Crohns - My Story

Hi Guys

I am so glad I found this forum!!

This is my story (short version)…..

I went out for dinner with some friends to a French restaurant. The next day I had a very bad tummy, I put this down to the mussels I ate. However little did I know what it was the start of a very long journey! It all began, the excruciating cramps, running to the loo, vomiting, loosing weight. After many test doctors suspected Crohns however they could not diagnose me as the biopsy’s taken from the colonoscopy was negative for crohnes, however doctors decided to put me on Pentasa as there was active inflammation. In December 2010 I had an MRI, the results showed active Crohns and now the doctors feel that the can officially diagnose me.
The doctor feels that I should start taking Azathioprine, however I have heard and read negative things about this drug. If anyone on this forum has taken it please can i have your feedback it would be much appreciated. Thanks Anna

Welcome!

Hey there and welcome to the forum!
I remember when I was first going to start taking the Azathioprine (immuran) I was so scared because of what I had read about it, but after all that I had been through I was willing to try anything. I have been on it for about a year now and I have to say it is working great! You don't have anything to worry about and let me know if you have any other questions I can help you out with

Hi Anna,

Welcome to the forum. There are a lot of helpful and supportive people here.

As for the Azathioprine, I wish I could report a positive experience, but it caused pancreatitis even on the low, sliding dose, right from the start. Don't be put off by this as there are many people who take the drug on a regular basis without experiencing significant problems.

Have a read-up on top down approach with regard to drug treatment rather than bottom-up. This basically suggests that the disease is hit hard with big drugs early on and then things are backed-off for maintenance. I would consider that starting with Azathioprine is definately an example of bottom-up.

Hope things improve for you soon.

Mark

Hi there,
Thanks so much for your reply!
I was recently taking Encort, this was for 6 weeks to give me a boost, I felt fantastic, I felt normal for once, however since I have come off them I am back to square 1. Have you ever taken these? Would the Azathioprine have a similar effect as the Encort? I am at the point where i am willing to try anything, i just want to feel better, I’m so tired all the time and all I want to do is sleep, i have no energy at all!! The doctor mention that for the first 6 week of starting the tablet I would have to have a blood test every week, he mentioned this is because it could effect my bone marrow, are you aware of this? He also said that it is a immune suppressant, which worries me, being so ill with Crohns the thought of catching bugs and not being able to flight them off scares me.

No experience of Encort I'm afraid. Yes, I read all about the potential side effects of the Azathioprine and I went ahead with it. Another 6 years down the road and with the knowledge that I now have, I think that I would have challenged if this was the best treatment available. However, being an NHS patient in the UK, you don't exactly have much choice!

A lot of the drugs for Crohn's fall into the category of immuno supressants. Don't worry too much about this. There is a school of thought that Crohn's patients start out immune system that is over active and this is at the root of the problem. The drugs are largely trying to redress the balance so that the body can heal its self. Make sure that you get your flu shots, wash your hands regularly etc. and try to eat well. It no guarantee, you will still get the usual bugs, I certainly do, but at worst the recovery time has just been a couple of days longer than it perhaps is for other.

I've had a bad experience with the post code lottery over treatment availability. It's only since I had my care transferred to one of the major teaching Hospitals in London have they been preparred to fight for the funding for what they consider the right treatment. I'm not sure where you are, but I hope that you don't get caught in this sort of situation as it can take years to resolve.

Mark

Hi Mark,
Thank you so much for the information. I am based in North London and under the care of the Royal Free Hospital. My next appointment is in a few weeks, so i will be able to discuss my concerns further with my consultant, however i am so greatful for your response and will bear what you have said in mind. It really helps to know that there are people out there that can relate to me….

Hi Anna and welcome! I don't have experience with Azathioprine, but I these meds can affect everyone differently. It could be the drug for you, but you won't know until you try! It can take people several attempts to find what treatment works best for you. And though some of the meds can sound scary, it is much worse to let your CD to go untreated. Lots of good information on here and hopefully you'll read how much drugs like Azathioprine can help and put some of your fears to rest.

Hi Jill, thanks for your message, as you know i am new to this, so i am still finding my way around, im sure i will find lots of information on here that will help.

Hi Anna,

Your're not far away then. I'm now treated by the guys at UCLH. Originally sent there after the Surgeons at the local Hospital realised that the Fistula that I have was too complex for them to deal with. Some years later my Gastro care was also transferred there, not because they couldn't deal with it locally, but just because the funding requests were turned down when the local Hospital made them. Of course the local PCT deny that this was the case! The proof exists, but it served little purpose to challenge them after the funding was approved.

It works very well being under the joint care of the teams at UCLH as they have multi-disciplinary meetings between the Surgeons, Gastros, Radiographers and IBD Nurses. If you have to have this disease, then you could be in far worse places.

I really feel for some of the guys from overseas on this site who have to worry so much about if they can afford the cost of their health care. The NHS is far from perfect, but with an on-going, life long condition such as ours it really comes into it's own. I have medical insurance with my job, but unfortunately I've never been able to mix and match treatment between the two. I'd happily share the cost to save the NHS money, but it's not allowed!

Mark

Welcome Anna.....I've not been in imuran, but was on 6-MP instead with no problems.

I am wondering - if entocort worked in the past - why you wouldn't go back on it?

Hi Anna
and welcome fellow Brit

There are many on this forum on Aza, with lots of success stories. Try not to fret about the 'horror stories'
Mark has given you great advice about how the immune system works with Crohn's, and also bear in mind that most meds will have their side effects, if you don't like it, come off it! But gotta give it a shot tho! Unfortunately, I was allergic to it, so I came off it!
I work with little autistic people and hardly ever get bugs n stuff, so it's a matter of keeping vigilant when around colds and sneezes. Flu jab is highly recommended.

I've been on Entocort too, very mild compared to Prednisolone, but it works well in the small bowel and is non systemic, so the side effects are minimal. Have you thought about a course of Pred too?
Have a mooch around the treatment forums, lots of info there about meds
Enjoy the forum
lotsa luv
Joan xxx

Hi Anna and welcome!

I know how you feel about being scared of trying drugs due to side effects. I was terrified of trying Humira! I put it off for about a year. I finally gave it and decided to try it. Unfortunately, it didn't work for me, but I also didn't have any side effects from it. I then tried Methotrexate, which also didn't work for me and I had terrible side effects at first that later went away. Both of these drugs have been very effective for others.

My point is - every drug treats everyone differently in terms of effectiveness and side effects. It's worth a try, IMO, in order to feel better!

Good luck - I hope you find something that works!

- Amy

Hi Guys, thank you so much for all of your responses. I am so happy i found this forum!!
@Pasobuff, the consultant said that with Encort, it can not be long term medication, i think this is because it is a Steriod? I have been on Pentasa 4x500mg twice a day, it has helped alot, however it still effects my day to day life, this is why he recommended Aza!
@Astra101, i was not aware of Prednisolone, i will look around the med forum as suggested, still working my way around the forum, thanks
@ameslousie, you are right every drug differs, thanks for the adivse.
My crohes is of the "ileum" the consultant said 15cms is diseased, he classed it as mild, however this does not feel mild to me?
Has anyone got any advise on herbal remedies that have found help them??

Hi Anna! Welcome to the forum!

Lots of great advice so far. I want to point out that there is an "Imuran Club" thread where many people are talking about their experiences with going on azathioprine. You can talk to other people who are starting it for the first time as well as read about people's success stories who have been taking it for a while now. Here's the link:

http://www.crohnsforum.com/forumdisplay.php?f=64

I also have Crohn's disease in my terminal ileum. When I was first diagnosed a year ago i was considered moderate-severe because I had fistulas, abscesses, strictures, you name it! I was put on Entocort, which helped me immediately, and then they started me on Humira. After a while they had to bump me up to weekly shots AND azathioprine (Imuran), which I've been on for almost a year now. The only side effect I've personally experienced while taking the AZA is heat sensitivity. I just got a scope and CT scan last month and they've downgraded my disease to mild! So, the medications can work! It's worth a try if they make you feel better

Also...the azathioprine will take a while to kick in for the full effects. Usually your doc will put you on something like Entocort for a while and then wean you off after you've been on the aza for a while. Don't be afraid to mention it to your doc if you are still feeling crummy. There's no need to suffer in the meantime, you know?

As far as herbal remedies I've noticed a difference in taking a quality probiotic supplement and krill oil capsules (anti-inflamamtory). There are lots of other supplements people have recommended including turmeric, ginger, herbal teas, etc. Once you get more comfortable with the forum you can search for threads on topics you want to find.

The top left of the site you should see a small link called "Search" where you can find topics that have been posted about.

Hi Anna! no advice form me, thankfully you have already gotten a lot so far. I just wanted to say welcome to the forum!

Hello Anna,
It is nice to have you here and I am so happy so many people are able to give you wonderful advise. I hope you will find yourself helpful enough advise and will have a better understanding of your dilemma.
I personally have been on Azathioprine on/off for the past three years along with constant dosage of Pentasa.
So far with my experience of using the drug, I have had weak hair and iron deficiency. Otherwise my immunity to diseases other than Crohn's, like the flu, is just great; have not had a cold in the past few years when everyone around me did.
However the symptoms of the disease and the effects of the drug vary on person to person.
I really do wish you the best and hope you will have no trouble with taking Imuran, much luck to you. If you have any questions, I am more than happy to help all that I can.


kisses, Aya

Hi Anna,

Welcome, I have been under the care of the Royal Free for just over 20yrs with my Crohns, I started taking Azathioprine about 2yrs ago. I was reluctant at first after reading some general info on the drug but in the time I've been taking it I've had no issues. They will initially monitor your progress regularly with blood tests to make sure you don't have any adverse reactions but after that it's business as usual.

Hope this helps

Alex

Hi all, thank you all so much for the advise!! Just to let you know i was lucky enough to bring my hospital appointment forward and today after much thought I have started the azathioprine, i have also been given another 8 week course of encort until the azathioprine kicks in. So far so good....i will keep you all in the loop with how i get on!! Thanks again guys xxx