Duodenum

[Sophabulous]

Hi,

Is anyone here affected in the Duodenum? I also have severe activity in the terminal ileum but have no symptoms there at all. All my woes are Duodenal related [emoji31]

Basically I was diagnosed in April, although had symptoms for years before that. I've had steroids, pentasa, the liquid diet for 6 weeks (now on partial liquid diet), and I started azathioprine 2 weeks ago. I also take esomeprazole 40mg every day, which has improved things a little but still suffering.

Can anyone out there reassure me that one day I will be able to eat without having horrendous reflux/heartburn/feeling full within a few mouthfuls and eventually vomiting if I persist in trying to eat?

Losing the will to live!!

TIA


Soph

 

[ronroush7]

Welcome. I don't know but you may have to be on some combination of biologic along with the azathioprine. Ask your doctor . Once you are on the right mixture of medicines you can reach remission. Everyone is in support of you.

 

[shamrock15]

What Ron said!

Seriously though, he is right. There is unfortunately a dance to get to the point of biologics though. Aza can take months before it is fully effective.

I have lost part of my duodenum. As long as you don't have significant scarring you do stand a very good chance of going to remission and leading exactly the life you wish. Good luck!

 

[Sophabulous]

Thank you both, very encouraging! I was having a bit of a wobble there [emoji31]

Ideally I would have stayed on the liquid diet a while longer but I'm going to Italy next month and my dietitian agreed that you can't go somewhere like that and not eat! I've been re-introducing food since Thursday alongside 3 servings of ensure plus per day and suffice to say it isn't going well so far!

I wasn't aware that Biologics could be used in conjunction with Azathioprine so that's good to know. I think part of the problem is the hospital I'm at is severely understaffed in the gastro department so you wait a long time to get on a treatment. By the time I was given Pentasa I had been off steroids and having symptoms again for weeks. That stuff made me really ill and I had to wait another 2 months for an appointment on no maintenance treatment so things were just as bad as they were pre-steroids although my anaemia and B12 deficiency was being managed by my GP so that made a big difference.

I don't really know about the extent of the damage to be honest. Last June it was horrendous and completely inflamed and multiple ulcers. Unfortunately this was misdiagnosed as H Pylori and it was March this year before Crohn's was even on the table. I had another scope in Feb where they took biopsies and although the ulcers had cleared up thanks to esomeprazole, it was still severely inflamed. Since the merry song and dance that's gone on since then I honestly don't know what state it's in now.....

[emoji24][emoji85]


Soph

 

[shamrock15]

In the mean time, you can take B12 supplements. I use sublingual B12 and it works well.

 

[eleanor_rigby]

Hi, I am affected in the duodenum. My GI isn't 100% certain whether it is Crohn's or coeliac disease causing my inflammation there at the moment. I have read that duodenum Crohn's improves when you get Crohn's in the ileum under control.

 

[littlemissh]

I have upper GI crohns - stomach, duodenum, jejunum, ileum. It isn't that common but the majority settle with standard immunosuppressants. When mine was bad I had jejunal tube feeding to bypass the duodenum which meant I could have nutrition without the vomiting/pain.
Mine became much better with Humira.

 

[Sophabulous]

Thank you everyone! I'm having b12 injections and it has made a huge difference, as well as the iron supplements I'm taking. It just seems as though from here if I'm still not right the treatment options become increasingly unpleasant so I'm so desperate for this to stick.

Hopefully you're right and when the terminal ileum settles it all will. I'm just getting frustrated with myself as I'm going on the trip of a lifetime to Rome next month and all I want to do is soak it all up, eat Italian food and be on my feet taking in the sights all day. I'm just a bit sad as I know that isn't going to be feasible but it could be much much worse. Thanks for making me realise that