Community Forum

 Am new to this site although I am "pushing 50" and have had IBS, then UC and now Crohns (as of 2 yrs ago) since I was a child. Figure I have tried everything else I can think of to survive this disease. Whats the saying misery loves company?  Any way my doc says it is extremely rare to have both forms of IBD (like a handful in the world???) Any one else out there have BOTH Crohns and UC?

 Reply posted for pb4.

 I suppose that anything is possible. UC does run pretty deep in my family though. My grandmother, uncle, and at least three other cousins all have pretty extreme cases that have ended up needing surgery. Luckily I'm the only one with crohn's. Also, my surgeon and doctor both seemed pretty convinced that I had UC and that my colon REALLY needed to come out after I had my 4 surgeries. They are both very good at what they do and I tend to trust their opinions.

 Reply posted for ryanleonard.

There is always the possibility of being misdiagnosed with UC and that you actually had CD to begin with...there is the term "crohn's-colitis) which is inflammation of the colon.

Many have been DX with having UC only to have surgery of getting their colons removed and getting sick again or continuing to be sick because of a misDX of CD rather than UC...

It sure is odd that considering how rare it actually is to have BOTH UC and CD so many on here do.

:)

 Reply posted for ryanleonard.

 hi ryan,

sorry to hear of your misery. came on this site regularly when i first joined. was humbled and incredibly grateful after reading so many horror stories. now i rarely log on. am still grateful as i realize how much worse off i could be. emotionally i find it difficult to read about so much suffering. especially when i am powerless to help.

am still on the asacol but the pain is 1000 x better since starting treatment with a homeopath in january. so much so that i almost feel guilty complaining when i do hurt. i cant tolerate steriods and as for remicade and that class of drugs, i dont even want to "go" there.

i think we all have to find our own way through the h*ll that is ibd. all you can do is follow your gut (no pun intended). will keep you in my prayers. wont be hard to remember you as my son and step-son are both named ryan.

take care. gammy

 Reply posted for ryleys gammy.

Me too. This is the first place I've actually heard of anyone else that has both. It makes me feel a little better in a weird sort of way. I was diagnosed with UC when I was 19. A couple of years later I had to have 4 surgeries to remove my colon and create a j-pouch. This worked well for about a year until I got sick again. After about a year of misdiagnosis, lots of different meds and a change of doctor, I was diagnosed with Crohn's as well. That was a couple of years ago. I'm 30 now and I'm still trying to get the right combo of drugs and lifestyle. Seems like any given treatment only is effective for so long. I'm on remicade now and it seems promising. 

 Reply posted for yellie25.

This is from the "ask the doctor" via the CCFC...

Colitis or Crohn’s?

DEAR DOCTOR: I was first diagnosed with ulcerative colitis, and four years ago my colon was removed. The diagnosis was changed to Crohn’s disease because surgery revealed that more than one layer of bowel tissue was affected. All my other symptoms were related to colitis, not Crohn’s. Is it possible for colitis to worsen and attack deeper tissue layers? Does that alone change the diagnosis from colitis to Crohn’s? Is this common?

DEAR CCFC MEMBER: I always try to educate patients on the difference between ulcerative colitis and Crohn’s disease. Ulcerative colitis only affects the colon; Crohn’s disease can affect any portion of the gastrointestinal tract including just the colon – which it does in 25 per cent of cases. Therefore “colitis” can be ulcerative colitis or Crohn’s disease (Crohn’s colitis) and the symptoms are
indistinguishable.

An experienced physician can usually tell the difference between the two. But in 5-10% of IBD cases, there is no clear distinction (so called indeterminate colitis). The true nature of the disease is apparent only at surgery, when the larger specimen is available to the pathologist (the doctor who examines the surgical specimen). Once again, an experienced pathologist can tell the difference, especially in surgical specimens. From your description, it sounds like the pathologist is seeing transmural inflammation, raising the question of Crohn’s disease.

 Reply posted for ryleys gammy.

I have both too! It has been very tough to treat since I have both and I did not respond to any drugs for 6 years. I am now on Remicade and it seems to be working for now! I was originally diagnosed with UC for years then they discovered I had Crohns too.....lucky me! I have not needed surgery but I am hospitalized every three or four months for IV medication and usually go home with a PICC line to take my meds. The worst  part is that I have two small children and I hate not being healthy for them. I have heard it is rare to have both.....I guess we are just lucky!

Hang in there

 Reply posted for usfdancer.

I know exactly what you mean...I was diagnosed in feb, and I have both...jdpinkmom...

 Reply posted for roneth1974.

 hello again,

u have been on my mind a lot lately. hope u are feeling better, even if for a day. seems i might have started an argument with my question.  sorry about that.  was just curious how RARE, rare really is since my doc was freaked out that i have both diseases. cant seem to find any real statistics on the matter.

have actually been feeling better for the past wk or so. have gotten serious about taking supplements again (bs, fish oil and the like) and have had a lot more energy. figured it couldnt hurt the exhaustion was sooo bad I was desperate. got 5 grandkids i need to play with while they still think i am cool.

God Bless.

 Reply posted for usfdancer.

  hi "dancer",

so pretty and young to be so sick. I am sorry. this stuff really sucks doesn't it? gotta say that after reading so many sad stories i feel fortunate despite having both diseases. this site was just what i needed to stop feeling so sorry for myself. I am humbled by other's suffering.

hope u are soon feeling better. i have found some new treatments that work for me through homepathy. just wish i had found them sooner.  the experience is so different yet similar for all of us. as far as being embarrassed I know what u mean. I first realized I was ill when i was 8 yrs old. I didn't tell my family until I was grown and living on my own. Now I rarely have a conversation that someone doesn't  bring up some kind of bodily function. lol  This disease is much easier to handle when u have a good sense of humor.

Most people will never truly understand how this disease robs you of your dreams. I barely remember the person I dreamed of being as a child. Somewhere along the line I was so busy trying to survive this disease I forgot who I was. Now I am an old lady.... almost anyway. So make sure u take time each day to smell the roses while you are young.

 Reply posted for ryleys gammy.

I am one of those rare people who have Crohn's and UC.  I have been very sick the past couple of months.  I am trying to get through this semester of school.  No one knows how I feel and what I am going through.  It sucks becuase I try to explain but I am embaressed to talk about it.  I have a great GI doctor and has helped me through every step of the way!

 Reply posted for roneth1974.

I'm not a Dr. and not offended at all by your post...I asked my Dr about UC ever turning into CD and vise versa because I've seen this Q at other boards...my GI is a lead researcher for crohns and colitis in Canada and his response to my Q about this was "no" but that one patient could have both UC and CD, but one does not "turn into another" so my answer is based on his knowledge, not my experiance.

Believe me, I'm the last person to rule out possibilities on pretty much anything, I'm rather open-minded and optimistic even, so like I said, I'm going by what an actual crohns and colitis researcher who also happens to be my GI said when I posed this question to him, which I thought was a very good Q...he also said that although both CD and UC are inflammatory bowel diseases, there is enough differences between them that make each their own entity...that's why it is possible for one patient to have both, just that it was very rare (or as I call it, super pooper bad luck).

:)

 Reply posted for pb4.

I don't know you and you don't know me so don't take this the wrong way because I am not trying to attack your personality, but are you a doctor? The reason I ask is you said with so much certainty and authority "UC can not turn into Crohn's". That comment upset me for many reasons. But first, let me tell you a little about me. I have 5 years of medical education along with working 4 exhausting years in major city as part of the trauma 1 team. During my 9 years in medicine I have seen some impossible things come and go from the trauma room and I would never ever make the comment which you did. I was always taught by my parents anything is possible and I beleive that. Did you know the majority of people believed at one time that flight was impossible... and look where we are at today. Also, did you know stress doesn't always cause ulcers? Most people where lied to and told that stress is the absolute cause of their ulcers. Well, if you too beleive stress causes ulcers then you neeed to read about the individual who discovered Hpylori. His name is Barry Marshall. It's a very interesting story. My point is when you read it you will see every top scientist and the entire medical community including the best doctors all thought it was "impossible" that this bacteria discovered by Marshall was the cause of the largest percntage of ulcers. Remember, this is not a personal attck, but did you read your post prior to posting it first. It sounded like you know all the answers and you didn't tell us anything persnally informative we couldn't have gotten off any web with a few keystrokes. I think these post boards provided by the CCFA were iintended more for individual experiences than making such bold statements as you did. My concern is you may mislead people who don't no any better than to question your authority. Anyhow those are just my thoughts.

 Reply posted for woodfish48.

Hi all :)

To my understanding CD can affect the entire GI tract from the mouth to the anus and UC is limited to the colon/rectom only....CD cannot turn into crohns nor vise-versa....one patient can have both CD and UC but it's extreamly rare...when crohns is affecting the colon it's referred to as crohns colitis col= colon, itis= inflammation.  It's not the same as having UC, with UC only the surface of the intestinal lining will be affected and the entire area will be inflammed, with CD the inflammation can go through the many layers of the intestinal lining therefore leading to a fistula (which does not happen in UC), with CD the inflammation has skipped patterns of inflammation as well.

I have crohns colitis and IBS as well.

:)

 Reply posted for ryleys gammy.

Hello again.

Good to hear from you. To answer a few of your questions; no, I don't work. I am exhausted all the time and between going to the doctor, doing medical exams, being in and out of the hospital, eating and preparing my own food, etc. is all at very minimum a 3/4 time job. To be completely honest I would much rather be healthy again and just work. At times, this disease can be overbearing. Over the last 4 years between hospitalizations, medications, exams, and the like my medical bills have racked up to be about 400 thousand. I am only 34 years of age but thank goodness I have Medicare. Yes, I am on SSDI (social security disability income). I don't feel guilty about that because I am very sick every day. I don't even leave the house for about 10-14 days in an average month. I actually can't think of the last time I didn't feel like I was living with the wosrt case of the flu every day of my life.

In the pathologists words I have "crohnic, active, severe colitis". 

Hang in there! Again thanks for the reply.

 Reply posted for roneth1974.

  hey "brother",

thanks for the insight. love your pic, i can see the family resemblance. lol  I
have so many "freakish" ailments it's good to hear I am not alone. am over all the testing/probing right now but that diagnostic pill thingy sounds promising if new symptoms/problems arise. weird cause i have had the same gastro doc for years. (she is the only female gastro around my area) and she seemed so surprised that  I have both forms of IBD that she said she had the lab test, re-test and test again just to be sure.

are you still able to work? I do good just getting some laundry and dishes done any more. the exhaustion has gotten so overwhelming I wonder how I ever worked full time and raised 5 children with this disease. meanwhile my hubby works night and day so I feel guilty being a burden. he likes to joke he just works to pay my medical bills. not far from the truth.

God Bless.

 Reply posted for ryleys gammy.

I've had indeterminate colitis for 14 years. Over those years I have seen about 8 different GI doctors. Originally, I was told I had UC but one of those doctors told me the colonoscopy looked more like Crohns. So I had the Promethius tests, P-Anca, and other tests done many times over the years. The strange thing is I tested both positive and negative for Crohn's on some of the tests at some times and not at other times and positive for UC on other tests at some times and not at other times. I know it sounds confusing. It was a mess. So that's when the GI doctor who had been treating me the longest said he felt it was best that I took the pill endoscopy test. That's when you swallow that pill that takes 50,000 photos/8 hours worth of your small bowels. Well, it came back positive for Crohns. It made so much sense now! You see I have UC in my large intestines and Crohn's in my small. So there you go, we are like brother and sister you and me.

I hoped that helped.

 Reply posted for woodfish48.

 hi jamie,

am sorry things have been so hard for you. my symptoms started @ age 8 and I managed to hide them from my family until I was an adult. with more responsibility came more stress and there was no hiding it any more. took yrs for me to really be taken seriously by any doctors so I suffered in silence for a very long time. when it looked like my son was following in my footsteps @ age 5,  I was beside myself.

am glad to hear your treatment seems to be helping.  I am humbled and counting my own blessings after reading about so much suffering on this site. read up on what u said. am gonna follow up with my gastro doc to get more clarification of my dx.

I am doing the mega dose of asacol still as well as some homeopathic treatments that have been nothing short a miracle the past 2 months. am still tired a lot (but I also have fibromyalgia and other health issues). my pain has been reduced to a fraction of what it had been for as long as I can remember. my homeopath is still shooting for a cure but I am just grateful not to be in agony every day. My primary doc is scared hes a "witch doctor" or something but prayer with prayer comes wisdom if we only ask.

God Bless, I will be praying for you as well.

 Reply posted for ryleys gammy.

 I have crohns colitis. Crohns colitis is crohns disease of the colon. I was originally diagnosed with ulcerative colitis at age 6 and now at age 26 I have been diagnosed with crohns-colitis. my doc. said that at some point uc became crohns. It can happen in a small percentage of patients.
My symptoms had been getting worse and it is very difficult to stop my flares. The doc. did a colonoscopy and based on the fact that I have gotten fistulas in the past made the new diagnoses.
I am taking humira now and doing better. I still had to resume a low dose of prednisione recently due to another flare. hope that helps.
jamie