New here

[Ckt]

Hi all!i am new to this site. I have been diagnosed with crohns disease since 2000, thought to have bad it since 1983 undiagnosed. I have had ten abdominal surgeries with 6 of those bowel resections. I seem to habe it mostly in my ileum and have several bowel obstructions. I am currently on humira and endocort and feel I am still flaring although I have never had abnormal labs and right now my cat scan only showed constipation..puzzling. The only time I get constipation is when I have an obstruction or I have a partial obstruction and it hasn't completed itself all the way. I am feeling particularly frustrated at the moment. I feel that although my gi of 8 years is very kind and compassionate and certainly educated on IBD,I am sensing she's about at the end of her rope with me.i am going to another gi at a really good center five hours away but not until September 27. I don't know what to do..I can only keep water in and just started vomiting):
Not feeling up to a long history..this is probably long enough!thanks and any advice would be appreciated! Ckt

 

[sparkles]

welcome to the site!
oh gosh youve had crohns for ages!! im sorry to hear of all that you went through, crohns can be so annoying!!
your story was actually much shorter than most, feel free to go into detail, everyone on this site is super helpful and encouraging
good luck with everything

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you are still having problems. With regards to the cat scan what area did it focus on, I am just wondering if you may be having a problem higher up in the GI tract? Also was this the only test other than bloods wt have been done recently? Have you informed your doc about the vomiting?

Will leave the questions at that for now hun.

AB
xx

 

[Ckt]

Thanks for your replies..they did a cat scan but my left side was full. So they said it was constipation and the rampant diarrhea was overflow. I'm getting Iv fluids at the doctors in a few minutes which should help. I'm not sure what's going on to be honest. I have these symptoms before I get an obstruction but I guess it could be motility problems. I'm hoping to limp along until next month when I go to another Gi for a second opinion which my current gi doctor agrees will help shed light on the matter. I'm really fortunate that my current gi doctor is so willing to look st all things although I do feel there's something being missed. I want to work again and be involved in social things which I just can't do right now..that frustrates me and gets me down!i also see where I don't have any formed stools..it's just bile and undigested food..where else can I talk about this? thanks a bunch

 

[David]

Hi Ckt and welcome to the community. With all those resections and your current symptoms, are you taking any vitamins and minerals? Do you get your various levels checked such as B12, folate, vitamin D, and magnesium to name some?

If you are indeed deficient, proper supplementation can make a HUGE difference.

 

[Ckt]

Thanks...yes,I get all those checked and am taking B12 injections,vitamin D,magnesium,fish oil,and regular iron infusions.

 

[Thermo]

Sorry to hear about you having such a struggle I know it's terrible. From what you are saying it sounds like your GI has taken care of you over the years. My advice would be a complete over haul, if you are still having all of these problems you need some major intervention quickly. I would recommend switching prednisone for the Enticort and getting on a 6mp along with your Humira. I am sure someone along the way has mentioned that you stand a very high risk of short gut syndrome the more resections you have so you need to try and get the symptoms under control with medications, don't be afraid to throw medications at it, at this point you need them. Keep us updated, good luck!