Advice Needed! .. MRI Result, Azathioprine and Elective Surgery

[xSophiexx]

So this may be a little lengthy... Soz in advance....

I was diagnosed CD in May, Severe Ileitis affecting at least 20cm of the Terminal Ileum
Initially started on 40mg Prednisolone, started to taper as per doctors instructions even though Prednisolone has never really managed to fully control my symptoms as I didn't really understand about Pred etc, as such as soon as went back to the GI was put back up to 40mg again this didn't really control the symptoms and as soon as started to taper I got alot of blood etc and ended up being admitted to hospital and put on a Hydrocortisone drip for 5days, when I was discharged I was put on 60mg Prednisolone, 2g Pentasa and 25mg Azathioprine with a view to increase the Aza dosage after 3weeks.
Stopped taking Pentasa as was just going straight through me, saw the GI again who advised to stop the Pentase, increase Aza to 150mg and start to reduce Prednisolone ASAP due the sides i've had (literally every horrible side you could ask for the GI has said hes never seen anyone affected quite like me before me and Pred have a very volatile relationship and I cannot wait for it to be over with) and if the symptoms start to worsen AGAIN he will "make up the difference" with Budesinde (Sp.) he also prescribed Movicol if i get C and Buscopan to help with pain.
Sooo....
Started the 150mg Aza dose and OMG made me sick as a dog, literally wanted to die I was violently vomiting within an hour of taking it so was advised to take a week off of it then start again at 50mg which I have done and seem to be able to keep it down, makes me nauseous still though yuck

And In the mean time I had an MRI scan, now here is where I need the advice...

This is what my GI wrote to me, the MRI "essentially confirms the findings of the colonoscopy. It appears to show a 10cm abnormal segment at the end of your small bowel (terminal ileum) consistent with Crohn's disease. No other areas in the small or large bowel appear affected and this is reassuring. I think it would be sensible for you to continue your current treatment regime as we discussed in clinic which is the higher dose of Azathioprine along with the Movicol and Buscopan and we can discuss further on the 24th September"

SO... after 4months of varying doses of Pred (Mainly between 40-60mg) a Steroid drip and literally eating nothing exciting there is STILL an abnormal segment in the same area - granted it appears to be 10cm rather than 20cm. Is this normal or is this taking a LONG time and not really getting anywhere????
Doc suggested that Infliximab may be the way to go if Azathioprine isn't working / isn't tolerated - ummm if I can't take the full dose then how is it going to work?!?!?
I've got a feeling that this stubborn 10cm has just been poorly for too long and won't get better, I am apprehensive of surgery but sort of at the stage where I want to tell the doc to slice and dice!!

Any opinions , suggestions or general comments lol?!?!:sign0085::sign0085::sign0085:

 

[xSophiexx]

Forgot to add general symptoms in the above -
I have constant pain in lower right quadrant and flank
Flit back and forth between C for a few days then days of Severe D
Mouth sores and ulcers
Joint pain

 

[Carrie]

Is there any way they can verify whether it is inflammation or scar tissue? If it's scar tissue, then nothing you throw at it will work, but if it is inflammation there certainly is a chance that a biologic treatment could help.

From my experience, surgery provided almost instant relief every time (I've had three surgeries). But I'd also be hesitant to rush into surgery with inflammation as there is a chance that the disease could come back a lot more quickly if not controlled from the outset.

Perhaps you could give the Inflixamib a chance and agree with your gastro at the outset a time to review the treatment to see if it's making a difference. In the meantime, have your gastro arrange an appointment with the surgeon so you can feel prepared in case you decide to go down the surgery route in the end.

This disease is never easy to figure out, but I hope you and your consultant can come up with a reasonable solution!

 

[Terriernut]

Well...you've been a nice rollercoaster there. No fun!

I know from earlier postings of yours, you arent too happy with the care you've received. And I can see why. What is the blood work showing for you on the Azathioprine? Is it at theraputic levels? People do split the dose or take it at night as well if it causes too much trouble, that may be a good idea for you. But Aza (and 6MP) can take quite a long time to work and get the right level.

Also 10cm is still quite a bit of inflammation! Especially since you've been on pred for so long!

Only you can decide if it's time to slice and dice. Resections arent always a walk in the park. But I can certainly understand why you would to undergo surgery at this point! That much inflammation for that long can cause alot of scar tissue as well. So even after you get under control, you can still have issues with that. But you have to weigh up what will happen without your TI. Vitamin B12 injections will become a must for you for life for one. Have a long nose around the forum about removal of the TI. I personally still have mine, so I cant give you personal experience about it. (My crohns is large bowel..at present and hopefully always just there)
:kiss:

 

[xSophiexx]

Thanks for the replies Carrie and Terriernut !!

I saw my GI on Monday and he told me that the 10cm is "An area of thickened bowel caused by inflammation".
He started to say that we would stick with the Aza and Pred combo and try and get me up to the 150mg I should be on (as 50mg probably not doing alot due to my TPMT levels) but I argued that this isn't going to do alot as been on the Pred for all this time etc etc so he agreed to get the ball rolling on the Infliximab which i'm pleased with as it's all well and good he keeps suggesting staying on Pred etc but it's me that's suffering!!

So the plan of action is to take 100mg of Aza for 2 weeks if i'm okay with that then to try up it to 150mg again as we suspect it was the sudden increase from 25mg to 150mg that made me so sick.. So far at 100mg im okay just tired.. and weaning off the Pred still but slow the reducing down to 2.5mg in stead of 5mg a week so as to give the Aza time to work. And await a letter in regards to starting Infliximab.

HOWEVERRRR what scared me was he said the Infliximab will either make me Asymptomatic OR it will cause more Scar Tissue which will cause a complete blockage and I will need an operation HUH?!! Didn't really want to hear that! Is this likely?? I'm quite scared about the Infliximab tbh think i've turned into a bit of a scaredy cat when it comes to this hospital.. they're not very good lol.

Thanks again any inout greatly appreciated as ever xx

 

[emmaaaargh]

From what I've heard (bearing in mind that I chose not to have Infliximab at all, so I might not be the best source!) it's possible that the infliximab can heal the inflammation so fast there is significant scar tissue, and yes that kind of thing will require surgery. But for many it's unnecessary and they just heal up a bit better!
Hope it helped you even just a little

 

[Terriernut]

Yes, it is true that Remicade can cause that problem. Sometimes you just need to take the chance! You need to get well, so give it a shot is my advice.
:hang: