Doctor that actually has Crohns

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ukstephieandcolette

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May 1, 2010
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Ok, so this is a question for everyone.

Do any of you actually have a doctor that treats you that actually has Crohns?

Guess what - we do!!!!!!

So we thought it might be interesting and beneficial to do an interview with ours and post it on the forum realting to our disease as both a doctor and patient. If this sounds like something you would all like to read, please leave your comments on this thread.

Thanks,

Stephie - the caregiver
Colette - the crohny for 24 years and counting
 
YA... I would definitely like to read it. Thanks for thinking of us Stephie and Colette! I hope you both are doing okay (under the circumstances) and that you both like your doctor. A doctor that understands! WOW! :ywow::awe:
 
Here, here...

I am interested to...My doc is the head of our local hospital's GI group and seems to be really sharp but I can't quite get a read on what goes on in her head. I t would be nice to hear an unguarded thought from an actual physician.
 
Hi Gypsey, welcome to the forum, perhaps you could tell us your journey on a MY Story thread, so everyone can welcome you to the forum, glad you found us!
 
Thanks to all of you who replied so far. To answer a couple of the questions, firstly to Rebecca85 we are still in Los Angeles right now but due to other illness circumstances we shall be jetting our way over the pond very very soon. When we do get over there we shall be located up in East Yorkshire, so not sure if a dr swap would be feasable.

To Merrywidow, this dr of ours here is amazing, he will make the time for an interview, he is already rather excited himself at the thought of being able to inform and maybe advise via the interview globally. He is the most compassionate, caring, (and sometimes funny) doctor we have found. Colette is actually his patient, but as an example of how cool he is, when he heard about my mother and how bad things have gotten he didn't hesitate to "help" me out through all of this. We can call him night or day, and he has the patience of "Job".

We are planning to get the interview rolling within the next few weeks (according to all our schedules) so what we also thought would be good was if any forum members have any questions you would like answered please post them or send us a message and we will try and incorporate them with ours.

Thanks to everyone......

Stephie - the caregiver
Colette - the crohny for 24 years and counting.....
 
Having Crohn's makes up more sensitive and compassionate. I never had a doctor with it but the technologist who dx's me had it , he was not a tall man, because he must of had it young. He gave me some advice and that was it, no computers at that time lol.
 
forgive if i am wrong, but something doesnt ring true here.

you implied, by your name, that you were in the uk, it now turns out you are in usa.

how can you do a inteview if your going to the uk in a few weeks time?
and what about the drs. confidentialitity? if the dr want s to put his words and opinions on here that is his choice.

how can a dr work if he has crohns?
most of us cant keep a part time job.
stress makes crohns worse and being a dr is very stressful.
what happens if he needs the toilet? he cant leave his patient can he? and he definatley cant ignore his bowels either.
sorry if i am wrong, but there are lots of us on here that remmember MG
 
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Sharon
there are loads of Crohnies who work! me for example, 40 plus hours a week!
maybe this doc is in good remission?
and maybe he's not stressed, that is an over generalisation that all docs are stressed!
 
I think this is amazing, and I wouldnt question it, just be grateful a doc is willing to do this!!!

BTW this has nothing to do with MG...
 
I have heard that my original doctor that gave me my LDN prescription had Crohn's, but I never asked him. Dr. Ayer of Burr Ridge IL, was his name. He was a pretty open minded doctor, but he was too far away from me to keep seeing.

I have Crohn's and work 60+ hours a week, and that does not count projects at home.

I think most people with Crohn's do work as anyone else, but some of the sicker ones certainly do not have that ability.

Dan
 
Dear Merrywidow, in answer to your questions:

1. My forum name is just that, I chose it over 20 years ago for my email handle and it has stuck ever since, so yes I am English but have spent over 20 years here in the U.S., but along with my partner we are moving back to East Yorkshire very soon for good. Initially it was to help look after my mum in her golden years, now as many of you know it will be to look after her and spend what time we have left with her due to her cancer, which has spread throughout.

2. Our dr, who this may sounds biased is an angel and very compassionate and has already agreed to participate in the interview with no problem. He himself was diagnosed with crohns 3 years ago so he not only has his dr view but also now his patient views on everything, right down to hospital treatment and believe me he does not get any preferential treatment just because he has DR in front of his name.

3. The work issue - well he manages to keep a full 4 day work week going, if he does get struck down with any part of his crohns he works from home and makes his patient calls from there, we've even known him call from his hospital bed!! He is truely dedicated to his patients. To top that off his wife is also very ill (ms) we understand and he still gets things done.

So, no matter what the interview is going to happen. It will be scheduled around not only the dr but also around us due to our impending trip back home for my mum. Actually both Colette and I are finding this project good therapy for us and we truely believe this project will benefit others.

Hope that answers your concerns..... everyone stay posted......

All the Best,

"The Girls"

Colette the crohny for 24 years and counting
Stephie the caregiver
 
Hey Stephanie and Colette,

I am just wondering ..have you considered videotaping this? I am asking because I searched youtube and there is very little info on there re: Crohns. People could also post additional questions after viewing the video. I dont know..just a thought.
Thank- you so much. I would like to know his spin on what he thinks caused Crohn's for him.
I have a lot of questions... some may be dumb but if I post some, maybe you two could decide which ones are more relevent.
I am wondering the relation to candida and Crohns -- before the diagnosis and treatments (not due to antibiotics, steroids, cancer treatment etc.)

Merrywidow. I dont know what happened with MG but sounds like this person was a tourist...
I have been reading their posts and they have explained re: US and England... sound all legit to me. I also know a doctor who had stage 4 cancer and worked right up to the week he died. He taught at my university and nobody knew so when he didnt return after school break, the class was very shocked. Our TA had to take over for him until someone new was hired in the interim.
I can understand your hesitancy though if someone on here has posed as someone they are not in the past.

Wendy
 
Sounds like a cool idea to me. Since I'm a pre-med student with Crohn's and all, I'm curious to know how he handles manages the job/disease and stuff. :)
 
Not to derail the thread or anything, because I'm also interested in reading the interview, but my GI doctor also has Crohn's. I don't particularly think it gives him all that much of an advantage in treating patients as you would think though, because as we all know everyone deals with Crohn's differently and responds to treatment differently. Things that work for him that he's given to me haven't had results, and vice versa.
 
Dear btbam11 - thanks for your honesty and info about your dr. We all know this is an individual disease but we figure the more information we can gather and pass on maybe it will help someone, even if only one person. there are no claims here that our dr is a miracle worker or that what treatment he uses would work for you, but you never know. He is the kind of dr who treats each patient individually as he does himself. everytime we see him it's a q&a session along with treatment for all of us. So all we ask is that people keep an open mind and hopefully people with benefit from this interview, if not at least we gave it a shot.

Kind Regards,
The Girls
 
Keona said:
Merrywidow. I dont know what happened with MG but sounds like this person was a tourist...
I have been reading their posts and they have explained re: US and England... sound all legit to me. I also know a doctor who had stage 4 cancer and worked right up to the week he died. He taught at my university and nobody knew so when he didnt return after school break, the class was very shocked. Our TA had to take over for him until someone new was hired in the interim.
I can understand your hesitancy though if someone on here has posed as someone they are not in the past.

Wendy
Click to expand...

keona,
my husband worked when he was dying from cancer. cancer and crohns are totally different.
mg wasnt a tourist , she was a total and cruel liar. and she sucked us all in.
i still stand by what i said though.
 
Yes please. I'd be very interested in reading the interview. Quite a unique situation. Reminds me a little of Dr jill bolte Taylor, the neuroscientist who ended up having a stroke and studied herself from the inside out as a patient. I hope your dr. is able to teach or speak to other doctors as his/her knowledge/experience is unique and could only benefit patient-doctor interactions.

And good luck with your move and reintegration to the UK! Have a ribena for me!

ukstephieandcolette said:
Ok, so this is a question for everyone.

Do any of you actually have a doctor that treats you that actually has Crohns?

Guess what - we do!!!!!!

So we thought it might be interesting and beneficial to do an interview with ours and post it on the forum realting to our disease as both a doctor and patient. If this sounds like something you would all like to read, please leave your comments on this thread.

Thanks,

Stephie - the caregiver
Colette - the crohny for 24 years and counting
Click to expand...
 
Hi all -thanks to everyone for the comments and interest. keep watching this site for updates. We will have one important one for you all sometime later tonight.

All the best,

The Girls
xoxo
 
Hi guys - sorry we're a day late with some info but here it is.

Starting July 5th we are giving everyone 30 days to send in any questions, problems, or anything else they would like us to ask our dr. We are allowing this time due to not only his schedule but also ours. As many of you know we are dealing with my mum and her cancer, but even though we will be travelling to England in the next few weeks we will be taking care of the interview even from there, compiling and then finalizing it.

And Keona, yes there will be a video!!!! so please all stay tuned, keep the faith and let's see what we can accomplish.

Best Regards,
The Girls
 
Yes, merrywidow...my mother died of cancer and I am quite aware of the fact that Crohn's and cancer are very different. So then you can see it is not impossible with someone with Crohn's can work. Thanks for the clarification of Crohn's and cancer being very different though.

Tourist

An individual who takes part in certain activities or attends particular meetings because they are trendy or popular, usually without regard to whether or not such activities or the subject matter of such meetings interest or pertain to them at all.
"Marla Singer is such a f*****g tourist for attending multiple affliction-specific support group therapy sessions when she doesn't even have any of those diseases."


Weetbixkid.... I use to go to England every other year for a long time. I forgot all about Ribena ... my grandmother use to give me the blackcurrent kind.
 
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Keona said:
So then you can see it is not impossible with someone with Crohn's can work. Thanks for the clarification of Crohn's and cancer being very different .
Click to expand...

i did not say it was impossiable for someone to work with crohns, i said i didnt believe, and still dont, that this "doctor" has full blown crohns.

your very welcome, to my clarification about crohns and cancer.
 
Absolutely. We only learned of our 11 year old son's Crohns on 06/23/2010; I would definitely want to here what a Doctor who also has CD is doing for his/her treatments and nutrition.

Thanks.
 
--I would like to know his take on the correlation between IBD and bacteria overgrowth (candida, etc).
--I would also like to know the correlation btwn a woman's cycle and endometriosis and IBD..seems like a lot of women have both..why is that?. Maybe he could just ramble about it as I don't really have a specific question.

Thanks :)

If anyone has the answers to these questions let me know :) Then he can answer other more relevant ones.
 
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Ok people, before this gets into a slinging match, let's get ONE thing straight.
Our Dr. is a real qualified, certified doctor. When the interview is published it will in GREAT DETAIL explain his qualifications, who he is, what he is about etc....... and I'm sorry Merywidow but I take GREAT offense that you could even question either us or what we are tring to do for our worldwide friends crohns forum. For your information my mother has cancer and it hurts me personally very deeply the way you are responding to all of this. My mum who is riddled with cancer worked upto the last possible moment she could. My partner Colette who has very bad crohns worked upto the last possible moment she could. We are very well aware of the difference in diseases, in fact our dr deals with many cancer patients also, I'm sure he would be THRILLED to read your assessment of him and his "qualifications".

I'm sorry but if this is going to be your attitude to us, everyone on this forum, and those in the medical field who are willing to give their time to help others, then please do not involve yourself anymore with this thread.

To everyone else, I'm sorry for this outburst but during a time which is very hard for us right now, (oh and by the way MERRY, my mum has only weeks left), we are trying to do some good.

The Girls
 
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Ok everyone, let's have some peace now!
On this forum, we respect everyone's viewpoint, there is a freedom of speech, and sometimes things get took out of all proportion, and sometimes it can turn quite nasty.
We are striving to move away from all that, and are working hard to appease everyone, it's ok to express your opinions, but try to steer away from over generalisations and try to be a little diplomatic when ill people are involved, we are in this together, let's not divide into them and us mentality.
PEACE
now shake hands!!
xxxx
 
Hey Wendy!

I know the answer to your question about endometriosis, cos I was full of em!
Endos are cells that grow outside of the reproductive organs every month during menstruation and ovulation, they 'glue' themselves to other organs including bowels, bladder, liver and gallbladder, thus exacerbating Crohns and UC. Crohns inflammation causes the bowels to also 'glue' together, add this to endos, one 'sticky' mess! The actual cramping during periods and ovulation, and the cramping of natural peristalsis, when the bowel moves, are similar, in that they both contract. and if there are restrictions, like endos, instant agony! A laparoscopy will find endos.
That's why I had a hysterectomy, and had it all scraped away and cleaned up, thus reducing my Crohns symptoms.
Oh Happy Day!
xxx
 
It makes a little more sense to me now. Thanks Joan. I will PM you when I know what my questions are. I want answers just don't really know the questions yet.
 
can we all please keep an open mind regarding the interview which Stephanie & Collette want to post here, from their doctor?

Sharon - i understand that you, like many of us, remember the hurt and betrayal of that particular member you mention, but that is in the past, and we cannot afford to alienate genuine members now because of one person's action in the history of this forum.

if what Steph & Collette say is true, then the interview will make very interesting reading, and we may see a different slant on things - certainly worth reading in my opinion.

i'll be keeping an eye on this thread - if anyone has any issues about it they want to discuss with me, please pm me.
 
Cant wait you guys, it's a pretty amazing thing you two are doing for us. Thx soooooo much!! My dr is not a man of many words!
 
My doctor also has Crohn's (not my gastroenterologist though). It is funny as he was certain that I did not have Crohn's based on the symptoms I was having prior to being diagnosed. He also has children with Crohn's.

That is a great idea to interview him (I should have thought of that!)

My questions:

1) Did being diagnosed with Crohn's impact your decision to become a doctor or impact how you deal with your patients?

2) Have you read any more mainstream books about IBD or do you limit your research/reading to medical papers and work on the subject?
 
I will definitely be following your interview S and C. Getting info from docs is impossible w/o asking the right questions. I can't imagine a better group to write the most pertinent questions. Thanks!!!
 
Dear All - Just a heads up August 5th is not too far away, so please any questions no matter what they are please put forward so we can add to our interview with our doctor.
As explained before it will take a little time before the finished article is available, our doc is off to a conference and Colette and I are off to England for 3 weeks to see my mum and check on her cancer progress etc.... but we will be on line and in contact if needed while we are away.

All the best to everyone,

The Girls
 
Hi Girls,

Thanks for the update. I hope things are OK with your Mum and you have a safe journey. Will keep you in my thoughts and prayers. :hug:

Take care,
Dusty
 
Hi: I've been wondering when you'd be coming back around again! Safe travels, and take good care.
 
I have a question or two!

1) Do you feel like we're going in the right direction with immunosuppressants or do you think that something like LDN is the right way to go?

2) How big of an impact did your crohn's have on becoming a doctor?

3) In your opinion, is there anything that we can do, those of us with mild disease, in prevention of the more severe parts of the disease?
 
Thanks for the update! Cant wait to hear about your first interview!

Toni: you'd be surprised how many doctors have never heard of LDN. My Gi didnt but he wasnt against it. When I get my appt on the 23rd I Know he will give it to me, getting all the research together...it is my last resort!
 
Hey,
I hope you have a good flight. My thoughts are with you - visiting a sick mom is difficult. If I think of anymore questions I will add them :D
Don't forget to take care of yourselves !
Wendy
 
Hi All - thanks for the comments and well wishes. Right now due to certain circumstances we're heading off on our trip on the august 29th. I know it seems like this is going to be a long process but it's just the way time is working with us.

Anyhow, thanks to all of you for your patience, major thanks from my mum who knows all about you guys and is very touched at the well wishes sent her way from around the world. If she feels up to it she has even agreed to do a short "hello" video to you all to show her appreciation..

So friends, stay tuned, time will fly by. In the meantime all of you stay well.

All the best,

The Girls
 
That sounds awesome if he will join! So is the trip going to see your mom or going to the see the doctor? I'm slightly confused Lol. Anyways best of luck to you both and your mother!

I have one more question for the interview though!

Question: If we use IVIG treatments for those that have immune system disorders, such as CVID, why not treat Crohn's disease with IVIG treatments? The new theory about crohn's is that it is because of an underactive system as opposed to an overactive one, so in theory, shouldn't this be considered?
 
Hi Crohns08 - the trip is actually to visit my mother, althouth we speak every week it has been 10 years since I was back there. Of course this trip is not so much a vacation because of her cancer, it's more of a trip to make sure all is well and in order if you get my drift. The cancer has spread quite a lot and with my younger brother over there I need to be back home. Of course as with everything we are taking it one day at a time, my partner has pretty bad crohns as well so there is a lot to deal with.

Thanks for your question, keep them coming. We'll still be in touch on the forum while in England.

All the best,

Stephie and Colette
 
Crohns08 said:
3) In your opinion, is there anything that we can do, those of us with mild disease, in prevention of the more severe parts of the disease?
Click to expand...

I'd like to know this as well.

Hope the visit with your mum goes well, looking forward to seeing this interview!
 
Hi girls glad you're back:). I'd like to know your doctors thoughts on Stem cell therapy.

Hope your visit goes well. Sorry for the circumstances though. Best to both of you and your mom as well.
 

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