My Crohn's is Spreading!

[hingrum]

I am 26 years old. I have been suffereing from Crohn's disease for 13 years and have been diagnosed for 11 years. At 15 I had my first bowel resection and appendectomy. At 18 I hand my second bowel resection and cholecystecomy (gallbladder removal). Just before I turned 25 I had my third bowel resection.

It has been about a year and a half sine my last surgery. I was not feeling well and went to the doctor and suggested we do a colonoscopy before the end of the year (bc of course I have already met the deductible). There we found that my Crohn's is active. I have ulcers throughout the small bowel. Here is my question.....

How many people have had their Crohn's disease spread to other areas in the digestive tract? The colonoscopy also showed that the disease has spread to the perianal region (if having Crohn's isn't embarrassing enough!) and the ulcers are present there too. I am having bleeding, weight loss, and pain. I am crippled my nausea without a daily regiment of pills.

The spreading of the Crohn's has heightened a new sense of worry and anxiety with the disease. If any one has had this happen
Does it spread more easily, often now that it has spread to another region?
Are you more likely to have a ileostomy? (MY WORST FEAR BTW)
Please share your experience. ale:

 

[Josephine]

Not sure what the answer but good luck. My first intial diagnose was in small intense and how it the Sigmoid and splenic flexaible.

 

[PsychoJane]

Well, the unfortunate truth is that crohn's can affect the digestive tract anywhere from mouth to the anus. At diagnosis my disease was only present in my colon but I also had lots of mouth ulcers. The last flare was affecting my small bowel. It's annoying, needless to say!

 

[LucyCarroll]

Mine cleared up in the intestines and went on to my stomach/esophagus. At first I was really angry because the colonoscpy, aside from some inflammation in the ileum, was clear. Eh, what are you going to do?

 

[JustAYoungLad]

Yeah it's really not nice . I've only had one surgery (currently 3 weeks post op at the moment) but I can't imagine having 3 and then the potential of another. You must be thinking when will this end .

My crohns was only located in one section of my small bowel that's now been removed, so I'm also hoping it doesn't return.

Unfortunately IBD doctor has told me that it can come back and if it does it has a higher likely hood to be at the resection site. Got to try to keep healthy and not let emotions get too built up. I found stress and upset manifest as inflammation and just makes the situation worse.

 

[hingrum]

Thank you everyone! I go see my doctor on Tuesday for a follow up. I am supposed to start a new TNF Blocker, Cimzia. I have been on Remicade and Humira before. He also prescribed a antibiotic called xiafan and pain killers. He said perianal crohn's can be hard to treat.

 

[Ki3]

When I was diagnosed in January it was all in my ileum and it stayed there until very recently, I still have it in my ileum but it has also affected me very high up by my throat and around that area. I thought I was just having indigestion but an MRI showed inflammation.

 

[Terry]

Hi, I too have crohns I was diagnosed 25 years ago now. I am currently waiting to have my 1st bowel resection in the next month I hope. I have a lot of damage in the ileum area, and yes I have also had it spread to my duodenum and also my esophagus very painful in these areas. I hope the new drugs help get you sorted out quickly. Best of luck to you. Theresa.

 

[Crohn's gal since 1989]

My Crohn's started in the TI, but now I also have it in the duodenum. My GI said that if the duodenal Crohn's is active it protects the TI. Meaning if duodenal is flaring TI isn't. However if TI is flaring, it does not protect duodenal and I could get a double flare up.

 

[Crohn's gal since 1989]

My Crohn's started in the TI, but now I also have it in the duodenum. My GI said that if the duodenal Crohn's is active it protects the TI. Meaning if duodenal is flaring TI isn't. However if TI is flaring, it does not protect duodenal and I could get a double flare up.