Whats next !!

[nannie]

Hello everyone i new to this blog:I am 45 and have crohn's till 2009 i was doing ok , the odd couple of days sick few stays in hospital but mostly good. Then it went pear shaped . Iv had all the drugs [asacol ,loperamide, measlazine buscpan which are all no rubbish like taking sweets then iv had omepazole , azathiopine.mp6,infiximab ] some with really bad side effects between having scans ,x rays ,endoscope and all the other invasive procedures we all had in injure.
:sign0085: In 2010 i was admitted to hospital after a really bad spell the steroids stopped working and i was suffering from dehydration after more tests my Dr told me he couldn't do any more for me medically so they stabilized me then two weeks later i was moved to a different hospital where i had a colostomy at first i felt really well but when i started to ween off prednisolone that when i started feeling really ill my stoma keeps bleeding i have abscess around stoma rectal bleeding ulcers in mouth very tired i feel i have lost my dignity as well as my health the stoma leaks continually so even on a day where my pain is manageable i cant go out alone because of leaking and when i do go out with my partner i have to take spare clothes since having op i have had humira which hasn't worked either i am now on list for more surgery the have removed 80% of large bowel now they want to take 60cm more and stitch my bottom up in the meantime i have to go on modulen ibd till my surgery not looking forward to that i don't want be mutilated anymore any one know of another way

HELP

 

[marti]

Welcome aboard glad you have found this board its awesome and lots of friendly people

 

[David]

Hi nannie and welcome,

My gosh, I'm so sorry you've been having to go through so much. You poor thing

*hugs*

Out of curiosity, are you feeling any better with the Modulen IBD?

Is your Crohn's Disease only in your large bowel or is it in your small intestine as well?

The only other thing I can think of is stem cell therapy though I'm not sure if you would be eligible.

Throughout all of this, have they tested you for c.diff?

And have they tested your various vitamin and mineral levels such as B12, folate, B6, B2, magnesium, potassium, etc?

Again, welcome!

 

[Keepingfaith]

Welcome to the forum! It's a great place to ask questions/vent/or just even talk to someone who understands.

Out of curiosity, have you tried Cimzia or something like Imuran/6MP/Methotrexate in combo with Humira or Cimzia? It's a biologic like Infliximab. I doubt very seriously they can prevent you from hving your upcoming surgery but that's something to look into post-op. I think you would be a good candidate for clinical trials like David mentioned.

I'm sorry the stoma AND the Crohn's keeps giving you complication after complication. Quite a few members have had a total colectomy/stoma issues so the stoma subforum might help you get some support or some questions answered.

Take care!

 

[nannie]

Thanks everyone for your kind words and support :ghug: It's nice to know i am not alone copping with this horrid disease in answer your question modulen ibd i am due start it this week :confused2: has anybody else had modulen ibd can you please share your experience . Is it hard to stick to ?
What it taste like ? Do you get any relief ? :kiss:

 

[Angrybird]

Hi Nannie :bigwave: I have been on Modulen and for me it was the best tasting liquid 'stuff' the hospital has ever given me. Not sure what you have been told so far but I was given a cool bag with a shaker and then you have the tins with the powdered formula, you add this to steralised water and then shake it together. You should be given a choice of flavourings that you can add to make it more tolerable, I chose banana and strawberry and whilst you can have this at room temperature I used to put it in the fridge so it then actually tasted like a milkshake. I must admit I never dared to taste it without the flavourings.

I was started on 4 shakes a day and then the next day up to 6 and then on 8 a day. This was leading up to my op as well. I would say that after 2 weeks I was struggling to drink that much liquid so was only managing 5/6 shakes a day - my appetite totally disappeared so I didn't even want food by this stage - and was losing weight so the dietician was trying to get me to drink 10 a day to keep up my calorie intake but this just didn't happen.

Overall I found a bit of relief but not much, my GI surgeon did confirm that the stricture they removed was nearly fully closed so I am not surprised that I still had a lot of pain.

I am sorry to see that you are having to put up with so much at the moment and really hope that the surgery can improve things for you.

AB
xx

 

[nannie]

Hey Angrybird thanks for info and best wishes i hope you feel better sending you a big hug thanks again nannie xxx