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Cant definitively say sorry, but I would lay money they will be used somewhere in athe USA - lil ol'New Zealand has never been the first world leader in this area of medical technology as far as I am aware !

Next suggested step is replacement of current standard seatons with a 'comfort' seaton for sons fistulas (22 Oct 19). Some live permanently with them we are told. Surgeon wants to trial this first before further discussion re plug. Son is now leaning heavily toward rectal stump removal and being...

I am not sure if melatonin would work with prednisone being the root cause of insomnia, but it may be worth a try ? Son has had great success with it having tried all sorts to establish a healtjy sleeping pattern. Not fun....you have my sympathies

P.S Is this a treatment you have trialled yourself exit4? I will certainly ask about the availability in NZ for Crohns but my understanding treatment here is still limited. What treatment have you found to be successful for your fistulating CD ? Everyone seems to have such varying successes

Thanks exit4. Always good to hear first hand experience, and appreciate not all experiences are good ones. Desperate to avoid proctolectomy so this was suggested. Have yet to meet with specialist to discuss fully. In NZ so dont have access to Mayo clinic unfortunately

Diagnosed at 15. Ileo-caecal resection at 16. Initially CD large bowel only, but had several bowel obstructions in small bowel (go figure ?) 1st fistulas approx 5 years ago. (Flair hasnt lasted 5 years per se, but fistulas have been a persistent issue over that time) Total colectomy last year...

Hi. New to this group as caregiver for a 24yo son, diagnosed CD at 15, fistulating in ano-rectal area for past 5years. 9 procedures for fistulas. Currently has seton. Considering plug to avoid proctectomy. Any experience please ??? Thanks. (Originally asked question under treatment :))

Fortunately cant report sons experience on this to give others guidance as procedure never happened. (Pre) Flexi sig was EXCRUIATING and (as we thought) Crohns flair present in rectal stump. EUA showed fistulas. Proceeded to seton. Now awaiting plug to avoid protectomy. Had regional pain...

I would be grateful to hear from anyone who has had experience with fistula plugs for peri-anal fistulas. Thanks

Hi. Has anyone had any experience with ultrasound guided regional pain blocks (steroids and local anaethesia). Son has appointment scheduled out of desperation. We have been told the appalling low success rate. Any first hand experiences please ?? Thanks

I hear so much of my son reflected in what you say. He has often said his body seems like a rental and his landlord is constantly trying to evict him. He too has had many comments on his maturity and stoicism. I think it must be forced to develop through the constant trials and suffering. It was...

Shattered. Struggling to process the insult that 2 days back to back of out of town of specialist appointments were, and that we are not a lot further ahead. Having waited since October of last year to see a pain management specialist, following a talk fest of 90,minutes, he has to wait some...

We were given a verbal explanation of the "overdose" loading schedule which has not been detailed in any correspondence which I have just reviewed. Sorry cant help anyone nor myself out there. Many questions to be asked for sure.

Could not have said it better myself. You go Tubes !!! There has to be a special person out there somewhere for both you and my son.

Isnt this interesting ? What part of the world are you posting from ? Maybe because this is New Zealand, everything here is upside down and back to front. One would have thought protocol for this would be worldwide ????

Son schedule is 5mg/kg (was 10mg prior to surgery). 2 week intervals for 4 doses, monthly intervals for 4 doses, 6 weekly for 2 doses. Next dose is at 8 weeks. Thanks so much for your positive reinforcement. Seriously appreciated !

Thanks for that. He has been "overdosed" as well.... Gastro happy with that, but not prepared to go further now than the 8 week cycle ? That didn't work which is why they have thrown in the 6MP to the mix, which also hasn't worked. I will bear what you have said in mind. Im just confused, low...

3.17 was the last trough level. I don't understand fully, but gastro is happy with this ?

Son has commented on the same thing himself. Sugar coating the facts does no one any good in the long run. Facts have to be presented - in a rational manner - for sure - but presented none the less. Your info has been really helpful to me, as I need to prepare myself emotionally for all...

Fistulas (pre-colectomy) have all been located in the rectum. Some terminated externally in the anal area, most did not. Surgeon feels that current symptoms could definitely point to active disease (nausea, vomiting, increased bloody mucosal discharge, general lethargy and unwellness, ongoing...