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Newly Diagnosed Crohns and Seeking Treatment Advice!

Hello All—I’m new to the forum and was hoping to both share my crohns story and hopefully get some advice as well to help me with my next steps in dealing with this disease.
I am a 24 year old female and up until recently, I have been quite healthy. It all started about 1 year ago when I developed an anal fissure. I had no other issues, no diarrhea, no pain, nothing. Within a few months the fissure didn’t heal, and then a few months after that it still wouldn’t heal after my doctor had tried injections, creams, you name it. Finally I opted for the surgery to rid me of the fissure. I was told it would take up to 2 weeks to fully heal but unfortunately for me things only seemed to get worse after those 2 weeks. The fissure pain had gone, but I now had a chronic wound from the incision site that was giving me extreme pain and would not heal. I ended up having another surgery to clean up the wound and I had to take a total of 6 weeks off work. During these 6 weeks (and up until now) I’ve had non-stop diarrhea. At first I figured it was due to the stool softeners the surgeon had prescribed me, but after stopping those and seeing no change, it was clear that something else was going on.
Fast forward another few weeks and I ended up having a CT scan which showed some definite inflammation and ulcers around my small bowel. I finally got referred to a GI and she set me up for all the tests and scopes needed to diagnose me. Had the scope last week and it turns out it’s definitely crohns. It’s weird because aside from the diarrhea, I have not had any other symptoms. No abdomen pain like I know so many others experience. Oh—and the surgery wound is still not fully healed, I’d say it’s probably about 60% healed.
After the scope last week, she recommended I start on 40mg’s of prednisone for the next couple months until another medication (Imuran) kicked in. At the time it was a shock, and I was likely still somewhat impaired from the drugs that I had been administered during the procedure. I ended up telling her that I needed time to think it over, as I know there are some horrible side effects that can come from steroids. While I’m not in need of surgery, I did have some narrowing in the opening to my small bowel. I guess the worry is that without taking care of the inflammation, a blockage can occur.
I guess I have a few questions for those of you reading: What’s the deal with Imuran not kicking in till 3 months? Is waiting the three months a bad idea? Will the Imuran do the same thing in three months’ time that the prednisone will do? Any advice is welcome!
 
Hi Catharine, reading your story felt nearly like reading an exact carbon copy pf how I was diagnosed! First, sorry to hear you have been diagnosed, but it's great that you are getting informed. It took me many years to really go on the internet and read up everything I can on Crohn's, not just the superficial stuff, but also the studies, posts on forums like this etc. It was really an important thing to do, especially at the beginning when the whole thing is quite a bit overwhelming. Most people rather opt to ignore the details or the whole thing, because that is just easier (that's what I did...).

I am a 24 year old female and up until recently, I have been quite healthy. It all started about 1 year ago when I developed an anal fissure. I had no other issues, no diarrhea, no pain, nothing. Within a few months the fissure didn’t heal, and then a few months after that it still wouldn’t heal after my doctor had tried injections, creams, you name it. Finally I opted for the surgery to rid me of the fissure. I was told it would take up to 2 weeks to fully heal but unfortunately for me things only seemed to get worse after those 2 weeks. The fissure pain had gone, but I now had a chronic wound from the incision site that was giving me extreme pain and would not heal. I ended up having another surgery to clean up the wound and I had to take a total of 6 weeks off work.
Things started out for me quite similar, I suffered from an anal fissure about 6-8 months and tried pretty much everything, until I opted to have it drained surgically, which worked. I was 19 back then. Otherwise I was pretty much feeling fine, some diarrhia, but no other symptoms, after the drainage the fissure dried up... It's still there 14 years later, but not noticeable. I hope it will dry up for you as well soon. I remember how much this really hurts and bothers one.

Fast forward another few weeks and I ended up having a CT scan which showed some definite inflammation and ulcers around my small bowel. I finally got referred to a GI and she set me up for all the tests and scopes needed to diagnose me. Had the scope last week and it turns out it’s definitely crohns. It’s weird because aside from the diarrhea, I have not had any other symptoms. No abdomen pain like I know so many others experience. Oh—and the surgery wound is still not fully healed, I’d say it’s probably about 60% healed.
After the scope last week, she recommended I start on 40mg’s of prednisone for the next couple months until another medication (Imuran) kicked in. At the time it was a shock, and I was likely still somewhat impaired from the drugs that I had been administered during the procedure. I ended up telling her that I needed time to think it over, as I know there are some horrible side effects that can come from steroids. While I’m not in need of surgery, I did have some narrowing in the opening to my small bowel. I guess the worry is that without taking care of the inflammation, a blockage can occur.
That is also similar to my situation. I had a CT and a colonoscopy which both showed some inflammation (but no narrowing in the smaller intestine). I was put on corticosteroids and Pentasa... Initally my reaction was the same as yours, I said I needed to think things over... But that period of thinking things over took a long time. i was on Pentasa for the next 3 1/2 years and my GI asked me how things are, I generally said fine, although things got gradually worse.

I guess I have a few questions for those of you reading: What’s the deal with Imuran not kicking in till 3 months? Is waiting the three months a bad idea? Will the Imuran do the same thing in three months’ time that the prednisone will do? Any advice is welcome!
Imuran (azathioprine) is an immune system suppressive drug. It was originally developped for people who got organ transplants and doctors need to avoid an adverse immune system reaction. For Crohn's aza is given at a lower dosage, just so much (2-2.5mg per kg bodyweight is the standard) so your white blood cell count is lowered to the lower range. That means inflammation is less likely to occur as an irritation of your intestine (for whatever reason) needs to be more powerful than without aza. It takes up to 3 months to work, because aza needs to gradually build up in your system and also gradually reduce the overall white blood cell concentration.

Azathioprine can not do what prednisone does. Pred is a corticosteroid which directly suppresses inflammation at the tissue level (that is why cortisone also helps to allergies or other inflammation as a cream on your skin). The problem with pred and other corticosteroids is they have quite some side effects and are not made for long term usage (they can severely thin out tissue). Azathioprine does not induce remission (get rid of your inflammation), after all if you already have inflammation your immune system is already overreacting. But it does help long term over years to keep you in remission.

Having said all that, if you look around this forum and the internet, really the standard for any person with Crohn's these days is a biologic drug like Humira. It is statistically more effective than azathioprine. Both Humira and aza have side effects and it is debatable which has more... I for one do not take Humira, but that is because I originally started aza back in 2003, at that time remicade was around (Humira not) and was only provided to severe Crohn's. Aza works for me, so no need to change it.

Anyway, to sum up, I would just read up a lot on here to make up your mind. Drugs are also not the only thing to look at when managing Crohn's. The good thing is you can manage it to a point that you live pretty much a normal life, probably an even much healthier life than lots of other people!

I hope this helps a bit as a start.
 

my little penguin

Moderator
Staff member
Welcome
It's very scary in the beginning.
Especially if you focus on the Possible side effects of the meds.
Most meds we take day and out Tylenol etc have very bad possible side effects even death organ failure etc.... But you don't have the doc telling you about the possible side effects.
The possible effects of untreated crohn's or under treated crohn's can be deadly.

Most docs will prescribe a drug when the benefits outweigh the risks.

DS was dx at 7 and is now 10..

He is currently on humira and methotrexate ( similar to Imuran).
No real side effects so far .
The right drug makes things go back to normal as much as possible .

Pred is a drug we all love to hate .
It works fast gets rid of the inflammation -to get your gut healthy quickly.
The humira will keep it there .
The longer you wait the more potential for further damage.
If the sores and inflammation was on the outside very few people would avoid treatment .
Try googling images of colons removed from crohn's patients .

It made the decision to give DS the scary drugs much easier.

Good luck
 
Thank-you to all who responded! Really appreciate all the support and advice. I think I was under the wrong impression of how imuran worked. I assumed it was also an anti-inflammatory, but it seems to be more of an anti-rejection more than anything that it keeps you in remission once you get there (like alex_chris said).

I guess it's inevitable that I will have a rough few months ahead. I know its for the better, but the side effects are always a concern. I'm going to be starting the pred in about 3 weeks time (i'm waiting until i'm on imuran to start it). Hopefully I can suppress any further damage by diet management. I've just picked up a book called 'Breaking the Viscous Cycle' that details the selective carbohydrate diet (SCD). I'm going to give it a try and see how I feel.

I guess the weirdest thing in all of this is how well I feel. Like I previously mentioned, my only symptom is the diarrhoea. No pain, no bloating.

Does anyone know how they decide to take you off prednisone? do they monitor the inflammation and start to tapper once its under control?
 
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