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pjp
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 3/7/2010 7:00 AM (GMT -7)   
I have a 15 yr old son DX with UC last year, we just changed Drs because she seemed very unorganized, I had many red flags with her, but we live in a rural area, there are not many Drs around here, we had to drive 3 hrs to see her, I found another Dr closer and we saw him the other day, As he was looking through our records he said He was confused why she told us it was UC, because the biopsy report said crohns that there were granuloma cells and you see that in crohns not UC. I would have fell if I were standing, you see the only way we have gotten through this in the last year was being thankful it wasn't crohns. I had such a hard time dealing with it I just kept telling my son at least its not crohns. I am lost for words with him. I know we will get through it, but I'm so upset that I put my trust in a DR. This new DR is very organized and strait forward. He made sure we understood every thing before we left. We had blood work done to see if its Crohns or UC, which they are not sure how well it works. IBD serology 7. I want to confront the old Dr when we get the results in,I'm not sure how to handle this. Has anyone had an simular experience?
Thanks for listening...

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2010 7:08 AM (GMT -7)   
Hey Pjp and welcome to Healingwell. I don't have experience myself, but I know many on this very forum were first diagnosed as UC then later found out it was really Crohns. Tell you the truth, in my opinion, IBD is IBD, they are both miserable conditions. But...they are not death sentences either. I have lived with this disease for nearly 35 years. I have 3 grown and healthy daughters, 5 grandchildren, and have worked at the same job for over 20 years. There is life with Crohns, you just have to learn to adapt to it. My best tip to you is to ALWAYS have your son on maintainence meds. Crohns is a chronic and incurable bowel disease and must be treated at all times. Good luck to you both. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/7/2010 7:10 AM (GMT -7)   
Hello, pjp. Welcome

I was diagnosed when i was 13 and im 22 now.
I was told I had Crohn's From a simple blood test as well. And than admitted for a colonoscopy.

It def. is bothersome to hear one thing and than another. I can relate because im dealing with the same type of situation but with meds Vs. Surgery.

You will get through it.

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 3/7/2010 10:19 AM (GMT -7)   
I think we all wish we did not have this particular hurdle to deal with on a daily basis, but it is not the worst DX that I can think of.
I work, have social outings and in general enjoy my small world. However I will always be on meds. I will always have to manage this. I will always have to question my drs. I will always have to figure out what is best for me. And I will always fight. I will listen to others but ultimately I am responsible for what I allow done to my body.
Have confidence in those you include in helping you come to a conclustion, but question everything. YOU and your SON are in charge. Good luck and I hope things start to turn around.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/7/2010 10:23 AM (GMT -7)   
Hi. I know what this feels like. My husband was diagnosed with Ulcerative proctitis (by biopsy) in March 2003, and all was well, and he was doing fine just taking Canasa suppositories for maintenance. In fact, his GI felt that it may even have just been a one time thing, and that his case was so mild, if anything at all. Then, bam, in March 2008, my husband ended up in the hospital with a c-diff infection (while he was taking no antibiotics), and was also diagnosed with severe crohn's inflammation in a large part of his transverse and ascending colon! He was in the hospital for 45 days, and lost about 48 lbs, and was being followed by a surgeon for a resection. But thankfully for him, Remicade saved the day, and healed his colon and he came back home.

It's now been 2 years since that happened. Things have not been smooth sailing, but he's doing ok. He's had a few ups and downs, but we've managed. Yes, Crohn's can be scary, and I know that all the medications are incredibly frightening, but life still goes on. I've learned that there is little point to worrying about the what ifs, all you can do is take care of the here and now, and make the best out of every moment. In some ways, our lives are better now than 2 years ago - we take the time to enjoy things in life, we've stopped working crazy hours, and we spend more time with each other. My husband still holds down a full time job, and is productive. He is in remission, can eat most everything he wants, and is normal. The only question is of course, how long this remission will last.

I too consoled myself with his ulcerative proctitis diagnosis, saying it was so much better than the alternatives, especially crohn's. And now, we've had to face the crohn's diagnosis . . . it was a terrible blow . . . and we're ok. Life gives us no guarantees, and we just have to be ok with it, and make the best out of what we have. Crohn's is manageable. I am encouraged by the number of new therapies in the pipeline. I know that if my husband had landed in the hospital even 10 years before he did, he'd have come home without 1/2 his colon. Instead, he's home, without surgery, leading a normal life . . . because of the advances made in medicine. So, hold on to hope - new medicines are in the pipeline, and everyday brings us closer to newer better therapies. Oh, and another thing - the medications used to treat UC and Crohn's are pretty much the same. The only difference is that with UC, removal of the colon is a "cure", whereas Crohn's can come back after surgery. You wouldn't jump the gun to surgery anyway - so for right now, the treatment isn't different, and so the choices you have to make are not really that different.

If the biopsy results stated that it was crohn's, and your previous GI told you it was UC, then, she made a mistake. In my husband's case, his biopsy was consistent with UC. A lot of people with UC are later diagnosed with Crohn's - this happens because the diseases can mimic each other - the only way to know for sure is to see those granulomas in the biopsy (however, if the inflammation with crohn's is mild enough, you may not see granulomas in the biopsy). In fact, for some people, they only find out they have crohn's, after they have had surgery for UC to remove the colon, and the disease comes back say in the small intestine! Imagine their disappointment when they are diagnosed with Crohn's after they thought they were through with IBD! As I said, there are no guarantees.

If you've moved on to another doctor who you think you can trust, I don't see how railing against the old one will actually help anything, or change anything. I am still upset with my husband's old GI, who between 2003 and 2008, never did a full colonoscopy on my husband - perhaps we would have known about Crohn's sooner, and could have prevented my husband's hospitalization if we'd known. We just moved on to another GI, whom we trust, and just put the other GI out of our minds. That's just my humble opinion.

You and your son will learn to cope with this diagnosis. And he's going to take his cues from you - so chin up, and be positive, and focus on the silver linings. (((Hugs)))

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/7/2010 1:28 PM (GMT -7)   

 

I fully understand how upset (and frustrated) you must be feeling right now. I had the problem of getting my son past the Dr to a specialist(Dr said it was heartburn) he finally got referred and more or less got diagnosed immediately then. My initial reaction was great there was(is) something wrong and I am not a neurotic mum and we have a name for what is  actually wrong. Then came the reading and research and then I wished that I was neurotic and nothing was wrong!

I felt so much anger towards the Dr who had 'fobbed' us off for  2 1/2 years, a couple of months down the line now I am still cross although I haven't done anything about it-we still go to the same surgery but see one of the other Drs there. If, for whatever reason we did have to see him again I think I would bring it up but hopefully I would be a little calmer about it now.

One thing I have learnt is that there appears to be a lot of initial mis-diagnosis with this disease, it doesn't help but at least you know that you are not the only ones.

If you and your son are anything like me and mine, he will be quite accepting of the fact and you will do all the worrying for him. My heart goes out to you, as parents we tend to look at all the difficulties years down the line but what our children need is for us to reassure and stay positive for them(as PV said)

Haven't been here too long myself  but they are a great group always ready to  give advice and listen-sometimes it's easier to come here and express how you feel (get it out your system) and then be ready to support your child once more.

I wish you both luck


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/7/2010 3:17 PM (GMT -7)   
You are doing the best thing you can do, which is getting educated about this disease. But what you must always remember is that while everything you read about Crohn's is a POSSIBILITY, most things are not a PROBABILITY. Most people with Crohn's disease have an initial flare, sometimes lasting for a few years, where diagnosis and treatment can be hard to come by. Once things settle down and the right course of action is found, they take their daily maintenance medication (which your son should always be on!) and they carry on with life barely thinking about Crohn's. A lot of the people here are either the hardest hit, or the newest diagnosed, those needing support. Then there are those of us who have had the disease for many years and have seen it all, so we try to lend an ear and help out as much as we can because we have been there and done that.

My mom had CD all my life and I was officially diagnosed when I was 23 even though I showed signs at 13, so I really have lived with this disease for my entire life. Both my mother and I have had wonderful lives. CD gave us some bumps in the road for sure, but everyone has those. And there have been some amazing advances in medicine in the last few years. Hopefully your son will be one of the many who find the right medication and achieves remission and stays there for a good long time.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/7/2010 9:53 PM (GMT -7)   
rolleyesscoolWelcome pjp to you and your son. Remember 50% of dr's finish in the bottom half of their class! I'm sure he didn't treat you like this intentionally, he's just not very smart.wink
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


pjp
New Member


Date Joined Feb 2010
Total Posts : 6
   Posted 3/8/2010 7:36 AM (GMT -7)   
Thanks for all the encouragement, It surely helps me look at things different. I know it could always be worse.

I was DX with RA 4 yrs ago, I went through hell and back until we found something that worked. It just brings back some emotions I buried. And it gets hard trying to get people to understand what you are going through, thats why I'm glad their are forums like this. People who can understand and help out new people just trying to get through the day.

I know we will get through it.

pjp
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