UC to Chron's???

I was originally diagnosed with Ulcerative Colitis in 1982 and had my surgery (large intestine removed and had a J pouch constructed) in 1988.  I didn't get better, had bleeding and pain, and stayed anemic.  Since my gastroenterologist was now able to look at my small intestine and biopsy some of the ulcerated areas there, she was able to diagnose me with Crohn's Disease as well.  She did tell me that the pathology for the two diseases was somewhat different and that in most likelihood I actually did have both diseases.  I understand about the obstructions your son is experiencing.  I have dealt with them quite a few times myself.  I was on Remicade for over 10 years and have recently been switched to Entivyo infusions which are helping.  I have had no side effects from either drug, but the Remicade had just stopped working.  The Entivyo seems to be working to hold the Crohn's at bay, but I have strictures in my small intestine which have to be dilated about every three months.  I am now almost 63 years old and have lived with this disease for what seems to be most of my life.  I have two children and two beautiful grandchildren and a wonderful husband.  Please tell your son to not give up hope.  You might consider (if you haven't already done so) taking your son to a place like the Mayo Clinic or the Cleveland Clinic for their opinion on his case.  I had my surgery at MCV (Medical College of Virginia), but I was sent to the Cleveland Clinic for a second opinion on the Crohn's Disease.  Larger teaching schools seem to be more up-to-date on newer treatments for these diseases.  My prayers will be with your son and you as you navigate these tricky waters of these digestive diseases.

my diagnosis morphed but over a much longer time horizon. the real problem this poses now is that with a crohns diagnosis they will probably be reluctant to takedown the jpouch. the two are so similar that in some cases they infamously call it indeterminate colitis, if the disease is only exhibited in the colon, but once one begins to have signs of disease activity elsewhere regardless of any prior dx, the dx should be converted to crohns because by definition UC can only occur in the colon.

troubling yes. upsetting yes. throw you for a loop yes.

I myself was in denial for the first year, tried to tell my doc, no no no, its just bad pouchitis, I will get better. punted going on Remicade for that year, a year which if I could take back I would. that delay allowed crohns to take a deeper hold and stricture my pouch, which I now have to fight to manage.

what I try to tell people is that in the end it doesn't matter what it is, best to simply treat it with the best medications you can so that it doesn't run rampant over what remains of your body.

again I can understand how frustrated, how flustered how disappointed you might be. I'm sorry.

Helen C. posted:

I was originally diagnosed with Ulcerative Colitis in 1982 and had my surgery (large intestine removed and had a J pouch constructed) in 1988.  I didn't get better, had bleeding and pain, and stayed anemic.  Since my gastroenterologist was now able to look at my small intestine and biopsy some of the ulcerated areas there, she was able to diagnose me with Crohn's Disease as well.  She did tell me that the pathology for the two diseases was somewhat different and that in most likelihood I actually did have both diseases.  I understand about the obstructions your son is experiencing.  I have dealt with them quite a few times myself.  I was on Remicade for over 10 years and have recently been switched to Entivyo infusions which are helping.  I have had no side effects from either drug, but the Remicade had just stopped working.  The Entivyo seems to be working to hold the Crohn's at bay, but I have strictures in my small intestine which have to be dilated about every three months.  I am now almost 63 years old and have lived with this disease for what seems to be most of my life.  I have two children and two beautiful grandchildren and a wonderful husband.  Please tell your son to not give up hope.  You might consider (if you haven't already done so) taking your son to a place like the Mayo Clinic or the Cleveland Clinic for their opinion on his case.  I had my surgery at MCV (Medical College of Virginia), but I was sent to the Cleveland Clinic for a second opinion on the Crohn's Disease.  Larger teaching schools seem to be more up-to-date on newer treatments for these diseases.  My prayers will be with your son and you as you navigate these tricky waters of these digestive disease.

Thank you Helen. I went to the Cleveland Clinic but my insurance would only cover the Dr. They would pay only 25% of the hospital bill. I have been trying to get him on disability but was denied 2X so now I have a lawyer. I was trying to wait for this so I could go to the Cleveland Clinic for the surgery but with the 3rd small bowel obstruction in 3 weeks we didn't have a choice. I know they are much more advanced. And the sad part about this is that I work for a hospital and I am held hostage to use their facilities only.

Dee, I had to go on disability due to my health issues.  It took a lawyer to get me approved, but it is worth the time and effort to do so.  Make sure you get a lawyer who specializes in disability cases.  He will know how to navigate the system.  I will warn you that it is a slow process.  My advice is to make copies of all the forms the lawyer or Social Security will send you (once you have completed them) before you send them in.  I found that I had to complete the same forms over and over during the process.  It just made it easier to have the previous information there to copy.  Your son might have to meet with a doctor from Social Security to review his case (I did).   After all of the steps are completed and the hoops are jumped through, a date will be set for a hearing for your son's case.   A judge will review the case prior to this hearing.  If all of the documentation in place and your son's doctors have worked with you and the lawyer to determine how severe is illness is, your son may not have to go for a hearing.  The judge may just rule in his favor. This is what happened in my case.   It seems the Social Security Administration doesn't think you are serious until you get a lawyer involved.  They tend to deny the claims anyone who tries to complete the process without a lawyer (at least that is the way it is around where I live).  Don't get discouraged if your son is turned down, just keep appealing.   The key is to stay positive.  After approval, it takes two years for Medicare benefits to go into effect, but this goes back to the date he first applied for disability.   It could be possible since he is only 22 and is unable to work that he will qualify for Medicaid.  I am not familiar with it, but it is for low income individuals and there may not be a waiting period for its benefits to start.  Your lawyer or a Social Security representative might be able to help you with all of this.  Good luck to you and your son.  I am truly sorry that he is having to go through this.  It has to be hard on you as well for the last thing we want is for our children to have to suffer.  I hope some of this information is helpful.  Please contact me anytime if I can offer any advice or encouragement.

In my opinion the diagnosis is irrelevant, what is important is treatment to bring these symptoms under control.  There are more inflammatory bowel diseases and forms than there are categories for them, and frankly they are all treated somewhat similarly.  Patients either respond to the treatment or not and if not more aggressive treatments are used, like biologics.

I was diagnosed with UC at age 9 and later Crohn's Disease, and numerous subsequent tests were inconclusive.  I am now almost 53 years old and 4 bowel surgeries later I am still surviving, 24 years with J Pouch despite an operative CD diagnosis and inflammation in my ileum currently. We are treating it as if it is CD but I have had 3 inconclusive diagnostic tests, lots of time and energy and money wasted there. What is important is that you treat whatever he has.  He has what he has, if he already has a J pouch, it will not matter now what the diagnosis is, and it sounds like his colon had to come out anyway, as did mine. There are many people with treatable Crohn's Disease who live completely normal lives with occasional flares, but your son is manifesting virulent symptoms and they need to be brought under control.  Have biologics been attempted? Ileostomy could still be an option, regardless, if treatment doesn't bring things under control. Good luck-

I was diagnosed with UC in 2003/2004 with ileostomy and then j pouch surgery.  In 2013 started getting sick again and now crohns.  Since then I've had a permanent ileostomy created at  Cleveland clinic.  My j pouch is still in there but has crohns and they want to take it out.  I'm scared to take it out tho.   it sounds like uc to crohns later is common from all my research.