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09-12-2014, 03:31 PM   #1
baistuff
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From a Doc with CD

Hi,

I have lurked on this site off and on for a while now. Though I am not a very public person (not on facebook, twitter, instagram etc...) I felt as a practicing physician with Crohn's, I can try to give a patient and doc perspective on things, correct some misconceptions, and of course provide support. A few things to get started.

1) I read here a while back that people cannot imagine doctors having crohn's or UC. Well, I can tell you that I know MANY docs with IBD (even a GI guy,) with different severities, different experiences, different levels of success and frustration. I once asked a post op (for perforated diverticulitis) how she felt. she said "i'll never have gut like you, doc." if only she knew

2) I know some leading practioners and researchers in the IBD field. Your doctor is not hiding information from you, does not have some secret deal with drug companies, or want anything other than for patients to get better and do well. IBD is a very young condition in the big picture- until recently, some practicing docs were older than the recognized condition. Much is not known. Please never hold that against your doctor. We know what we know, we know there is a lot we don't know.

3) Just like there can be countless causes of heart failure, renal problems, etc... I believe there are many causes to idiopathic inflammation of the GI tract. Everyone is searching for THE cause, when in reality there are likely multiple factors which in the right host cause problems. The small bowel is not the large bowel, and even the large bowel in the cecum is a vastly different structure and ecosystem (and stool consistency) then say the sigmoid or rectum. IBD is an umbrella catch all that can manifest in phenotyically and histologically signficant differences from patient to patient. That's why we find some meds, diets, supplements work in some and not in others. It's no different than many other conditions. Some people's BP is controlled with a small dose of one med. Others stroke out being on max doses of multiple meds. Please dont' EVER preach to someone what they should or shouldn't do. Age, disease severity and location, other conditions, other meds, environment, etc... all play a huge role in one's disease state.

4) As for me, I went from having a perfect GI system to this nonsense in my last few months of residency. I took an antibiotic for bronchitis, combine that with little sleep in an ICU month, and boom- The fun started. After 7 days of diarrhea, with a negative C diff culture, I knew I had trouble. Called one of the GI fellows I knew- and was on the table getting scoped a few days later. Patchy, non-specific colitis.

I'll go through my journey in another post, but luckily I've had a pretty smooth ride the past 11 years. All I can say is I follow my doc's directions. Even though I am a board certified practicing MD, when I am a patient, I am a patient. I take notes, write questions down beforehand. Comply with instructions, follow up. If something changes, I notify my doc. I respect this disease a lot, fear it a little, fight it daily by going to work, being there for my patients, laughing a lot, playing sports, nagging my kids etc...

I know it's easy to say since I have (knock on colon) so far been on the mild side of the bell curve, but please hang in there everyone. No one deserves this disease, and no one knows the future. But keep smiling. There isn't much we can CURE in medicine, but a lot of things we can CONTROL. I really think IBD is something we WILL be able to one day control.

BTW- I will be happy to make general comments, but PLEASE do not ask me speficic detailed questions. Medicine is meant to be practiced face to face, not in cyberspace.

Best wishes to everyone. Since there is no cure, and I've never like the term remission, I wish everyone rapid and permament healing and control very soon.

Just a simple M.D.
09-12-2014, 03:52 PM   #2
Farmwife
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Welcome aboard M.D.

I think you bring up some very good points that we all need to remember.
To label all docs as uncaring or out to make a profit over helping the sick is an untrue assumption. Thank you for speaking (typing) up.

I hope you stay a mild case and enjoy good health for a long wile.
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I'm mom to............... Little Farm Girl 8 yr old
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09-12-2014, 04:09 PM   #3
Jay Woodman
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@M.D. Thanks for joining the Forum. I look forward to your contribution!
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Perianal Crohn's
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09-12-2014, 04:26 PM   #4
DJW
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Hi and welcome.
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
09-12-2014, 05:05 PM   #5
2thFairy
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Welcome to the forum! It is quite refreshing to hear your words.
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09-12-2014, 05:33 PM   #6
PatientlyMary
 
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Welcome and Hi!
A nice reminder that IBD can be as frustrating to our medical practitioners as it is for patients. Thanks.
09-12-2014, 06:28 PM   #7
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In the 10 or more years that I've known my doctor he has never once decided on a treatment without first discussing it with me, but this August he decided to put me on remicade after a colonoscopy die to my complaints of D for just over a year (since my resection). He saw a recurrence during that scope, I guess and decided.

He's not the type to just decide for me, so I know HE is as frustrated as I am.
__________________
~~
Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
09-12-2014, 07:45 PM   #8
sleepallday
Hi M.D,

Thank you for your post.
I completely agree. It really shouldn't be patients vs. doctors. We are all part of the big picture and while there might be some doctors out there not as great as others, you have to remember and respect the doctors that work endlessly to care for their patients.
09-12-2014, 08:22 PM   #9
tzvia
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I know Docs have our best interest in mind, and they want us to get better, but I find it infuriating when GI Docs refuse to talk about diet, or say Crohn's has nothing to do with diet. Obviously diet isn't the only factor, but I believe it plays a huge role. Docs should know about the most popular diets for people with IBD (like SCD and GAPS diet)
__________________
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

09-12-2014, 09:42 PM   #10
nogutsnoglory
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Welcome and thanks for sharing your words and story.
09-12-2014, 10:11 PM   #11
happyballerina
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As a pre-med student with a very recent Crohn's Dx, I appreciate this post a lot. I have been interning at a hybrid family practice/urgent care clinic under my own family physician who has been by my side through my entire Dx journey from day one; when the Dx finally came, I asked her if this is going to jeopardize my future career and she said absolutely not! Hearing that repeated again from my GI doc and then from you makes me feel so much better. To know that there are many practicing docs out there with IBD is absolutely encouraging.

I am starting Humira soon and my mentor/physician has "banned" me from interning during the weeks of my loading doses (as we function partly as an urgent care clinic, we see maybe 3 patients a day who are not sick - so I would be a great target for all the germs waiting for a candidate to jump on)! I am upset because I love my clinical days, but I can appreciate the reasoning behind this. I don't want Crohn's to affect my career, but if it has to then I hope it will do so minimally.

Anyway - thank you very much for your post! It's so great to know someone else on the board who practices in my future profession Best of luck with your IBD!
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21 years old

Dx IBD August 22, 2014
Dx Crohn's Disease September 10, 2014

Current IBD meds: Entocort, Humira
Past IBD meds: Rowasa

Future doctor
09-12-2014, 10:47 PM   #12
Pilgrim
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Hello! I have found it amazing since my daughters diagnosis a few months ago, that we have worked with not one but two physicians with IBD, each had his colon removed.

As a parent of a child with Crohn's, it was a relief to know that these physicians working directly with my child not only understood the situation intellectually, but empathized completely.

What is more comforting than to sit and listen to your 3 year old compare the relative merits of the different flavours of Boost with her doctor? Or that the person prescribing an immune modulator is currently immune modulated? It inspires confidence.

Anyway, I wanted to tell you that it is a great gift to patients to know what you have gone through with your illness. If you do sometimes share that information with your patients, please know it is appreciated!
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
09-13-2014, 12:42 PM   #13
Asher
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Thank you. I really needed to hear this.
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Crohn's diagnosis: 9/2014

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Lialda 800mg (3x)
Remicade (started 12/2014)

Past Medication
ASACOL HD 800mg

"Be Joyful in Hope, Patient in Affliction, and Faithful in Prayer"
- Romans 12:12
09-13-2014, 01:37 PM   #14
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Many thanks for your post. I am in the UK and have a fantastic medical team who I work with. I have had two emergency admissions in the past two weeks and have just started Infliximab, which I think is working. But I have either stomach ulcers or gastritis from past medication which we now need to sort out. I have always felt my doctors worked with me and the specialist nurses we have here in the UK are knowledgeable and easily accessed which is very reassuring. It is a scary illness because it is always hard to know if any decision made is the right one, be it over diet, supplements or medication. This forum helps us all when we are at our lowest and anything encouraging, such as your post, is most welcome. Liz
09-13-2014, 03:06 PM   #15
Honey
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Hi there and welcome M.D.
I have often pointed out that we are individuals and our response to treatment is such too. I was not diagnosed with Crohns disease until three years ago when severe tummy pain took over. After failing many drugs with adverse side effects, Remicade reduced the inflammation ie until I ended up in hospital with a lung infection. I did not want to go back on this and then out of the blue, there has been a lot of healing. I am doing well just now without meds, and pray that this may last!
So thank you for your comments. I have nothing but praise for the medical profession. My Consultant has treated me as an individual, with individual needs. Keep as well as you can. Best wishes.
09-13-2014, 03:52 PM   #16
littlemissh
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Another doc here with IBD, though in the UK and more at the severe end of the spectrum and I agree with what you say MD. I think that there is a lot of misunderstanding as regards IBD and its treatment in the medical profession, but it is not that docs don't care, it is just that we are not taught well on the finer points of the subject, I don't feel it is lack of care/compassion, just lack of knowledge. We can't know everything about everything, but must be prepared to learn.

I have made it my mission to educate my colleagues (have become a bit of a soap box preacher with regards to IBD) both as a patient and also a doctor (I am not a gastroenetrologist but I do have a role in education). Mostly they are receptive and my hope is that it will help their other patients care.

One thing I would ask you all. I never know when I see a patient with IBD whether I should share that I have it and so can empathise. Will the patient feel uncomfortable with my sharing or would they feel more at ease?? Do you tell anyone MD??, obviously from some of the threads some docs do. The other thing is I may worry people as I consult with an NJ tube and this may make people worry it may happen to them...
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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09-13-2014, 04:17 PM   #17
Pilgrim
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When our first GI told us about the removal of his colon, he made certain to let us know that it doesn't happen to everyone. It was good to know that he was able to go through med school with the surgeries happening concurrently. Instead of scaring us, it actually gave us hope that even if things ended up getting quite complicated for our daughter in the future, that she could still work towards whatever her goals are.

Our other doctor with IBD is married with a beautiful family, and it's also good to know that after surgery, it is possible to go on to family life if chosen.

Both of these docs chose to share the information and we are grateful.
09-13-2014, 05:34 PM   #18
2thFairy
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One thing I would ask you all. I never know when I see a patient with IBD whether I should share that I have it and so can empathise. Will the patient feel uncomfortable with my sharing or would they feel more at ease??
I always feel more at ease when a doctor can tell me something about themselves that I can relate too. When I had my doubts about the positives of having a colectomy, my GI told me about one of his golf buddies who is a surgeon and has an ileostomy. It gave me a better perspective about how having a stoma doesn't mean the end of a job or the end of a life you enjoy. It made a lasting impression to realize that someone I respected didn't think it was a bad or disgusting thing.

I think for you to share with your own patients that you have IBD lets them know you really do understand and also that it there will be better days. (Because if you are seeing patients, then you aren't sick in bed, etc.)
09-13-2014, 08:49 PM   #19
baistuff
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Interesting points from everyone here.

I usually do not share my CD with patients, as I don't want their visit to be anything other than about the patient. If a patient fears a colonoscopy I will tell them it is no big deal and that I have had several. I will gladly share personal things with patients so they can feel at ease (number of kids, where I went to school, sports teams I like etc...) but, just my opinion here, I don't want to give patients the impression I am not focusing on their issues. Keep in mind, I am not there to be my patients' friend. I am not there to shoot the breeze, or play comedian. Yes, there should be comfort and ease, mutual respect, and sure, some friendliness. But your doctor visit is not a social visit.

Another person brought up diet. Doctors mostly do indeed believe diet has an impact on many medical issues- Kidney, liver, heart disease, and yes, of course with IBD. But what that means is different for every individual. Medicine must be evidence based. Right now there is not much peer reviewed, reproduced evidence as to WHAT diet is right. Can I really in good faith tell a patient to cut out every carb, possibly lose more weight, get ketotic which may harm their kidney and liver, foster even more social isolation, all because some people report they improved on SCD? Were they scoped and biopsied? How long should they be on that diet? What are the follow up criteria? Non specific blood markers? FC? How do we know that the natural course of ups and downs with IBD are not playing a role? Or other environmental factors? (more on this in another post.) Maybe the person who did full SCD only needed to cut out gluten? or artificial sweeteners? How can you really know without prospective, double blind controlled, peer reviewed research? And tell them all just to read a book based on a 5 year old being cured? Is a 5 year old with UC the same as a 40 year old with a small bowel stricture or fistula?

I am not assailing SCD or other diets. No question the anecdotes mean it needs attention. What I am trying to explain is why docs cannot jump on a bandwagon that may hold some water, but may not be accurate. We need more research and insight, not anecdotes that can have various other explanations ranging from luck, placebo effect, to perhaps actual efficacy.

So in short doctors believe diet is indeed important. We just don't know what about diet exactly is. Trust me, I'm there with you all. I've dabbled in a lot of these trying to find the right combo. But while it's OK for me to throw things at a wall and see what sticks for myself, that cannot be the standard of care for the medical profession in its approach to IBD.

Healing and control to everyone!

M.D.
09-13-2014, 08:57 PM   #20
DJW
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M.D., I'm very happy you've decided to join this community. I look forward to your posts.
09-14-2014, 09:31 AM   #21
If*
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I know Docs have our best interest in mind, and they want us to get better, but I find it infuriating when GI Docs refuse to talk about diet, or say Crohn's has nothing to do with diet. Obviously diet isn't the only factor, but I believe it plays a huge role. Docs should know about the most popular diets for people with IBD (like SCD and GAPS diet)
Possibly the poster had experienced where the Dr. refuses to entertain the role of 'diet' with IBD. Since some are told 'diet' has no effect on the course. At some point with IBD, diet & nutrition can become so in your face 'the elephant in the room' that it has to be addressed. It is hard not to wonder had it been addressed prior to becoming an issue could certain deficiencies, symptoms been avoided? In a nut shell, why doesn't a Dr. recommend nutritional support via a nutritionist ~ especially if it is not in the Dr.s realm of knowledge? Proper Nutrition is huge with an illness that effects the digestive system and that should be common knowledge, addressed, taught with some form of support.

your thoughts...
09-14-2014, 12:10 PM   #22
littlemissh
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In the UK, the guidance states that patients with Crohn's should have a specialist dietician as part of their treating team, is this not the case in the States.

MD, I wouldn't be telling a patient about my diagnosis so that I can be friends with them, simply to make them realise I understand their condition and probably worries first hand. All the evidence shows that a good therapeutic relationship between doc and patient leads to better compliance, understanding and outcome. This is where I am coming from. It would only be in fairly rare circumstances where I think that there would be some benefit. Perhaps I'm wrong?
09-14-2014, 12:33 PM   #23
darster
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I think you both have it right.
09-14-2014, 01:50 PM   #24
valleysangel92
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Welcome to the forum M.D and thankyou for sharing your perspective.

I've been on the receiving end of both poorer care and amazing care. I know it is never a doctors intention to make someone feel horrible or mistreated but unfortunately it does happen. At my last hospital stay I had to really fight for treatment at first because the oncall doctors were refusing to give me treatment other than pain meds, which thankfully was over ruled by the night doctor that knew me from a previous admission and then I was placed under a brilliant gi who I have since stayed with. I think it's hard for patients not to take it personally when some doctors seem either to not be taking them seriously or not know what to do.

Of course doctors are human and it's definitely important to remember that, so having input from a medic with IBD will definitely help people. I think it's easy to forget that doctors have outside lives too and sometimes they just have a bad day or don't quite remember you and your case, it's not on purpose and it's not personal. However, I had a doctor tell me last year that I was 'cured ' after my surgery, and he made a statement to the same effect in my notes. That then had an impact on my care when I needed to go to hospital, since the on call medic didn't know me, he skimmed my notes and saw that, and decided I just needed to be kept in for pain killers and kept an eye on. I had to really fight to convince him that I needed tests and treatment, not just pain killers. I shouldn't of been in that position, it's very intimidating for a 21 year old to tell a consultant the facts, but I respect that the doctor in question was simply working on the information he had right in front of him, he didn't have the time there and then to read through 7 years worth of medical history, but at the time it was difficult and frustrating, and that's the kind of situation that results in some members feeling like doctors either aren't interested or don't understand etc.

Please know that we do know that in reality the vast majority of doctors are very good at what they do and want to help their patients and that even though they can frustrate us, they are doing their best.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
09-14-2014, 02:54 PM   #25
pink&green
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Welcome to the forum and thanks for sharing your story.
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Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
09-14-2014, 06:07 PM   #26
Axelfl3333
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Hello md and welcome to the club no one wants to join.you have a fairly common possible reason crohns kicked off stress,to many hours and got sick and crohns appeared on the scene it's pretty common way for it to show up.hope you get well all the best
09-15-2014, 11:17 AM   #27
UnXmas
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I've never thought doctors are intentionally keeping people chronically sick to make money out of them, or withholding information about diet because drug companies can't make money from it. In the UK the government wants as little as possible spent on healthcare and so want people healthy. So the conspiracy doesn't really fit here.

What I don't get is why so many doctors seem determined to diagnose IBS rather than IBD. I had this happen so many times, and have read of so many people experiencing the same. Why is the default to diagnose IBS without performing any tests?
09-15-2014, 11:25 AM   #28
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Welcome to the forum! Look forward to your posts.
09-15-2014, 11:47 AM   #29
baistuff
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Perhaps this should be in a different thread, but I promised some comments on FMT and here goes. This is not results based. I am doing well, but then again, wasn't so bad at the time it was done. This is more about FMT decision making.

1) I had an FMT 3 monts ago as part of a clinical trial. The decision to do it was a joint one with my GI, who of course could not guarantee anything and wasn't going to be involved, but did agree with my hx/o dysbiosis and antibiotics as a trigger that it was worth a try. I knew full well this was experimental. Had my GI not been OK with it, I probably would not have done it. IOW- do NOT make a unilateral decision.

2) FMT should NEVER be done at home for many many reasons. The current FMT protocol starts with a spray of liquid stool from the Ternimal ileum to the splenic flexure. To put X amount of stool only on the left side of the colon via some squirter is really not a good idea. Stool is a biohazard, cannot and should not be handled by anyone other than a professional in a controlled enviornment. Performing a procedure with stool in one's bathroom is asking for trouble. Also, it is best to visualize the colon prior to doing the transplant. Only with a colonoscope can this be done. I guess if one is in the hospital with an NG tube and recently had a colo, that would work, buy why introduce the upper small intestine, which never actually has stool in it, to stool?

3) Contraray to popular belief, I would NOT use a family member or close friend as a donor. Whether it is diet, environment, or (in the case of a non spouse) a family member- there is some aspect of IBD which is genetic/diet/environment related. Why use stool with at least a somewhat similar anything? Luckily, in the studies, the donors are tested, screened etc... so risk is minimal. But in addition they use the same 1 or 2 donors for everyone in the studies so at least one variable (the donor) is controlled. In all these anecdotes all over the place, do we REALLY know the diet, habits, etc.. of the donor?

4) Keep expectations realistic. FMT cannot correct the host defect IBDer's have. In a best case scenario, besides the bacterial balance, I think the best hope is that like jumping a car battery, the stool and new host ecosystem resets the immune system. However, that is likely a real stretch, and even if it does, is likely not permanent.


In short, at least for those of us in the US, if you are interested in FMT my suggestion is talk to your GI first, and if agreed that it is worth pursuing, find a clinical trial. There are many. The decision should be grounded in science, NOT made out of desperation. In a trial, the entire process from screening, to the procedure, to the follow up monitoring is rigorous and controlled, much more than anything anyone will find at home. In the latter you get cousin Tom running from one bathroom with his poop in a blender while you sit on plastic with your feet up on a bathtub and a syringe hanging out clueless as to what is happening macro and microscopically in your colon, completely unsure as to where the injected poop will end up (likely on your toothbrush.)

Just one opinion.
M.D.
09-15-2014, 12:41 PM   #30
RickUK
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M.D. What are your thoughts on the Faecal Calprotectin test? (if you're aware of how it works) seems to be quite well thought of in terms of differentiating between IBS and IBD due to it's reliability in picking up inflammation in the GI tract
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