Hi everyone,

Wee Willie hasn't been himself lately and neither have I really. I have been getting a low grade fever in the evenings with lots of lovely night sweats. Also been having some strange abdominal pains, a stabbing pain just above my pelvic bone and a dull pain up under my right rib. Now if that weren't enough I now have a couple of ulcers on Wee Willie himself and he looks decidedly pale and blotchy.

I've had these little ulcers before but this time it was big was enough for me to get my stoma nurse Marlene to have a look. The upshot was that having spoken to my GI he wanted my surgeon to take a look and the only way I would be able to see my surgeon today was if I went down to A&E and waited for him to come out of theatre (just my luck that it's his theatre day! ) So..... that's where I've been all afternoon!

He came in as soon as he was free and took a look. Poor Wee Willie was looking very sorry for himself and there were signs of another couple of ulcers starting appear so he is sending me for a CT scan, biopsy and blood tests. He said there is no doubt that things are very inflamed at the moment and he suspects that I may have Crohns and not UC as was my original diagnosis, which is what I have suspected all along! I should get the appointment for the CT scan sometime this week and then a follow-up appointment with him as soon as he has the results. I feel so lucky that we now have such a great surgeon on the island and I no longer have to travel to the UK to be seen!

Anyway, I just wanted to hear what all you other folks who've been diagnosed with Crohns after initially been told it was UC think. Also I was diagnosed with UC 30 years ago, how long after your original diagnosis did you find out that it was Crohns?

Thanks in advance for your input.

Shell

Shell,

Sorry to hear of your current situation and I hope you get good news soon. I had also been diagnosed with UC several years ago and subsequently had my colon removed and a j-pouch made. Since then I have had two pouch connections that gave me lots of problems and now both the GI and my surgeon think that I have Crohn's. I recently had my 3rd loop ileostomy, which I will make permanent when I have the pouch removed. I am waiting to see if there is remission in the pouch or I may need to try Remicade if it doesn't go into remission by itself.

I know that you have been through lots of stuff over the years but have you ever used Remicade?

You have been an inspiriation for me to proceed with having a permanent ileostomy as you seem to have done so well with it.

Please keep us posted as to what you find out.

Take care,
Jim

Hi Jim,

Thanks for your prompt response, I really appreciate your input.

No, I've never been on Remicade, in fact I don't think it was available to us here when my UC became bad enough to need surgery 11 years ago. What are the possible side effects? Is it as bad as taking steroids?

To be honset, I'm trying not to think that far ahead, but I suppose I should because if this is Crohns I will have to think about some sort of medication to bring me back into remission and I sure as heck am NOT going back on Prednisone! The thing I have been striving to achieve all these years is to be drug free and now that I am almost there I am really reluctant to go backwards! Well I guess I'll have to cross that bridge when I get to it!

Thanks again for your kind words and advice.

Shell

Hi Shell,
Sorry to hear your having troubles with you and Wee Willie. Every time I hear the name Wee Willie I think of the movie free Willie, What an appropreate name for your stoma as you free Willie when you take a shower on change day. I have yet to name my stoma.

In 1986 the year I got married I was dx with UC,got my jpouch in 97. In july of 06 when I had my jpouch removed and during that op I was suppose to get the kock, this is when I found out I now have crohns and because of this dx it meant no kock and I awoke from surgery to my permanent ileo. Pathology later confirmed the dx of crohns.

So far I have had zero issues with the new dx and am taking no drugs other then a protonox,iron and a bone health pill.

I wish you luck on getting this issue cleared up. Even if it means taking some new drugs, we do what we have to do......Take care

Shell-
I am so sorry to hear you're not doing well! I echo JP's post that you have been an inspiration for Paul to go through with the permanent ileostomy...He's donig exceptionally well, by the way. Your positive attitude and encouragement have been hugely helpful to us both! We have no experience with the Crohn's question, just writing to say we're sad to hear you feel crummy.
Keep us posted here. We all care.
Betsy and Paul

Hi! I'm one of those who was diagnosed with UC about a year after my daughter was born (she's now 36 and expecting). Was seen for consults with the most famous GI specialists here in the States (at Mt. Sinai in NYC, Johns Hopkins, Medical College of Virginia) as well as several local GI specialists. Everyone agreed...UC.
Had J-pouch surgery for UC in 1995 (30+ years after initial dx). ALWAYS, from first post-op scope had pouchitis...worsening for 8 more years.
Went to Cleveland where, thinking I had UC, Dr. Fazio made K-pouch. But, as soon as path report came in, Dr Fazio said I actually had Crohn's.
He said K-pouch might not last forever, but I was glad that I at least had a chance with it. 3 months later, hospitalized twice for acute renal failure (as a result of Crohn's in pouch) and finally was hospitalized in Cleveland. They did pump me full of steroids, but soon local GI added 6-mp (purinethol), overlapping 'til 6-mp worked, about 4 months. No Crohn's flare since then!
I did have gall bladder and hernia surgery (at same time) in Cleveland 4 months ago, but even that didn't result in any flare.
Purinethol is GREAT. It's worked totally for over 3 years. I wonder if I had taken it long ago if I would have avoided all surgeries.
It takes a while to kick in, but it can do wonders. Maybe it would work for you too. I hope something does. Your picture is so pretty and you shouldn't have to suffer any more tummy trials.
Carol

Oh Shell

I'm so sorry to hear that you continue to have problems, but you've always suspected Crohn's, haven't you?

There have been so many recent posts about UC turning out to be Crohn's, including some people who had no problems with their pouches for years and then suddenly developed complications.

I have also read lots of recent posts about Remicade. Plus, Dave has been doing well with Naltrexone:

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/7281...031060012#7031060012

I'm a bit different - my initial diagnosis was Crohn's (and I had classic Crohn's symptoms) but some doctors thought I may have UC because there was no small bowel involvement. When my colon needed to come out (because of cancer), my surgeon agreed to give me a j-pouch if there were no signs of Crohn's in the colon. Well ... to everyone's surprise, the pathologist found a healthy colon with no sign of any illness, and I woke up with a j-pouch!

I've had the pouch for nearly a year now and, apart from a couple of small fissures (which my surgeon isn't concerned about), I'm doing really well. I believe that something (or a combination of things) I am taking for the cancer is helping to keep the Crohn's away.

This is what I take - a vegetarian-based digestive enzyme (which the manufacturer claims helps Crohn's patients); a herbal supplement with turmeric, ginger, boswellia and citrus bioflavonoids; fish oil; and maitake mushroom drops.

I also eat plenty of fresh herbs, garlic, onions and ginger and drink lots of tea and some wine (lots of anti-oxidants).

Shell, I suggest you try digestive enzymes - they can't harm you and they should at least make you feel a bit better.

Finally, I'm sending you lots of ((((((((((((())))))))))))) and plenty of good healing vibes from Australia.

Nikki

Judging from Shell's sign-off, she's already diligent about taking in enough red wine

Hi Guys,

Thanks so much for the words of encouragement, they mean a lot to me. Thanks also for the suggestions, I'll be well armed with information when I see my surgeon for a follow-up after the CT scan.

Talking of scans, no word yet from the radiology dept on a date for it, but then the wheels of our Health System grind almost as slowly as the NHS! Although, having said that my surgeon is very good about hurrying things up and not leaving you high and dry, so I'm still hopeful that the scan will be either this week or next. (have to be the optomist! )

Don, I named him Wee Willie because he looks like a little male willie, not after the whale! He very nearly got called Big Willie when I first saw him because he was so huge post op, but thankfully he shrank in size after a couple of months! I'm glad that you are still doing well with your ileo.

Betsy, I am so glad that Paul is doing much better! It's about time things turned around for him!

Carol, you are making me blush with the compliments, that is so sweet of you! It sounds like you've been through the mill also. I'm pleased for you that things are stable now.

Nikki, you are correct. I have suspected for a long time that my original UC diagnosis was wrong. I've had too many Crohns-like symptoms for it to be just a coincidence, (fissures, strictures, pouchitis, internal abscesses, perianal abscesses, mouth ulcers, perianal ulcers, peristomal ulcers and now deep ulcers on Wee Willie!) In fact the only symptom I've never had (thankfully and touching wood) is a fistula. Thanks also for the link, I saw that post by Dave and was planning on asking my surgeon about Naltrexone.

Mike, I should be as fit as a fiddle by now, not just because I like a drop of the old red stuff, but I eat lots of garlic, onions and herbs and drink tea all the time. Well at least I should have a strong heart!

Anyway, thanks again for all the encouragement. I'll post an update just as soon as I've had the results of the tests.

Shell

I know you will get through this new "bump" because you have the best attitude in the world! I'm sorry you have to deal with it though. The worst part is not knowing, so I hope all the diagnostics get done in a hurry! We're cheering for you over here!
Take care...Lori

(I would LOVE to have a glass of red wine a day if I could ever get off of Flagyl!

Hi Shel,
Just have to tell you that I love your nickname for the ostomy, ´cos that´s exactly what mine looked like too! Though I wasn´t able to handle it at all. I just shrieked that i had a penis growing out of my belly and it was completely revolting. Had I seen your postings referring to your Wee Willie maybe I´d have been able to handle mine more lovingly than I did! If I ever have to have a permanent ileo (oh please god don´t let that happen) then I will think of your optimism and cheeriness and find an endearing name for mine too so I can accept it better than last time. Really hope you get over this latest hiccup. My friend has just had the same thing happen (UC diagnosed about 5 years ago, now they say Crohns) and her loop ileo may have to become permanent, says the surgeon, because her rectum is too diseased. Fistulas etc. I´ve always worried about misdiagnosis, but hope it´s just me being negative. I cross my fingers for you.

Hi Shell

Really sorry to hear about this recent turn of events. I can't offer any advice about this potential Crohns diagnosis but from one previous patient of Mr El-Gazzar(Osman) to another, you know you are in good hands and he'll do all he can for you.

Hope things turn out for the best

Clive

Shell,

I am sorry that you are having troubles. I hope you get to the root of your problems soon!

Becky

Hi Shell!
My DX for UC was 25 years ago. J-Pouch done 15 years ago. And Crohns DX 2 weeks ago. They want me to keep the pouch as long as possible. Treating Crohns with Remicade, 3 years ago, for Ankylosing-Spondylitis, helps Crohns. Raising my dose of methotrexate and remicade and adding Immuran to lesseen the current flare. I have severe mechanical blockage issues at top of pouch. Currently caused by stenosis caused by Crohns. But they are using a ballon proceedure to open it up. Wait a minute...lossening tights, they are bunched up...Agghhh.better. Also awaiting biopsies when flare goes down. Seems like there are some hitch-hikers on outside of pouch(nodes) going for a ride up to the head of my pancreas!(nodes having a party) If I had a bow and arrow I would shoot them! CT scan showed all these little rascals. Hmmm...yes you are a inspiration to me, and all on this site! Some lead and some follow, I push the others to the front! Have you been pickling Wee-Willie with the wine? You make me laugh, because you are so honest. I'm hoping for the best of outcomes for your ct scan. On the other side of the pond...Arthur Shell, I have a pic of my pouch and blockage, How do I post it?

Oooh no Shell! But, perhaps this new diagnosis will actually help you?

I have CD as you know, dx soon after surgery. I'm on Remicade, 6MP, flagyl, and cipro... not exactly what I had in mind but if I can keep my pouch OR just function in any capacity, that is okay by me! I also take digestive enzymes which I have been swearing by lately.

I'd join you with a glass of wine, but like Lori, that damned flagyl keeps me away (and 6MP!)

Good luck with everything