Advice about what option to go for with treatment??

[fi-ecosse]

Hi Everybody, Im going to try and keep this as short as possible, if that is possible? I was diagnosed with Crohns Dec 2013, 8cms affected at ileum.
Consultant put me on pentasa and budesonide and eventually after not feeling too great I was eventually put onto Azathioprine Mar2014. I spent most of last year just feeling exhausted, lethargy and continued pain under my ribs on right hand side. Eventually my dose for Aza was increased to 150mg and after a follow up consultation I was asked to redo a calprotectin test as inflammation had come back on another test. Consultant was considering biologics at which stage i decided to get a 2nd opinion with a gastro who specialised in Crohns and is supposed to be "the man" to see. Fast forward to Feb 2015 and he checked my notes and said that recent blood tests showed my therapeutic level for the Aza was very low so effectively ive spent the last 11 months getting no benefit of taking drug. So his option was to get me on Modulen to try and get me into remission which seemed great however I disappointingly one lasted a day and half. I just couldn't tolerate the taste. So im now in the following position:

Increased my Aza to 200mg for 6 weeks, if I havent improved and Im still feeling lethargy, bowel movements etc the option looks like Biologics (Not keen) or a limited Illeal resection.

Im really at a loss to be honest, Ive went from being extremely active mother of two kids, working , naval reservist to a mum of two kids and trying to continue life as normal but I think my body has had enough and is telling me I cant train and do as much etc. Since start of year I have had 4 viral infections one being gastric and 5 days in hospital.

So i need help? Who can advise on the above, the consultant did give option of Modulen via Gastric tube but to be honest I dont like idea of putting tube in and out, is it an option to leave a tube in for the 8 weeks? Im lucky to have localised inflammation do I consider surgery which Gastro thinks might not be a bad idea?


Any advice appreciated ..

 

[24601]

Well there are other formulas that you can try other than Modulen like Fortisip (I think that tastes a bit better) or Elemental 028 Extra (honestly for most people that's worse but we're all different).

Did you add any flavor to the Modulen? Or try it chilled or at room temperature?

I've done an NG tube and certainly people do leave it down - maybe not for the whole 8 weeks but there's no reason that you couldn't go back to the hopsital and have someone reinsert it if it needs changing.

I used to insert my own - I just preferred the feeling of being in control. I was feeding for about 20 hours a day (I had an intussusception and had to pump very slowly) so I would only take it out about once a week and have a few hours without it.

The big factor there is how you feel about being seen with the tube when you go out. I didn't mind. Most people said nothing and the couple of times I was asked about it a simple explanation sufficed. Pretty much if you act like it's normal then other people will take their cues from you.

It's probably worth giving it a go since neither the increased dose of azathioprine or a biologic will work straight away, so at least you'll know you gave it your best shot to get the inflammation under control quickly.

What are your specific concerns with biologics? Maybe some of the good experiences people have had will reassure you.

With localised inflammation surgery doesn't sound like too bad an idea. I have extensive disease so my concern has always been maintaining enough small bowel but if it is just the 8cm section in the ileum then that is a relatively short length compared with the typical Crohn's resection.

You might still need to consider meds post-op to prevent it coming back though or treating it if it does. Depending on your feelings about surgery vs. meds that may influence whether you'd rather try biologics before surgery, knowing that surgery doesn't make meds unavoidable.

Whatever you decide I hope it gets you into a long remission

 

[shamrock15]

Give the biologics a chance before surgery. They made a world of difference for me, in fact they were the only thing that gave me a shot at remission in 25 years. Surgery isn't a guarantee either, however it does guarantee that you will lose bowels and possibly some absorption that goes with it. As a veteran of 6 surgeries, I would have taken biologics before any of them.

Hope you find something that works.

 

[fi-ecosse]

@24601 .. I tried all the flavourings and had it chilled .. i struggle with shake drinks of any variety and If I could have made it work i would have.

I think in reflection now when I see the options, I think its worth trying a gastric tube before biologics and I want to keep surgery as a last option.

Ive been lucky to have most covered to date on my private medical but now Im at the point where I need to get the treatment pinned down so when I transfer to NHS all is in place..

I think Im at the point where Im exhausted trying to lead the lifestyle I had pre-crohns .. i officially cant keep up, cant train as hard ...

 

[24601]

The reason I asked about the flavorings/temperature was because I actually preferred it unflavored and at room temperature...so basically the opposite of what most will tell you is best! And I liked to make it up at about 1.5 times the normal concentration because I preferred the creamier mouthfeel and had less to drink. But we're all different and if you've tried it every which way then at least you know you've tried.

If you struggle with any drink of that kind then an NG tube does sound like the next step for you. Again I really would try that both ways if need be - having someone insert if for you first if you want to leave it down and if that doesn't go well for whatever reason, then it's worth trying to do it yourself under guidance. I hated having it inserted but found with a few attempts that I could slowly and patiently find a way to feed it through the tight space at the back of my nose and not have it hurt if I did it myself. Now I can do it in a trice without any lubricant, throat numbing spray or even water to sip. I find it a really handy skill because I find it virtually impossible to drink the contrasts for the various scans.

Hopefully when you get the disease better controlled then you will be able to get back to a more normal life. Lots of luck.

 

[Clash]

I would give the ng tube a try. My son would insert his every evening around 6pm and remove it around 7am the next morning. Of course, others had theirs inserted and left for a few weeks before having the nurses change it out. He didn't opt for that because it seemed to time consuming for him. Within, the first week he was inserting with a minute or so and of course removal took no time.

He took his formula all over night and his wasn't exclusive enteral nutrition but supplemental nutrition.
Another Mom here, Tesscorm, has a son that took his formula overnight and his was exclusive.

For pediatric patients it's a good way to get nutrition in their growing bodies, so we are all for it.

 

[fi-ecosse]

@Clash, thanks ... Mine was basically to have complete gut rest as Im now a year diagnosed and because Azathioprine was below theraputic level he wanted to try the option with zero risk. Im gutted I couldnt tolerate what I need to do now is figure out how to get the NGT organised as it isnt covered on my PMI and I need to transfer over to our NHS service. All fun and games.