• 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.

From a Doc with CD

B

baistuff

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:thumleft:

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.
 
Farmwife

Farmwife

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.
 
IofNewt

IofNewt

Location
NDG, Montreal, Quebec, Canada
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.
 
S

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.
 
tzvia

tzvia

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)
 
happyballerina

happyballerina

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!
 
Pilgrim

Pilgrim

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!
 
EW8

EW8

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
 
Honey

Honey

Moderator
Staff member
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.
:rosette1::welcome::rosette1:
 
littlemissh

littlemissh

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...
 
Pilgrim

Pilgrim

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.
 
2thFairy

2thFairy

littlemissh said:
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??
Click to expand...
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.)
 
B

baistuff

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.
 
DJW

DJW

Forum Monitor
M.D., I'm very happy you've decided to join this community. I look forward to your posts.
 
I

If*

tzvia said:
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)
Click to expand...
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...
 
littlemissh

littlemissh

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?
 
valleysangel92

valleysangel92

Moderator
Staff member
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.
 
A

Axelfl3333

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
 
UnXmas

UnXmas

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?
 
B

baistuff

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.
 
R

RickUK

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
 
B

baistuff

RickUK said:
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
Click to expand...

For differentiating IBD from IBS it is actually pretty useful. However, other conditions which will cause white cells, particularly neutrophils to infiltrate the bowel wall can also cause high FC (infectious colitis including C diff, bacterial and even severe viral illnesses; ischemic colitis- usually seen in older folks; acute diverticulitis, and of course cancer. IBS should in general not cause an increase in FC. if the result is borderline it may not be too useful.

As with most labs I don't like looking at in a vacuum. Following a trend, or knowing what someone's baseline in is very important. A hgb of 13.5 is normal by most standards, but if someone normally runs at 16, 13.5 would still be a noteworthy drop. Same with a lot of these markers, including FC, and also ESR and CRP which can drive docs and patients nuts- 2 important inflammatory markers which are neither specific (can be elevated for various causes) nor overly sensitive (many people with active inflammation may not have elevations.)

So in a nutshell, good test for IBD vs IBS, but certainly needs context, ruling out of other acute causes and trending over time to increase its usefulness.

M.D.
 
R

RickUK

M.D. said:
For differentiating IBD from IBS it is actually pretty useful. However, other conditions which will cause white cells, particularly neutrophils to infiltrate the bowel wall can also cause high FC (infectious colitis including C diff, bacterial and even severe viral illnesses; ischemic colitis- usually seen in older folks; acute diverticulitis, and of course cancer. IBS should in general not cause an increase in FC. if the result is borderline it may not be too useful.

As with most labs I don't like looking at in a vacuum. Following a trend, or knowing what someone's baseline in is very important. A hgb of 13.5 is normal by most standards, but if someone normally runs at 16, 13.5 would still be a noteworthy drop. Same with a lot of these markers, including FC, and also ESR and CRP which can drive docs and patients nuts- 2 important inflammatory markers which are neither specific (can be elevated for various causes) nor overly sensitive (many people with active inflammation may not have elevations.)

So in a nutshell, good test for IBD vs IBS, but certainly needs context, ruling out of other acute causes and trending over time to increase its usefulness.

M.D.
Click to expand...

Thanks for the reply. Thought I'd get your opinion as my calprotectin level came back at 742, and with 50 being normal I'm now suspected of IBD. But having had my results beginning of August, and with generally feeling quite well the last sort of 5 weeks I'm "guessing" the inflammation will more than likely no longer be present?
 
B

baistuff

RickUK said:
Thanks for the reply. Thought I'd get your opinion as my calprotectin level came back at 742, and with 50 being normal I'm now suspected of IBD. But having had my results beginning of August, and with generally feeling quite well the last sort of 5 weeks I'm "guessing" the inflammation will more than likely no longer be present?
Click to expand...
There is an old saying in medicine, "tissue is the issue." Scope and biopsy. No lab will tell you as much as a biopsy. Good luck.
 
LodgeLady

LodgeLady

Thanks MD for joining this forum. I have had mixed experiences with GI docs, and GI specialists. One thing I have determined is each has their own management style. This makes receiving treatment very frustrating. Some practice top down management, some bottom up. Sometimes the data can be inconclusive despite obvious symptoms. All of these variables and the different approaches to treatment are what makes this disease so frustrating.

Of all the qualities that go into finding that "right" doctor, communication is the biggest one. We all, doctor and patient , need to keep talking to each other. Once that relationship is forged the beginning of successful IBD management begins.

Thanks for your story. This awful disease spares no one. We will keep you in our prayers.
 
dave13

dave13

Forum Monitor
Location
Maine
Welcome

Thanks for coming out of the 'weeds' and contributing. I hope you don't get chased away.

Lots of love/hate relationships with docs here.The incompetent ones stand out in our memories and stories.

I could blister your keyboard from here with my feelings for my first GI that misdiagnosed/ignored my fistulas.

I do find it hard to believe that the medical community repeatedly makes a blanket statement that diet does not matter. My personal experience is quite different.

My current GI and colorectal surgeon are awesome.Open,blunt,encourage patient involvement and questions,etc.They explain everything with patients and understanding.I have a notebook I write questions in between visits and they answer each question.I can sense their passion for what they are doing.

Even got the the 'old standby' when you get in that humiliating and vulnerable position "now I recognize you". Maybe you had to be there,but it was funny. :)

Welcome
 
B

baistuff

No question that like in every profession and every walk of life there are those who are smart, kind, caring, and those who are quite the opposite. Sometimes it's just the personalities don't mix. There is nothing wrong with that. Simply switch docs.

The only other thing I will add is, yes, switch docs if they are tuning you out, not being thorough, hard to get a hold of, or don't communicate well. Don't switch b/c they didn't treat you with worms b/c your read on the internet someone got "cured" with it.

As a non IBD example, one of my closest friends ( of course a lawyer) calls me recently and asks me to suggest a new internist- wants to leave his doc (a good one whom I know well) after 10 years.

"why are you leaving?"
"he didn't do an EKG at my last physical" (age 41)
"are you having chest pain, palpitations, trouble breathing, dizziness?"
"no"
"have you ever had an EKG"
"yeah, he did one last year as a baseline."
"was it normal?"
"yes."
"so why do you think you need one?"
"Just to be sure."
"of what?"
"well, if we were really thorough, he would do one."
"sorry, your doc has nothing wrong or out of standard of care. He is taking very good care of you. If you want to start with a new unknown MD, that is your business."

So, there is nothing wrong with changing docs. Just make sure it's for the right reason. Also, if you call or email a doc with the SAME question over and over, simply hoping for a different answer, don't be surprised if you don't get an answer after a while. We docs like any other human do have our limits. That to me is not tuning a patient out or not communicating. That's the doc's way of saying, enough is enough- I've answered you.

M.D.
 
UnXmas

UnXmas

dave13 said:
I do find it hard to believe that the medical community repeatedly makes a blanket statement that diet does not matter. My personal experience is quite different.
Click to expand...
Mine is too. One of my gastroenterologists, also a nutrition specialist, suggested I try the FODMAP diet, as she thought I might have a bacteria overgrowth. I didn't try it, because it was only based on her theory, and I've not got on well with restrictive diets in the past - I ended up scared of eating "bad" foods, and my diet is already restricted due to being unable to tolerate much fibre. The doctor accepted my refusal, and didn't press it. (As it turned out, they later treated with me with masses of antibiotics for something else, and told me that if I did have a bacteria overgrowth, I would have felt better after the antibiotics, so they concluded that I didn't.)

My doctors, dieticians and stoma nurses have all advised me about diet - they support me in following a low fibre diet, told me which foods could block my stoma and which slow down and speed up output. Lately, after a surgery, they kept me on total bowel rest (on TPN) then guided me back to a liquid and then a soft diet, and now I'm eating a regular low fibre diet again, they're prescribing me supplements for extra calories and vitamins, etc.

So basically, they take nutrition very seriously, but do so in ways that are based on known facts about nutrition, things that are supported by scientific evidence. They definitely don't ignore diet or tell me it doesn't matter, far from it. I think if there was similar evidence supporting SCD, they would recommend that also, if appropriate.
 
David

David

Co-Founder
Location
Naples, Florida
Hi M.D. and welcome to the community. We're glad to have you. Various things:

1. I notice you said your biopsy came back as non-specific colitis and that you've had a, "Pretty smooth ride" since then. At some point was your diagnosis changed to Crohn's disease? If so, was the new diagnosis confirmed via biopsy?

2. I dislike the word remission as well, but I worry about the subjective nature of your, "Healing" and "Control" and wonder what your issue with the word is? My personal issue is that the word remission is thrown around without the all-important preceding word. I would love to see medical providers and patients begin to use:
- Clinical remission
- Biochemical remission
- Endoscopic remission
- Deep, Stable remission

I'm happy for someone who was flaring who achieves clinical remission, but it is not enough. Once they reach biochemical and endoscopic remission, I'm even happier. But until they reach deep, stable remission, then I am not satisfied with their treatment regimen, diet, and lifestyle changes.

3. I appreciate you giving a doctor's perspective. In some ways, I feel bad for gastroenterologists. Crohn's disease and other IBD are such incredibly complicated diseases. I have been studying them for years now and still have so much to learn, especially with the new data and treatments coming out all the time. We expect our GIs to be specialists in IBD and yet they also have to be specialists in every other disease and disorder of the digestive system. It's just plain not possible and I imagine it is overwhelming for many. This is part of the reason why I feel forums like Crohnsforum.com can be integral to people with IBD. If communities like this one are run well, they can play a very important role in helping patients ensure they are getting the treatment they deserve as well as helping disseminate information to medical providers.

4. Like it or not, you're going to be asked specific medical questions with the username you've chosen. I am aware of quite a few medical doctors and a couple GIs on this forum, but all have chosen either upon registration or at a later date to use a non medical username. Some divulge that they are a doctor, others keep in more private. If you don't want to be asked specific medical questions, my suggestion would be a username change. You can PM me for that.

Again, welcome to the community. :)
 
B

baistuff

Hi David,

All great questions/points. see below.




David said:
Hi M.D. and welcome to the community. We're glad to have you. Various things:

1. I notice you said your biopsy came back as non-specific colitis and that you've had a, "Pretty smooth ride" since then. At some point was your diagnosis changed to Crohn's disease? If so, was the new diagnosis confirmed via biopsy?



*** I am not 100% of the CD dgx, and in reality may be a variant of UC.

Keep in mind I went from 0 to 60 with IBD. went from perfectly normal to IBD very quickly, diagnosed very quickly. Initially there were skip areas, but the slides were purely mucosal inflammation and some crypt distortion. So CD b/c of the skip lesions or UC based on histo? or even infectious? hence IC. Good response to flagyl and VSL3. A couple of follow up scopes over the years and all fine. And all this on no meds. In 2013 when more symptoms started the inflammation was purely right sided. Left side clean- hence the CD conclusion. But again on histo it's purely mucosal, no metaplasia or anything else to suggest CD. So phenotypically it's officially CD. ANCA/ASCA negative. But IMHO it doesn't really matter. idiopathic inflammation of the colon is what it is, everything else is semantic. The cytokines, WBCs, bacteria and immune system don't really care what academic humans call them. They will do what they will do. My symptoms at worst were really pretty simple- diarrhea, urgency. Not frequent though. only mild infrequent discomfort- wouldn't even call it pain. no blood, no mucous or undigested anything. Never nocturnal. I try to keep everything as normal as possible. I work-sometimes really long crazy hours, I try to exercise, yelp at my kids to do homework, to get out of housework, try to sneak in football on TV when I should be doing house projects. IOW I try to be the average American male.




2. I dislike the word remission as well, but I worry about the subjective nature of your, "Healing" and "Control" and wonder what your issue with the word is? My personal issue is that the word remission is thrown around without the all-important preceding word. I would love to see medical providers and patients begin to use:

- Clinical remission
- Biochemical remission
- Endoscopic remission
- Deep, Stable remission

*** I'm an evidence based guy. The subjective and biochemical measurements need context, and knowledge of baseline and understanding if something else can be going on. IBDers get food borne and viral illnesses too. Labs can be off or good for many other reasons. Sure, we need to know how patients feel, and labs are important, but there are limits to what can be known. That being said, it's not practical to scope someone for every bump in the road, and imaging is expensive, limited, and in the case of CT's expose patients to way too much radiation. No good answer.




I'm happy for someone who was flaring who achieves clinical remission, but it is not enough. Once they reach biochemical and endoscopic remission, I'm even happier. But until they reach deep, stable remission, then I am not satisfied with their treatment regimen, diet, and lifestyle changes.


*** agreed. The problem again is chasing the evidence. Not practical to constantly scope and biopsy. And for the person who feels OK, but has some evidence of activity.. what to do? escalate meds and risk short and long term side effects to accomplish what? prevent a stricture or cancer that may not happen anyway? Hard to know what to do.

3. I appreciate you giving a doctor's perspective. In some ways, I feel bad for gastroenterologists. Crohn's disease and other IBD are such incredibly complicated diseases. I have been studying them for years now and still have so much to learn, especially with the new data and treatments coming out all the time. We expect our GIs to be specialists in IBD and yet they also have to be specialists in every other disease and disorder of the digestive system. It's just plain not possible and I imagine it is overwhelming for many. This is part of the reason why I feel forums like Crohnsforum.com can be integral to people with IBD. If communities like this one are run well, they can play a very important role in helping patients ensure they are getting the treatment they deserve as well as helping disseminate information to medical providers.


***we need to keep in mind that IBD is younger than some MD's still alive. We also need to keep expectations realistic. I've had patients tell me they were "cured" of heart disease after a stent, cured of IBD after a partial resection. We expect docs to know and cure everything when in reality, that isnt' happening. Anytime I hear the word cure with IBD I laugh. It aint happening anytime soon. People expect a cure for something we don't know the cause of, why its incidence is rising everywhere, and still have a lot of trouble diagnosing. Like with IT, house issues, or anything else, FIXING a problem means understanding root cause first. BUT... we may get very good at controlling it, and preventing complications. Harsh? maybe, but for me, understanding reality has been really helpful for coping. I don't wake up pining away for the latest breakthrough. I expect to have a lifelong condition with ups and downs and over time hopefully our understanding and ability to heal or control this disease improves. So far, no complaints.


4. Like it or not, you're going to be asked specific medical questions with the username you've chosen. I am aware of quite a few medical doctors and a couple GIs on this forum, but all have chosen either upon registration or at a later date to use a non medical username. Some divulge that they are a doctor, others keep in more private. If you don't want to be asked specific medical questions, my suggestion would be a username change. You can PM me for that.


***Nah....it's ok. I have my own rules for what I answer. General stuff about labs, symptoms, terms- no problem. It's the direct ("what should I do") that for many reasons I can't and should not answer. I understand the wanting to know, even the desperation here among the hardest hit here. But I'd be doing a disservice giving specific direct advice over a computer screen. But the general stuff? I'm happy to weigh in. I'll be fine:thumleft:


Again, welcome to the community.
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David

David

Co-Founder
Location
Naples, Florida
Hey M.D.,

Thanks for the response.

First, let me say that the tone I am using when discussing all this with you is conversational like we were across the table from each other having a beer. I thoroughly enjoy talking about this kind of stuff but know how easy it is to misinterpret tone on the internet.
David said:
Hi M.D. and welcome to the community. We're glad to have you. Various things:

1. I notice you said your biopsy came back as non-specific colitis and that you've had a, "Pretty smooth ride" since then. At some point was your diagnosis changed to Crohn's disease? If so, was the new diagnosis confirmed via biopsy?
M.D. said:
*** I am not 100% of the CD dgx, and in reality may be a variant of UC.

Keep in mind I went from 0 to 60 with IBD. went from perfectly normal to IBD very quickly, diagnosed very quickly. Initially there were skip areas, but the slides were purely mucosal inflammation and some crypt distortion. So CD b/c of the skip lesions or UC based on histo? or even infectious? hence IC. Good response to flagyl and VSL3. A couple of follow up scopes over the years and all fine. And all this on no meds. In 2013 when more symptoms started the inflammation was purely right sided. Left side clean- hence the CD conclusion. But again on histo it's purely mucosal, no metaplasia or anything else to suggest CD. So phenotypically it's officially CD. ANCA/ASCA negative. But IMHO it doesn't really matter. idiopathic inflammation of the colon is what it is, everything else is semantic. The cytokines, WBCs, bacteria and immune system don't really care what academic humans call them. They will do what they will do. My symptoms at worst were really pretty simple- diarrhea, urgency. Not frequent though. only mild infrequent discomfort- wouldn't even call it pain. no blood, no mucous or undigested anything. Never nocturnal. I try to keep everything as normal as possible.
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I've read thousands of accounts of Crohn's disease and Ulcerative Colitis and once in awhile one makes my nose wrinkle a little. Obviously there are outliers but everything you've said makes me hope that I might be right and that you may not have Crohn's or UC. I also must say that I strongly disagree with you that a proper diagnosis doesn't matter. I think it is extremely important.

Do you think that, based upon your 2013 symptoms that you would have received a colonoscopy if you didn't have a previous diagnosis of non-specific colitis? Do you think your doctor might have waited to see if it was self-limiting or if OTC meds might help? How long was it between your very first symptoms and then the 2013 flare?

David said:
2. I dislike the word remission as well, but I worry about the subjective nature of your, "Healing" and "Control" and wonder what your issue with the word is? My personal issue is that the word remission is thrown around without the all-important preceding word. I would love to see medical providers and patients begin to use:

- Clinical remission
- Biochemical remission
- Endoscopic remission
- Deep, Stable remission
M.D. said:
*** I'm an evidence based guy. The subjective and biochemical measurements need context, and knowledge of baseline and understanding if something else can be going on. IBDers get food borne and viral illnesses too. Labs can be off or good for many other reasons. Sure, we need to know how patients feel, and labs are important, but there are limits to what can be known. That being said, it's not practical to scope someone for every bump in the road, and imaging is expensive, limited, and in the case of CT's expose patients to way too much radiation. No good answer.
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I agree that labs can be off for a variety of reasons, but hopefully someone with as serious an illness as IBD will have a doctor who found a baseline and then is monitoring trends. A couple outliers wouldn't affect that trend and I'm sure meds wouldn't be adjusted after a single reading. But if important markers such as CRP, FC, various iron studies, B12, etc that had previously been off are getting progressively worse, then I feel it is reasonable to conclude a patient in not in biochemical remission.

I agree 100% that you can't scope too often or do too many CTs. I know duration between scopes in IBD patients is up for debate, but in my opinion, it makes sense to check things out every few years to make sure there isn't chronic inflammation, to evaluate disease state, and confirm that we have mucosal healing if we have biochemical remission. I know many would disagree with me though and respect that.

I also understand and respect that it's much easier for me to be armchair quarterbacking this than having to do the actual scopes :)


David said:
I'm happy for someone who was flaring who achieves clinical remission, but it is not enough. Once they reach biochemical and endoscopic remission, I'm even happier. But until they reach deep, stable remission, then I am not satisfied with their treatment regimen, diet, and lifestyle changes.
M.D. said:
*** agreed. The problem again is chasing the evidence. Not practical to constantly scope and biopsy. And for the person who feels OK, but has some evidence of activity.. what to do? escalate meds and risk short and long term side effects to accomplish what? prevent a stricture or cancer that may not happen anyway? Hard to know what to do.
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Lots of potential variables there and obviously it would be a case by case basis. I agree it must be really hard to know what to do and I have substantial respect for the GI's who get it right most of the time.
 
B

baistuff

David said:
Hey M.D.,

Thanks for the response.

First, let me say that the tone I am using when discussing all this with you is conversational like we were across the table from each other having a beer. I thoroughly enjoy talking about this kind of stuff but know how easy it is to misinterpret tone on the internet.

I've read thousands of accounts of Crohn's disease and Ulcerative Colitis and once in awhile one makes my nose wrinkle a little. Obviously there are outliers but everything you've said makes me hope that I might be right and that you may not have Crohn's or UC. I also must say that I strongly disagree with you that a proper diagnosis doesn't matter. I think it is extremely important.

Do you think that, based upon your 2013 symptoms that you would have received a colonoscopy if you didn't have a previous diagnosis of non-specific colitis? Do you think your doctor might have waited to see if it was self-limiting or if OTC meds might help? How long was it between your very first symptoms and then the 2013 flare?
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***It was about 9 years. That doesn't mean every day in between was 100% normal. Just mild, sometimes popped a probiotic or adjusted diet with some good success.

There is no getting around the fact I had on 2 very different occasions, idiopathic inflammation in the colon, seen on scope and confirmed on biopsy. Both times the symptoms were not self limited, and detailed stool cultures were all negative. Although not textbook, it is still IBD. Time 2 I actually did pop a CRP (not overly high, but certainly above normal.) It wasn't too long ago that CD was though of as only affecting the SB "regional enteritis" but with the exponential increase in IBD cases we are seeing many non traditional cases on either extreme. Back when I trained CD was thought to start between 15-25 years old. Now we are seeing pre schoolers hit, and those over 50 hit, and sometimes hit hard.

IMHO dysbiosis in me triggers an immune response. Both times I was hit was winter ( I'm in a large northeast city,) had recent antibiotics, and times of physical stress (lack of sleep, crazy work schedules.) So far I have remained on the mild side of the bell curve, perhaps even off of it a bit. But who knows what the future holds? A poorly understood chronic condition in an aging organism, all bets are off. I try to get exercise, go to bed early, avoid antibiotics, and people may laugh at this- I try to get time in the sun (should start another thread on some of my crazy theories.)

As to our disagreement (and I very much respect your opinion,) I think UC and CD are simply convenient umbrella and sometimes overlapping terms we use to really describe one very large and ever evolving entity- Idiopathic chronic (or at least relapsing) inflammation of the GI tract. The macro and micro manisfestations can and will vary. What is my issue with these terms? UCers who have a "curative" colectomy only to years later have SB sxs. Using pigeonhole terms that may not be accurate. If I need a colectomy down the road, bc I have been assigned CD, by definition i get an ostomy, b/c it's CD- even though no evidence of SB involvement and the histo looks more UCish. And why? because the inflammatory mediators in my gut aren't following the rules that they MUST start in the rectum so it has to be CD? Why are we trapping ourselves to outdated terms coined decades ago for a disease which has evolved so much since then?

It's a fascinating topic for sure.
 
nogutsnoglory

nogutsnoglory

Moderator
I don't think it's fair to lump UC and CD together as one disease. They are very similar, in many ways almost identical but there are key differences. There are some that are indeterminate or misdiagnosed and may be the cases you mention who even after a colostomy found that issues persisted. True UC symptoms though should essentially be non-problematic after an ostomy is placed.
 
David

David

Co-Founder
Location
Naples, Florida
It is certainly possible that you have Crohn's or UC but if you've had them for nine years, your treatment has been dietary and lifestyle and probiotic, and all you have at this point is mucosal inflammation, then you've certainly had it easy which is awesome. As you say though, it can all change at the drop of a hat.

As for your time in the sun, I suspect whatever theory you have (I'd be interested in hearing it) associated with that isn't very crazy. As I was reading your post, when you said you experience symptoms more in the winter, I was going to ask about your vitamin D level.

The antibiotics you took prior to each outbreak, were they Quinolones, Penicillins, Clindamycin or Cephalosporins?

Yes, Crohn's and UC are idiopathic colitis. And maybe one day we'll find the underlying cause is the same and then they manifest differently based upon any myriad of variables. And believe me, I cringe everytime I hear a story of someone getting a colectomy for their UC and later being diagnosed with Crohn's. But I do believe that proper diagnosis is incredibly important. First, as we know, there are many other potential causes of acute and chronic inflammation in the gi tract that require very different treatment than if you have Crohn's or UC. Just think of someone with intestinal tuberculosis getting Humira *shudder*

In differentiating between Crohn's and UC, I am a big fan of the top down approach to treating Crohn's. Conversely, unless it is an advanced case of UC, I like the idea of treating with mesalamine first. I cringe every time I see someone here with Crohn's who is only on mesalamine. And then of course there is the all important curative component of a colectomy for UC NGNG above mentions.

Fascinating indeed :)
 
2thFairy

2thFairy

I had my colectomy for UC 2-1/2 years ago, and even if it at some point it is determined that I had Crohn's all along, I will still have no regrets. The colon needed to go! I guess I don't understand why this is a sore topic with either of you...?
 
David

David

Co-Founder
Location
Naples, Florida
2thFairy said:
I had my colectomy for UC 2-1/2 years ago, and even if it at some point it is determined that I had Crohn's all along, I will still have no regrets. The colon needed to go! I guess I don't understand why this is a sore topic with either of you...?
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You're much more mature than I am :) I feel like if I was in that position, even if my colon HAD to go, if my doctor told m e, "Congratulations, you're now cured, go enjoy life" and then some time later it turned out I had Crohn's, I'd be pretty upset.

I'm glad there's people with your perspective and maturity out there. :)
 
nogutsnoglory

nogutsnoglory

Moderator
I know a number of people with permanent ostomies for UC who were later found to have crohns. I agree with you David I'd be very upset but what can you do? You hope for the best medical team and treatments but sometimes these things don't work out. If it was negligence though I think it's a good medical malpractice case.
 
B

baistuff

I wouldn't say it's a sore topic. The distinction is just overrated. Sure, there are some cases of pure UC and people with SB fistulas where the differences (and treatments) are clear. Put for purely inflammatory disease of the colon, I don't see much use in struggling for years for an exact diagnosis. 5ASA use in crohn's is limited b/c the delivery to the SB is not good. 5asa delivery to the colon is much better. 5ASA though is often used in crohn's by GI's b/c there are some studies linking it to a possible decrease in colon CA risk, even though it doesn't help much with actual symptoms.


As far as top down vs bottom up, I approach it the same way as other conditions- each individual is different. Diabetes and hypertension are now often approached top down, but the way I practice is to evaluate each patient and determine which makes the most sense from an efficacy, side effect and cost standpoint.

I am no expert on SSI, but Qu biologics may be onto something. I've never thought of IBD as an OVER active immune system, rather a derailed immune system gone off on an incorrect path that needs redirection. I don't know if E. coli, MAP or anything else is involved, but anything that can potentially RESET the immune system back on the normal track is worth investigating. Keep in mind they are in phase 1-2 studies. That means if all goes as well as hoped anything for the public is still years off and that is a best case scenario. Any misstep, unexpected negative finding etc.. and it could be longer.

The anti MAP stuff seems similar, but that has been tossed around for over 30 years and never seems to advance. I'm not a research guy so I can't speak intelligently about why that is. I am curious as to why they need to solicit funds. I don't know much, but most of the time these research teams don't need to solicit the public. I've seen the MAP folks asking desperate IBDers to fork over money. Again, this is not a medical statement about MAP, just a curious observation.

In general when it comes to research I read all the conspiracy theories about drug companies stifling "cures." Hogwash. If a drug company landed on an actual cure it would be an absolute goldmine for them. They all compete to actually find cures. Cures in medicine are hard to come by. But they, with other grants, (govt, universities etc...) are always looking for the big one. So when I see QU biologics guys associated with a big Canadian university- I like it. When I see a rogue doctor soliciting funds from a desperate patient population I am very skeptical.

MD
 
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2thFairy

2thFairy

nogutsnoglory said:
I know a number of people with permanent ostomies for UC who were later found to have crohns. I agree with you David I'd be very upset but what can you do? You hope for the best medical team and treatments but sometimes these things don't work out. If it was negligence though I think it's a good medical malpractice case.
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But why? Whether UC or Crohn's, temporary or permanent ileostomy, if the colon is deemed necessary to be removed, the end result would be the same---no colon. The difference would be the need for continued medication or none, and that would be handled in the same manner as for any IBD patient.
 
LodgeLady

LodgeLady

M.D. said:
There is an old saying in medicine, "tissue is the issue." Scope and biopsy. No lab will tell you as much as a biopsy. Good luck.
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Well I'm not so sure all docs agree with this. My initial diagnosis was from colonoscopy and biopsy... Colitis at the terminal ileum. Went on 4 months of 40 mg prednisone, Humira, Pentasa. Pain still persisted when it was found I had a bad gallbladder. Had the choleycystectomy, came off all Crohn's drugs for the surgery. At that time doc thinks it's all GB. Get a repeat colonoscopy, findings normal. Takes back diagnosis. 4 months after being off all Crohn's drugs symptoms gradually come back. 9 weeks on Entocort markedly improve. Come off Entocort, on Pentasa, all is great. Gives me back the Crohn's diagnosis but not totally convinced it's not IBS. Upper GI all normal.

So, was it GB all along? If so my symptoms should not have reappeared. Did all the massive Crohn's treatment resolve the colitis? What does it all mean? IMO too many variables to make a concrete diagnosis, but the symptoms remain and respond to Crohn's treatment. Thoughts?
 
B

baistuff

LodgeLady said:
Well I'm not so sure all docs agree with this. My initial diagnosis was from colonoscopy and biopsy... Colitis at the terminal ileum. Went on 4 months of 40 mg prednisone, Humira, Pentasa. Pain still persisted when it was found I had a bad gallbladder. Had the choleycystectomy, came off all Crohn's drugs for the surgery. At that time doc thinks it's all GB. Get a repeat colonoscopy, findings normal. Takes back diagnosis. 4 months after being off all Crohn's drugs symptoms gradually come back. 9 weeks on Entocort markedly improve. Come off Entocort, on Pentasa, all is great. Gives me back the Crohn's diagnosis but not totally convinced it's not IBS. Upper GI all normal.

So, was it GB all along? If so my symptoms should not have reappeared. Did all the massive Crohn's treatment resolve the colitis? What does it all mean? IMO too many variables to make a concrete diagnosis, but the symptoms remain and respond to Crohn's treatment. Thoughts?
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I am not aware of any gall bladder issue that causes inflammation in the terminal ileum. IBD pt's with terminal ileum involvement often have issues with bile salt resorption, but that is completely separate issue.

Also, I realize most here are not MDs but I think you may be confusing the terms a bit. Colitis refers to only the colon, not the terminal ileum. IBS is functional disorder related to gut motility, transit time, bacterial imbalance, and certainly does affect most IBDers with variable intensity and frequency.

You may want to consider a repeat scope or biopsy, or if that was recent, at least an MRE.
 
UnXmas

UnXmas

M.D. said:
IBS is functional disorder related to gut motility, transit time, bacterial imbalance, and certainly does affect most IBDers with variable intensity and frequency.
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Do you think IBS is one single medical condition? I know a lot of people get told they have IBS, only to later find out they have IBD or some other condition.

How would you ever know if someone with Crohn's also has IBS? As far as I know, an IBS diagnosis is made on the basis of digestive symptoms occurring when tests are negative for other causes. But Crohn's shows up on tests, so if someone has test results showing they have Crohn's, how could they be diagnosed with IBS? All the symptoms of IBS can also be caused by Crohn's, so the diagnosis couldn't be based on symptoms.
 
B

baistuff

UnXmas said:
Do you think IBS is one single medical condition? I know a lot of people get told they have IBS, only to later find out they have IBD or some other condition.

How would you ever know if someone with Crohn's also has IBS? As far as I know, an IBS diagnosis is made on the basis of digestive symptoms occurring when tests are negative for other causes. But Crohn's shows up on tests, so if someone has test results showing they have Crohn's, how could they be diagnosed with IBS? All the symptoms of IBS can also be caused by Crohn's, so the diagnosis couldn't be based on symptoms.
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I think we (myself included) have to be careful with the terms.

IBS is a syndrome characerized by the Rome Criteria- basically you need altered bowel habits, abd pain, and I think bloating or distended belly for at least 3 days on 3 consecutive months, with absence of organic pathology on scope/biopsy.

However, any GI condition can cause temporary or even long term disruption of the normal autonomic nervous system that controls the waves, movement along the GI tract lending to similar symptoms. Normal people who get a self limited GI infection can get a "post infectious irritible bowel" just from a short GI bug or food borne illness. Heck, even people who get "nervous stomachs" before public speaking, or my huge NY Ranger fan friend with a very normal GI system who had a little runs before each Stanley cup final game can be classified with a somewhat irritable bowel.

So, do IBD patients have defined, IBS? maybe some do, a lot problably don't. But I have little doubt that most of us have irritable bowel not only during, but even after our post inflammatory states (for those of us lucky enough to experience healing and quiesence.) Just like we can have active inflammation without many overt symptoms, we can have symptoms without any active inflammation- that can be medication related, diet, or a form of irritable bowel- even if the Rome criteria have not been met.

To be brutally honest, I think one of the worst parts of the condition is the worry and anxiety (not actual anxiety disorder) about our GI systems. And rightfully so. Who here hasn't worried about a long car ride, urgency or gas at a wedding, a date, at the school play, giving the speech at work? That alone is enough to get our guts churning. At least for me, I notice if I am knee deep in work, vigorous exercise or have my mind completely off GI stuff, I tend to feel better. When I think about GI stuff, I tend to notice more gas, bloating- that in my mind is a form of irritable bowel.

Just one silly doc's opinion.
 
Tesscorm

Tesscorm

Moderator
Staff member
A bit late with the welcome but, nonetheless, welcome to the forum! :D

I've very much appreciated your comments and explanations. Lots of very knowledgeable members here, and all I've learned has been from them!, but it's always great to hear from one more knowledgeable and experienced voice. :) Thanks for taking the time to share!

And, I do hope you are also able to take away some support from us members to help deal with your own struggles. :)
 
UnXmas

UnXmas

M.D. said:
To be brutally honest, I think one of the worst parts of the condition is the worry and anxiety (not actual anxiety disorder) about our GI systems. And rightfully so. Who here hasn't worried about a long car ride, urgency or gas at a wedding, a date, at the school play, giving the speech at work? That alone is enough to get our guts churning. At least for me, I notice if I am knee deep in work, vigorous exercise or have my mind completely off GI stuff, I tend to feel better. When I think about GI stuff, I tend to notice more gas, bloating- that in my mind is a form of irritable bowel.
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Thank you for you answer - that makes sense. But the paragraph I quoted is one of things that irritated me when I was (mis)diagnosed with IBS. My symptoms have never corresponded with stress levels. Doctors took it for granted that if I had (as they thought) IBS, it must be stress-related. Today, over a decade later, a gastro suggested that the reason my symptoms worsen when I eat more is because eating makes me stressed. I've had an ileostomy for almost a year, a couple of weeks ago my bowel perforated - my illness is so far from the non-serious IBS and the gastro knows this, yet still insists stress plays a role.

Maybe I'm very unusual, but I know mental stress does not affect my digestive system at all (food is another matter!). Stress affects my sleep, when I'm very nervous I get a tremor, if I've been very emotional I feel exhausted; the correlations aren't perfect but they're definitely there so that I can see stress is affecting me physically. But I really wish it wasn't assumed that stress makes digestive problems worse, whether it's IBS or IBD, because I know that's not universally true. (I realise you didn't say it's universally true, but I've met a lot of doctors who have.)
 
Susan2

Susan2

And another late :welcome:

I am very interested in your views on "remission". There seems to be a general opinion expressed here that Crohn's patients should always remain on maintenance medication and continue regular testing after surgery, whatever their current symptoms are.

I had a proctocolectomy in 2000 and have had no specific CD meds since (other than Loperamide for bouts of diarrhoea) and no testing other than regular blood tests ordered by my GP. I was, therefore, interested in your comment:
Not practical to constantly scope and biopsy. And for the person who feels OK, but has some evidence of activity.. what to do? escalate meds and risk short and long term side effects to accomplish what?
 
B

baistuff

Susan,

For many reasons I cannot give specific advice, but suffice it to say that all of these decisions are individual risk benefit calls. An older person with no colon and no history of small bowel involvement could simply be watched clinically. A younger person with at higher risk for short and long term complications may need more rigorous monitoring and aggressive medical care in an effort to hopefully help prevent short term morbidity and long term risks such as malignancy. I hope this helps.
 
Susan2

Susan2

Sorry, M.D., I obviously didn't make myself clear. I wasn't asking for individual advice; I was interested in what you had to say in relation to what seems to be the generally accepted wisdom around here. I am quite happy with the decision that my GI, GP and I have made. (I fit into your general classification of "An older person [70+] with no colon", although I have some minor history of small bowel involvement.)
 
B

baistuff

Susan2 said:
Sorry, M.D., I obviously didn't make myself clear. I wasn't asking for individual advice; I was interested in what you had to say in relation to what seems to be the generally accepted wisdom around here. I am quite happy with the decision that my GI, GP and I have made. (I fit into your general classification of "An older person [70+] with no colon", although I have some minor history of small bowel involvement.)
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One only has to browse the various threads here to see how difficult IBD can be. Many do require aggresive treatment to get to, and maintain quienscence and also to protect against long term complications.

There was an old school of thought that many immune mediated diseases "burn out" as we age. I have not seen too many studies about that. I'm sure many people here can weigh on that. I don't put much stock into that. Maybe after age 65 or so when we see other commun immune functions decline (fever response, loss maintenance to some previous vaccination immunity) the severity or activity of IBD may decline, but by then often a lot of damage has been done. Also, younger people tend to tolerate some of the big gun meds better than older folks.

At the end of the day though, like almost everything else in medicine, it's a patient by patient call.
 
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