless to say i'm a bit freaked out lol. I've always been somewhat healthy until all of this went down. I have been given options but doc seems to think steroids and 6mp are the best option. I don't know anything about either drug but I understand that I will be started at a low dose.

Will the lower dosage result in fewer side effects? It sounds silly and vain but I care a lot about my appearance and the way people view me. People are going to start treating me differently when I gain weight and have a fat face and thinning hair. I don't want that....nobody should have to deal with that.

However, getting better is and should be my main priority. I do not want to have to go thru surgery from an obstruction. I have a scheduled colonoscopy next week, could bring forth more results.

 

[my little penguin]

DS never lost any hair
Moon face only after 4 moths of Pred
Not the typically 6-8 weeks

 

[ronroush7]

Sending you support. This was just with me but I got puffy from prednisone.

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