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Biopsy Results back...OMG!! It's BOTH???!!

Hi All,

I am new around here and it is great to meet you all. If you want to read my story (aka NOVEL)- please go here to the "your story" section and find the thread " Hi! Newly Diagnosed IBD, on top of Bipolar I,Lupus and Menier's Disease..". That's me.

I have been in so much pain and am still in a lot of pain. I called my GI doc again this morning because I desperate for relief. We were waiting on biopsy results to see how to proceed. We got them this morning.

She took 9 biopsies from inside, and the results confirm I have both Crohn's Disease AND Ulcerative Colitis??!! How is this freaking possible??

My doctor wants me to have more blood work done to try to rule out UC. She feels pretty certain I just have Crohn's disease, but the biopsy results say otherwise so she needs more confirming evidence before she can really treat me better. During the colonoscopy she felt that I had UC until she got to my ileum and then felt I really had Crohn's Disease. She still feels this way.

Ugh!! :mad:

Any thoughts? Any experience with this situation?? Any ideas for pain relief?

I am currently on Asacol (800mg x 3 a day) and Prednisone (40 mg a day). Bentyl no longer works. I take the max amount of Tylenol (Acetaminophen) I am allowed in a day too.

Thanks and best health to you all!
-Jackie
 

theOcean

Moderator
Unfortunately pain relief is really difficult with IBD, since most of the medications aren't too safe for us. :( I was on dilaudid for awhile for pain, but that can cause constipation and makes you pretty loopy, so that's not always the best. Otherwise, there are other members of this forum that use medical marijuana to help with pain, but that's not legal in your state from what I remember.

I haven't personally heard about cases of having both UC and CD, but I suppose it might be possible. Hopefully further testing will help you to confirm things.

The medication that you're on is all UC medication, mostly, and isn't particularly effective for people with Crohn's. If you find that it isn't helping you, and that especially if you get worse if you taper from prednisone, you may want to talk to your GI about adding an immunosuppressant (Imuran/6mp/Methotrexate) or going on a biologic (Remicade/Humira/etc) to treat the inflammation.
 
Hi Ocean,

Yes, my doctor was telling me the same things you are and until we narrow stuff down, there is really not much that can be done-which is not great. I don't want to be drugged out anyway, but I would love to have less pain, D, cramping and belly distention. I would love to have a little more energy so I can actually live life a little more :(

You are right about my medication I am on now. Though she still thinks I have Crohn's, my GI is treating me for the UC stuff because I have so much inflammation and ulceration in my entire colon. She feels that is the most immediate issue to address. She also feels she needs to address the Crohn's issues, but we need to get it all settled first to see where we go next. She still feels I have Crohn's more than UC but, as it stands now, I have both and need to try to rule one out if we can. Once we figure out what everything is, she said she will be putting me on immunosuppressant (like Imuran-like you mentioned) and other types of drugs-like Remicade.The biopsies have made this more tricky to deal with overall and I pray more lab work will get me better solutions soon.

As far as medical MJ goes, you are correct. It is not legal here in Texas, even for medical use. However, we have family and friends in SoCal and actually moved from CA 6 years ago. If we visit and I can get some to use there while visiting and if it works really well, we may move back! We have always loved and missed CA and it may be another reason to move back permanently.

Thanks for your reply :)
-Jackie
 

theOcean

Moderator
I was put on biologics even when I was still being treated for Ulcerative Pancolitis, which was my original diagnosis. It's since been changed to Crohn's Disease after developing a fistula, but even now my GI says that my symptoms seem like a mix of both Crohn's and Ulcerative Colitis, so I may actually be in the same boat as you. :p My illness was so severe we had to move straight ahead to biologics/immunosuppressants regardless, though. That's good to hear she has a treatment plan for you, and to me it sounds like it should help once she finally starts you on it. :) Good luck with the lab work!

And aw, that's great! If you do try it, I really hope it helps you. It's recommended to use it with a vaporizer if you do, since then there won't be any damage to your lungs, and I believe it's more efficient that way. :)

Hope you feel better soon.
 
jacktin, we had a similar experience at diagnosis. The colonoscopy showed crohns. The pathology showed UC. For about 5 months my daughter was given the diagnosis Indeterminate Colitis. After the MRE our doctor gave us the diagnosis Crohns. She still says there are a few things that present like UC, but stands by the Crohns diagnosis.

Don't get too hung up on the name. I know someone that has lived 15 years with the indeterminate label and the treatments are identical. Focus on finding a way to manage with IBD and the label will dissipate. Pain...that is a struggle I still haven't found answers to but I'm still looking!
 
Hi SupportiveMom,

Thank you for your reply. I LOVE your avatar BTW! It makes me smile :)

I am still reeling from all this (what I thought was a bad stomach bug or something turning into what was actually IBD) and for the biopsy to say both kind of took me on another surprise. However, like your situation, my doctor is standing behind a Crohn's diagnosis more and has shown me why through all the pictures and labs. From what she has shown me, I believe her. My doctor seems to be very much willing to help me, which I feel very blessed about. She is very determined to get me the right diagnosis quickly and treat me very quickly with strong desires to get me to remission. She seems to listen and is very responsive to my needs, so I am praying for solutions and some pain relief soon.

This morning, she has already ordered an IBD serology 7 test and has already upped my Prednisone to 60mg. She also wants to see me in her office the week of the 16th-which was quicker than we originally set up. She would see me sooner but she will be on vacation starting tomorrow and she wants a little time to get the results back from this very specialized blood test I am doing today.

Again, thank you for your reply and support :) I hope you get the best solutions and the most relief possible asap!
 
It is difficult coping with pain, I wish the UK offered medical marihuana. At the moment I have both tramadol and Oramorph for when the pain gets really bad. Pain tells us something is wrong, painkillers are a bandaid, but what is important is to get the symptoms under control because then the pain will go. I am on both Pentsa and Aziathropine and find for the most time they keep me in remission with no side-effects. Hopefully the steroids will kick in and you will start to feel better.
 
New diagnosis... I recall the pain & confusion and just being downright scared. Big hugs. I promise it does get better. There will be ups & downs along the way but when the downs come & you are looking for answers or just wanting to feel like you aren't alone this forum is amazing.

Ask questions here, your doctors, everywhere you can. It was the only way we made it through the first year.

From our own experiences & others here so your best to get on a maintenance drug so you can get off the prednisone. I avoid the drug as much as possible & use it as last resort only. Welcome to the club... people here are beyond amazing.
 

Kev

Senior Member
Hi there...

For a long time the experts said you couldn't have both. Well, I did... apparently you do too. I think I've chatted with less than a handful of people on here who were lucky like us.

Yes, I say lucky. When mine hit, the UC spread like wildfire.. the Crohns much more slow. And it turned out to be the luckiest thing that could have happened. You see, they competed with each other for space inside me... and because of the nature of UC, it won most of the space. When I finally found a way to drug my disease into submission, I was left with some nasty, inoperable scarring from the Crohns... but everywhere the UC was reverted back to healthy tissue. Having both was the best thing that could have occurred aside from not getting it at all. It is all a matter of perspective. At least that's the way I see it.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Yup...my original diagnosis was UC...then changed to Crohns' - and/or even Crohns' Colitis....

I actually found some old medical records while cleaning out paperwork the other day, and was interested to read that my diagnosis was UC.....part of what changed by diagnosis was that I developed fistulas...wihch is a sign of Crohns'....
 
Thanks to ALL for your wonderful support :) I appreciate it.

@ SupportiveMom- Thank you :) So far, people such as your self have been amazing and supportive. I really need it right now navigating through what is shaping up to be a lot more than I bargained for. But, I feel blessed I have the support and medical support. With that, I feel we are on the path to getting me better :eek:)! Yes, I am on a lot of Prednisone now, but my doctor has already told me this is just an immediate help--NOT a long term solution. We will be figuring out what to do next after I get my IBD serology 7 test back in a week or so to see where we go next. She said I will be off Pred by hopefully next month.

@Kev- Thank you for your support :) I like your positive outlook on this strange diagnosis and am happy to not be alone. I baulked when the nurse told me the findings because I did not even think it was a POSSIBILITY to have both. After the procedures, my doctor waited for me to wake up and show me a ton of gross pictures from my colon and stomach to tell me the same thing: she thinks its both too from what she saw but thinks it is more consistent with Crohn's. She took 9 biopsies inside and said we will hopefully confirm just one IBD (She really thought just Crohn's but was very aware that I am completely ulcerated and inflamed up my entire colon. The pictures prove that too). The biopsies confirmed both, unfortunately. So she sent me to do a specialized IBD serology seven ($300 with insurance I may add :mad: ) to hopefully rule out UC so we can get me on a better treatment plan than taking high dose of Pred. Like you though, I am going to try to stay optimistic and just trust everything will work out :)

@Daisy123-Hi and Thank you for your supportive reply :) Where I live in the US (Texas), medical marijuana is illegal-even for medical purposes. I do not and have never used marijuana for anything (medical or recreational) so I would not know how it would help, but many people swear by it and if it will help me-I would use it in a heartbeat if the situation allowed it. Where I use to live (California), it is legal in the state and some counties with a doctor's prescription, obtaining a medical marijuana card and going to a medical marijuana dispensary. However, it is still a risky gamble because the US government makes it illegal throughout the United States (regardless of the state's stance of legality on marijuana) and you may still get in trouble if dealing with federal agencies/police. It is unbelievably complicated :/
I hope my doctor can get what she needs to treat me with a better medical plan soon. In the meantime, I will wait and try to be optimistic that the Pred will kick in (now that she has upped it more) and give me some much needed relief. Thanks again :)

I wish you all a restful and pain-free weekend :)
 
@Pasobuff-Thanks for your reply :) At first my doctor said that too- Crohn's Colitis. But the biopsy results taken surprisingly are both. It is insane and I really hope my doctor can rule out what she thinks she can (UC) so I can get better treatment and, dare I say it, be on the road to remission. A girl can dream right? LOL. I am finding out so much about IBD, both good and bad. At the very least, I am feeling not so alone and feeling less scared because I am more informed. Thanks again.
 
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