Advice and guidance

[Bill Vasiliadis]

I will try keep this as concise and to the point as possible. I have had Crohn’s disease for about 8 years now. It all started with me seeing my GP due to consistent and increasing abdominal pain coupled with fatigue, which resulted in a blood test showing I was anaemic. This saw me referred to a gastroenterologist where a colonoscopy was arranged. The results confirmed the illness.

My course of treatment since then has been pretty standard. I was first put on steroids to reduce the inflammation which was successful. After this I was put on 6mp and remained on that for a little while. The 6mp did help somewhat, but after a second colonoscopy showed the disease was still quite active it was decided that I was to be put on Remicade in conjunction with the 6mp. This kept things at bay and saw an almost total elimination of pain and a return to regular BM. This treatment plan continued for a few years and a recent ultrasound showed that while there was still some active disease, overall it was quite mild in degree. The disease was most active where the small and large intestine meet, which has always been my problem area.

In truth, I have never been comfortable being on such heavy medication, and as my interest in diet and alternative treatments has heightened I recently decided to stop taking medication all together, in the hopes that I could manage without them. This was about three months ago now. At first, I was fine and did not notice any of the symptoms returning but this was to be short lived. The past month has seen me flare up, and the past few days in particular have been rather agonising. I had planned to see, and in fact have made an appointment with (stupid waiting lists), an integrative doctor but I guess I left it too late as I did not expect the illness to return so quickly.

I saw my GP just yesterday and he told me that my only real option at this stage is to take steroids and then go back on the Remicade. I really, and I repeat, really do not want to do that. My first stint on steroids were terrible and I will do anything to avoid them. I have read about going on all liquid diet and I have been considering this but still am unsure. Strangely enough, the pain hasn’t been all too bad today but I feel that I need to do something soon otherwise I might have no choice but to go on the steroids. So my question is, what are my options at this stage? I have even been considering surgery as I am fairly certain that the bulk of the disease is concentrated in one area as I mentioned above, but am not sure if it is appropriate in my circumstance. I will be seeing my gastro in about a week’s time but feel that I need to start something now. I appreciate any advice and guidance that anyone can offer.

 

[FrozenGirl]

Exclusive enteral nutrition may be an option for you. This is wear you drink only a specially made formula ( usually elemental, so basically pre digested) to help eg the inflammation down. That said it is very hard to do as to see real results you generally have to do at least 6-8 weeks of no food whatsoever.

The other consideration is steroids generally work fast. They have tons of side effects ( trust me I understand I was on prednisone for over 8 months in a row) but they generally start working within a week or two. If you are willing to to consider steroids you mah have options other than prednisone. Entocort might be a good option for you given it is a steroid but isn't as systemically active and so it has less side effects.

Surgery may be an option but it really depends on the extent and location of inflammation. I really don't know much about resection surgery so no advice there.

I'm sure someone else with more knowledge will pop in soon.

 

[Clash]

Agreed you could try an elemental diet, and you would be looking at 6-8 weeks of it.

Depending on location of your disease entocort might be an option and then of course pred.

The problem with surgery is there is that CD often comes back at the surgery site. My son was on Remicade and mtx for a couple of years but the meds just couldn't resolve the area you mentioned, the terminal ileum but more specifically the ileocecal valve. We opted for surgery and all went great but the disease returned at the surgical site within months.

The other issue was that for surgery my son had to stop remicade. When he started back after surgery his body had built up antibodies to the drug causing him to have reactions and making remicade no longer a viable efficacious option for him. He had to move to humira.

Stopping and starting a biologic has a high incidence of antibody production which needs to be considered when one decides to stop treatment with an biologic.

 

[Bill Vasiliadis]

I would really like to give the elemental diet a go but from what I understand, here in Australia, it is not something that is considered a legitimate treatment option for whatever reason. This of course makes it very challenging to receive guidance or support from a professional, meaning that I have to try it on my own. I might just have to bite the bullet and go on a steroid. I wasn't aware that there were other options besides pred so that makes things a little easier.

 

[ronroush7]

If you go back on the Remicade, get yourself tested for antibodies and then consult with your doctor.