• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newbie introduces herself

Hi guys,
I'm a Crohns sufferer just recently recovering from a total colectomy with terminal ilieal resection. I have just also discovered that I have Crohns disease in my small bowel and today I found out that Crohns is also present in my mouth. I am under NZ specialists, gastro/surgical/oral and will see the surgeons on the 19th of this month whereby we will be discussing if it is a possibility to reverse the bag I currently wear. I also suffere from ankylosing spondilitis, so my recovery has been hampered by getting severe pain from a bursitis in my right hip which was given cortisone injections which unfortunately did not work. I am awaiting a further appointment to sort out medication but in the meantime am taking Tramadol, Panadol as painkillers. I also contracted Chemical Hepatitis which still has not receded since my diagnoses so I'm very tired. I am starting physiotherapy next week to help me learn how to walk properly again on my right hand side and am usually at the hospital or the GP's every week for some test or other. I have also volunteered for research as apparently I'm an anomoly as when I was first admitted to hospital for extreme pain, I was given Humeira and steroids, but I was actually too gone for that (we now know that in hindsight) and when I finally had my operation for an iliostomy, my bowel had swollen to 8cm in diameter and the upshot was my hubby got a phone call mid surgery for him to consent to the removal of my bowel and also to be told that I might not survive the operation. I was just wondering if there is anyone else out there who is in a similar situation. It feels like every week I am getting a knock back of some sort or other and our health system pharmaceutical company that controls the release of drugs does it on a numbers and cost basis, not an actual patient basis, and my specialists have decided that Humeira would really benefit me but unfortunately for me, it is an uphill battle convincing Pharmac (the company in question) to invest their money and give me Humeira. I guess I just want to see if I'm alone in this boat or if there is anyone else who can share the rowing???!!! I have a great sense of humour (thank god) so if anyone wants to share, I will be more than happy. You just feel so alone in this journey, and even though I have a fantastic support network, it still feels like I'm just doing this alone. Look forward to hearing from you :D
KiwiJ
 
Hi Kiwij, I just wanted to say hi from Oz, you certainly have had an arduous journey with Crohns, I really hope you get some positive news soon Regards Deano
 
Thanks Deano, it is an arduous journey and can only take one day at a time, one step at a time but thanks for your best wishes, really means a lot :)
 
Hiya! Will be great having you on the forum as I am yet to meet another Kiwi on here. Good luck with everything I hope you get your desired outcome.
 

David

Co-Founder
Location
Naples, Florida
Hey there kiwij. I'm so sorry to hear of all the problems you've been going through :( I would definitely research all the treatments under our "Treatment Forum" as there might be some you're not aware of that are highly beneficial.

There are definitely some people around here in the same boat as you that you can connect with.

We're here for you!

*hugs*
 
Thanks David, Im hoping I get pointed in the right direction in my ongoing treatment of Crohns disease. i have just found out that I have Crohns in my mouth, small bowel and also there might be some inflammation in my rectum. It seems that this does not bode well for a reversal of my ilieostomy, but will get confirmation from specialists next week. Just wanted to know if anyone on this forum is in a similar situation or has been through this and could give me a 'heads up'.
Julie
 
Quick update. I have now found out that I have Crohns disease in my mouth, small bowel and my Colonoscopy in 2008 also showed that I had patchy disease predominantly in the rectum. I'm meeting the surgeons next week so it seems that a reversal may be a little out of reach. Is there anyone else out there who has had the same symptoms in the same place?
 

David

Co-Founder
Location
Naples, Florida
I'd start a new thread in the general discuss forum asking exactly that in the title. Something like, "Crohn's Disease of the mouth, small intestine, and rectum". You'll be more likely to get a specific response to that. :)
 
Hi Kiwij :welcome:

I'm an Aussie with a New Zealander father and lots of relatives over there.

Sorry to hear that you have been having such a hard time. It's a cow of a disease, isn't it. If your Crohn's has spread to the rectum, you are right, they might not be able to do a reversal. I had to have everything from the last section of the small intestine to the anus removed and have had an ileostomy for the last 13 years. For me, things improved radically after that last surgery and I can only hope that you are headed that way, too. :hug:

By the way, if you want a laugh, have a look at some of the threads in the Humour section of the Members Forum. My favourite is the "LOL cats" thread here
 
Hi Susan :ybiggrin:

Firstly, thank you so much for replying to my post. It's great to hear from someone who has had a similar circumstance to me.

Thank you also for confirming what I pretty much thought. I guess I was shooting for the stars and I think it's a good process to get in the mindset that I have to get into before I visit the surgeons as I've had so many knockbacks recently and shocks that I simply could not take anymore. So you have really helped, thanks.

So, correct me if I'm wrong, but did you have some of your small bowel removed as well as your large bowel and rectum? Do you also have Crohns in your mouth? And last question, what meds are you on for management of the disease?

To complicate matters, like a lot of Crohns sufferers I also have ankylosing spondilitis and I'm in agony. My specialist has said that I don't qualify for the criteria to get Humira which in itself is completely laughable but they are trying to get me some regardless, however they are not hopeful. I have physio today so I'm looking forward to being twisted like a pretzel....not! Lol

I will check out the humour sites, and especially the one you recommended. Nice to hear from another antipodean :ylol:

Regards
kiwij
 
Hi Kiwij


Yes, I had some of the last section of my small intestine removed as well as my large bowel and rectum, but I am fortunate in that my Crohn's has not travelled any further up than that so far. I am well aware, however, that the possibility still remains of it popping up again somewhere else.

I was on Prednisolone for 25 years before my last operation as nothing else had any effect (and, of course, some of the modern drugs were not available) but since the major op. I am taking no medication at all.

Keep us informed about how you are going and ask any questions that you like - and remember that nothing is off topic here! :yfaint::ybiggrin:
 
Hi Susan,
It's like a breath of fresh air talking to you. Even though I have a fantastic support team, not one of them really understands what I'm going through so thank you so much for taking the time to help me out.

I am so sorry to hear that you had all of that taken out of you but as you say, at least you are in remission, which is great. Can I ask you how many bags you are funded for a week? In NZ it is only two which is not ideal but apparently that's all that the NZ health system is prepared to fund.

I guess I'm just finding my way and it's great to hear that no subject is off limits. I would also like to know how to be intimate as I am well, sort of embarrassed I think, and in a lot of pain, so I feel about as sexy as a paper bag at the moment! Even though I've looked the best I have ever have in my life, I still feel weird. I guess that's normal? I think if I have to keep my bag, then I want to deal with all my demons so that I can move on and just get on with my life. I hate having all of this festering inside without an outlet.

Anyway, thanks for your help all the same. Please don't feel that you have to answer everything. I will completely understand and like I said, I'm just pouring stuff out rather than have it mount up inside.

Kiwij
 
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