Ulcerative Colitis Tips


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Chronic Disease from a Doctor’s Point-of-View

Introduction:

Hi, Sunnycape here, I’ve already posted my story previously…. just want to add an article for you guys to read. It’s something I found very interesting and think you will too.

Chronic Disease from a Doctor’s Point of View:

Hi there, I came across this article which I thought was really interesting. It’s a letter/article which speaks from a doctor’s perspective – one who deals with chronic disease all the time. I found it a refreshing and useful read.

I think the IhaveUC site is amazing and very informative. I have learned a great deal and gathered information. I now use L-Glutamine and have seen that many people have been able to maintain remission on their own, without the use of harsh meds which is really inspiring. I do think, though, that sometimes we are pressured to go off our meds and that meds are thought of as an all-bad route to follow, which I personally don’t appreciate. We do not join a support group to be swayed in one direction. We join so that our views are heard and valued, no matter what they are. I get disheartened when not only are all meds put down as ineffective simply because they haven’t worked for some people, but also, that the doctors are degraded and spoken against so harshly. It is really off-putting. I believe everything and everyone has their worth and place, including the doctors out there who are trying their utmost for their patients. There are good and bad people out the re, in all professions, including the medical profession but we cannot dismiss the medical profession. If that is what this site is about, then I’m not sure it’s the site for me, which would be a shame as it’s a great group in many respects, one that offers valuable information and support.

So, I discovered this article which gives insight into the doctor’s world. Our disease is difficult for us to deal with but also for them. I hope everyone gives it a read and keeps the faith!

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

written by Sunny Cape




42 Responses to Chronic Disease from a Doctor’s Point-of-View

  1. bev July 7, 2013 at 1:25 pm #

    Well said Sunny Cape,

    I myself have been guilty, a time or two, or overly criticizing doctors, as well as meds. I tend to ‘go off’ like that every so often, and you are so correct. We do join support sites for different opinions and advice…not to be swayed one way or the other.

    I appreciate what you are saying and it’s a good wake up call…especially to those of us who sometimes DO get a bit ‘go off the deep end’-ish!

    Great to hear from you again!

    Thank you,
    Bev
    :)

    • Hammad
      hammad July 7, 2013 at 3:56 pm #

      Well said Bev…you do kinda put the idea of medication down because the natural way is working so well for you…but u reached that point after a 14 years of trial and error. Who dont want to treat it naturally but whatever it is the goal is to stay in remission. I sometimes do so well that i forget i have UC but then one morning just reminds us what a nasty condition it can be. I personally dont think all the doctors support the natural way but after all they are humans and sometimes they wish they can help us but unfortunately they cannot.

      • bev July 7, 2013 at 9:56 pm #

        Yes, Hammad. I sometimes feel like I don’t have UC…but like you said…all of a sudden you can get quite a reminder!

        Doctors are still learning about treating this condition for sure. Hopefully, in the future they will be able to offer natural ways, as well as meds. I think they do really want and intend to try and help us.

        Bev
        :)

  2. Caroline
    Caroline July 7, 2013 at 3:50 pm #

    Thanks for sharing, Sunny Cape! That is a great article and I like the perspective that it gives. I am really fortunate to have a wonderful GI doc that is respectful of my wishes to go off meds next year, but always gives me options (both medical and natural). I also work with an amazing acupuncturist. No matter how we want or need to treat our condition, we need to have a strong team of resources to give us support and help. And this site is a perfect compliment to that – I am glad people here are on my team! Thank you to Adam for creating this site and to all of the people on it that offer their experiences and advice.

    Caroline

  3. Joanna July 7, 2013 at 10:03 pm #

    Thankfully, my gi doctor has crohns disease so he can see right through me during my appointments if im not saying something. It is hard though because he has been on imuran and humira for years with success and im still trying everything out.

  4. Joe July 7, 2013 at 11:23 pm #

    Good points made here. One would have to be slightly insane to generalize everyone on this planet into one or another category – obviously there are exceptions to all professions. However, one should also be cautious to dispel anyone’s experiences with certain gastroenterology specialists. I have not had a positive encounter with one doctor at all. Not only that, but have been threatened and abused by said doctors for refusing the prescribed drugs – that did NOTHING to assist in remission, or relief of pain.

    Therefore, even though I appreciate what is being said here, and yes there are good doctors out there who genuinely wish to help, there are many who are servants to the corporate pharmaceutical industry. Anyone paying attention will see that the FDA does not care about the well being of UC sufferers when they have just classified poop as a drug. Therefore, making it near impossible to receive a fecal-transplant pending “approval” from the FDA. If they can’t make money off us, they don’t want to know about us.

    Thankfully, I have had some improvements in my UC through following the Paloe Diet, daily intake of probiotics and L-Glutamine. Once I stopped taking Azathioprine, 6MP, and Prednizone, my condition improved dramatically. Each to there own, and if the drugs help then that’s great. But, when they don’t, it’s great to hear how others with this insidious disease help themselves. Natural remedies are so scorned upon by the medical fraternity, that I feel the odds are not in our favor. I’m sure the doctors can take care of themselves, and don’t require support from UC patients who they’ve abused for seeking an alternative route. One needs to be objective in all manners of life. Peace.

    • bev July 8, 2013 at 5:57 am #

      Fab, Joe. Great post as always…

      I have not had one good experience with a GI, and I saw four different ones. BUT…I’m sure that there are ‘good’ doctors out there who truly want to help….I just never encountered any, either.

  5. shelly in maine July 8, 2013 at 5:58 am #

    Sunny Cape…thanks for your post. I agree and often remind people this is not a one size fits all disease/condition. We are all in this UC battle/ war together…people do need to voice their opinions,but reminded not to admonish those who do not agree… those are far and few and generally, end up being “banned” or leave this site. As busy as Adam is he does monitor the site.
    Anyway, I am also lucky to have a great G.I. and my primary care is a D.O. ,which I highly recommend to anyone, since they treat the whole person. We all need a good Dr. We trust and trusts us…healthcare is a team effort especially if you have chronic conditions.

    Be patient and kind and remember to be supportive…that is what Adam intended…a supportive and sharing UC community.
    Be well all, Shelly

    And Bev..no worries-everyone loves you, your enthusiasm and positive attitude! :-)

    • bev July 8, 2013 at 8:35 am #

      All I can say is….

      :)

      • shelly in maine July 8, 2013 at 8:41 am #

        Right back at ya! :-)

  6. Joan H
    Hope July 8, 2013 at 2:19 pm #

    As a practicing RN for almost 25 years (24 and 3/4 to be exact!), I can say I’m very wary of many of the web sites I’ve seen that can DR and NURSE bash when I have given my life to doing all I can to partner with people in getting better, living better, having a better quality of life. Sometimes that includes medicines, sometimes it does not. Sometimes a combination of medicine, non-medicine, surgery, therapies, psychological and psychiatric help…all kinds of combinations, and all kinds of diseases, all kinds of people — and everyone unique.
    I love this site, and it truly is the first one I’ve found in years – whether it’s about UC or depression or any number of other challenges – because I find a balanced perspective here. I do sometimes see what Sunny Cape is talking about, with negatives about dr’s and health professionals and their medicines and lack of listening :) (didn’t say I always agree, but I have noticed) and I also see positives and negatives about “alternative therapies” and such. But on any web site, you find all these differing opinions. What makes this site so different in my eyes – and again, I’ve heard, seen and/or been the recipient of bashing the health professions so I’m more sensitive to comments, I realize – what I love about this site is that people actually share the good and the bad and the tough and happy aspects of their lives, their opinions and their diseases and challenges. There seems to always be an encouragement to “keep pressing on, you can do it”, a sense of humor and compassion, and a very definite “There are many ways to walk this road” approach from Adam and the others who post. I LOVE that there is a spot for J pouchers and others who have had surgery, and I’m thankful to hear from you all and read everyday, picking up a little here and there for my journey with UC.
    I really appreciate the article you shared, Sunny Cape, sooo much on Chronic Disease from a Dr’s Point of View. It rings so true for me and others in the medical/nursing field and it is truly my heart to love and treat people with respect and dignity, offer the choices I’m aware of to the best of my ability, and most of all listen and walk the road with them when they let me. The Dr who posted put that into words so well for me, so thank you for sharing it.
    My own road with UC right now includes multiple medications, a food and fluid journal, rice and chicken bits with my hope to increase my proteins a little more for healing, and probiotics. I want to get better myself, I want to learn more, and I want to help others as they go through this too. Like everyone above said, we’re really all in this together – so thanks everyone!

  7. MarkFN July 8, 2013 at 2:27 pm #

    If anyone who has had colitis for an extended period of time, i.e. at least a few years, most likely they will have gone through a couple of GI doctors in search of better relief of their symptoms. That is not to say that the first doctor may not be the best, because in my case, the first doctor I ever saw was probably the best one, but I nonetheless went through another 5 as I kept searching for a better quality of life. It is true that not every single “GI genius” cares about nothing but writing script after script, that would be a very closeminded statement; however, the way all GI doctors are trained in med schools to treat IBD is COMPLETELY FLAWED!!! Instead of learning about nutrition, stress, supplementation, or other alternative treatments that put people into remission, they simply are presented with a cocktail of drugs that do one of two things: 1)supress the body’s immune response and 2) reduce inflammation. These do nothing to address the underlying cause of the condition, they just mask them. As the article linked in this story shows, some doctors are somewhat afraid to treat people with IBD???? Are you kidding me? I guess I would be afraid to do a job I am not properly trained to do as well. Its not that the doctors are bad, its just that the western medical system doesnt put them in the proper position to truly help people with chrohns or colitis. I think the fact that this site exists is strong enough evidence to prove that a majority of us UCers are not happy with their doctors/drugs. Colitis is a bacterial imbalance in the colon. Fix the imbalance, fix the problem. I know that many people are afraid/skeptical of fecal transplants but unless one has tried it and failed and failed with multiple donors, then one should never doubt or discredit the fact that it does legitimately cure people.

    • bev July 8, 2013 at 6:06 pm #

      Yes! So many UCers seek alternative treatment because they know themselves that the ‘system’ isn’t working. The UC drug ‘merry-go-round’ gets old…

      And, here is this site on the web!! It seems this is the place to be if you have UC!! (No rhyme intended). UCers find this site and they find what they are searching for…REAL ANSWERS…REAL HELP…

      It is so sad that doctors aren’t set up for what we need…

  8. Joan H
    Hope July 8, 2013 at 3:01 pm #

    True, Mark. There are so many people out there who want to help but really don’t know much about the probiotic approach or fecal transplant or other things and they treat as best as they can with what they know, truly wanting to help. I guess my thought is, we can share this with our dr’s because we do know there are options out there. I know there are dr’s that just go through a day like it’s just a job-“here’s-your-script-see-you-in-three-months” kind of attitude. The majority of people I’ve met in the profession over the years are the opposite. They really want to help. And, yes, Western medicine is a model of health care delivery that is slowly breaking down. Most of the patients I see have herbals and naturals in their repertoire. Twenty years ago, we all thought it was crazy! But it is so common now to see. Still there are many things lacking in the field of not just UC reserach and treatment, but many other diseases. I think the Dr who wrote the blog that Sunny Cape shared wasn’t saying he was afraid of chronic illness in a sense. I think he was saying he was admitting he’s just another human being like you and me, flaws and all. There are lots of things dr’s and nurses are afraid to treat – it’s tough to see people suffer and not have all the answers or always know what to do. All you have to do is look into the eyes of a dying patient, or see the desperation in a person’s face as they lose their lives slowly to Huntington’s Disease, or watch a family suffer along with their chronically ill loved one to know that there is a kind of pain and loss that hurts us all, and makes us all human. And makes us all wish we could do more. The impression I got from the article was that the Dr (Rob Lambert) was actually acknowledging the respect he has for something bigger than himself, and for people who have suffered and endured so much. Like me with UC. I get what you’re saying about the teaching being flawed, but I guess I’d have to say it’s not completely flawed. There’s lots of great people out there, trying to treat, trying to learn and earnestly wanting to see other people get better. So I’m planning on sharing this web site with my doctors and letting them know about the positive results I’ve been having, and hopefully other people on this site will too. I think if you have an MD with an open mind, or even an MD with a mind that wants to help but doesn’t know how any more or feels he/she is running out of options, this is a good web site to refer them to. So that’s my plan :) And I plan to keep on moving myself in the right direction and sharing the things I’m learning with other people too.

  9. MarkFN July 8, 2013 at 3:19 pm #

    Hope…I totally understand where you are coming from. I do not believe doctors simply do not give a crap about their patients…that just seems inhuman and I guarantee that most if not all of doctors truly want their patients to get better. However, the way the medical system is set up, and believe me I am not trying to get into a large debate over socializing healthcare, that is a whole topic by itself, but the doctor must make money off the patients he sees or he simply wouldnt be able to continue his practice. Doctors will not make much money if they inform them of probiotics, diet, FECAL TRANSPLANTS…things that work much better for a large portion of IBD patients. They are able to prescribe drugs until they have exhausted all possibilites before surgery, does that seem like the right way to treat this condition? The last doctor I had dealt with didnt even know about the probiotic acidophilus…I mean are you kidding me this is like the first probiotic one learns about in like 2 mins of research!!! And this guy was telling me to get my colon removed once remicade stopped working?? I do not believe all doctors are bad, in fact I believe that damn near 100% are good people who want the best for their patients, I just think that the best way of treating this condition conflicts TOO STRONGLY with their financial future and therefore the majority of us UCers suffer unnecessarily for too long. Its got to change…

    • Joan H
      Hope July 8, 2013 at 5:31 pm #

      I know Mark. I hear you. And I hope I didn’t make it seem like I didn’t. I was just trying to write something that’s hard to put in words for me, I guess. You’re right, too, if a doctor didn’t know about acidophilus I would wonder what was going on with that MD too. I think everyone knows something about it, even if you just watch a yogurt commercial! Yes, there’s a lot of money to be made in pharmaceuticals, and a lot of times it is like putting a bandaid on something that needs to be totally reworked and reoonstructed. Some of the Eastern philosophies and practices have begun to be accepted as part of medical culture over the past twenty years. But it’s a long road before we really get people looking at things that way – at least giving it an equal, fighting chance. That’s why I’m so happy about this web site. I think Eastern medicine and tradition has also benefitted from our research and some of our technologies, too, but it all takes time. And in the meantime, many people are suffering and not knowing what to do or where to even start. I’ve been talking to people around my office about this web site and just letting people know what’s possibly available, and how much the little bit I’ve been putting into practice over the last two weeks has helped me. As I learn while I read and research and do the things I’m reading about, I’m going to keep sharing it. And with my GI doctor, who I’m scheduled to see in a month. I have to say, I’m sorry you ran into someone who didn’t seem to know much about all that. I’ve been very lucky in that the GI dr’s I’ve had ( I see Bev hasn’t had very good experiences either which is sad too) – I’ve seen 7 MD’s, and have had really bad input from 2 (one didn’t care at all what I was living with or how much pain I was in, didn’t even Believe me and it takes a lot for me to go for help like that) and really good advice and help from the others I’ve seen. My latest GI Doc is like someone trying to partner with me to figure it out, so I’m thankful for that. I hope you have someone in your area too, whether you take any meds or not, it’s good to have that connection. Anyway, thanks for writing back – all the best – Hope

    • bev July 8, 2013 at 6:02 pm #

      Gotta agree MarkFN…

      I think UC treatment is approached all wrong, usually right from the get go…

      Things have to and probably will change, but the doctors have to go to ‘conferences’ and workshops and learn new ways…that takes a long time…they also have to be willing.

      They’ve gone to med school for years and years, only to have to throw their old knowledge out the window and perhaps adopt new knowledge…how hard must that be?

  10. shelly in maine July 8, 2013 at 3:41 pm #

    I think the system is changing…my GI just went to a huge conference and came back a little more open minded talking about genes and the microbiome which was just in the CCFA newsletter for those that get it. I see the despair in my GI’s eyes who clearly has NO time to hop on the internet which received a terrible reputation in the beginning. (My D.O., on the other hand encourages the internet-mayo clinic and even hands me articles!) Imagine everything you’ve learned all your life and believed in being somewhat discredited by internet seeking, everyday people. As the Dr. In the report stated about people not coming on too strong. Remember, too, that meds do work for a lot of the people, a lot of the time.
    Mark, no one is saying no to fecal transplants, but allowing others to try their routes. I feel, as i have said before, it may only be a fix and probably a very good one until something screws up the balance yet again. There are so many factors involved from our own bodies, disease, colds/flus, genetics, accidents, chemicals, questionable food supplies….you can’t turn on the TV without hearing another food recall or FDA email that I signed up for.
    Anyway, point is it is an old western way of thinking that has to change…in time and with info. shared.
    :-) Shelly

    • bev July 8, 2013 at 5:58 pm #

      That is SO true Shelly….imagine that some of the things that the doctors learned are now obsolete…or worse…just wrong. I suppose that’s pretty hard to take! It must be very difficult being a doctor these days. There was no internet 20 years ago…we had to take what the doctors said as the medical gospel.

      I guess some things just change. That’s how we all learn. Something new and better comes along, and a lot of the archaic stuff goes right out the window.

      Bev

  11. Sharon July 9, 2013 at 5:42 am #

    Wow. I could write a book here. First, thank you for this awesome article. I printed it to take to my GI (who I LOVE). Second, imagine being a doctor and having irate, frustrated patients double dog dare you to fix this crazy illness in a 10 minute appointment and then telling you something like “I heard drinking Marley’s Mellow Mood can cure this better than drugs”. Even Adam was a little thrown by that one!My point is that doctors are expected to know all the latest research from the medical field, understand supplements from all over the world(which are not even FDA regulated and may have varying ingredients based on brand), know nutrition, eastern philosophy, file your insurance, and be available ASAP if you need them. Sometimes we put all of our frustration on them when we are really just frustrated with UC. My doc once told me, he had a patient yell at him for not being able to “cure his burp”. He occasionally got the burps and it was annoying and if the doctor was any good he could fix it. My doctor said it was all he could do to not “inform” said patient that he had just left the room of a woman dying from colon cancer. She would gladly take his burp if he would take her cancer. Doctors get tired too.

    By the way, I did not join this website because of my frustration with doctors and meds. I joined this website to connect with a community of those who get it. I love the breadth and depth of knowledge, the real concern from complete strangers, and the ability to encourage and be encouraged. My doctor doesn’t have all the answers. I don’t have all the answers. You don’t have all the answers. Together, we are a force to be reckoned with, full of ammo to fight what seems unbeatable and to celebrate each other’s victories, no matter how the battle was won.

    • bev July 9, 2013 at 6:50 am #

      Fantastic Sharon…

      This post almost brought tears to my eyes. Love your last paragraph…

      I hope your daughter is okay.

    • Joan H
      Hope July 9, 2013 at 3:08 pm #

      LOVE your comments Sharon! Perfect! You put my thoughts into words – I was having trouble expressing that and you just did it for me! :) I have found myself getting angry or frustrated at many a doctor or health care provider only to realize afterwards that the thing I’m really angry at is ulcerative colitis! I’ve learned over the years that no one is perfect, and no one person has all the answers. And as much as they want to, they can’t always “fix it”. In fact, in my case and many others the drs USUALLY can’t “fix it”. Chronic disease is a bear! What I need to learn is to be more patient and less angry with MYSELF that I have UC – I get that way when I feel the limitations. Anyway, I’m rambling. But this whole conversation has been good with everyone, and as you said, together we are a force to be reckoned with.

  12. Sharon July 9, 2013 at 6:00 am #

    By the way, my 13 yr old daughter recently had blood in her stool…antenaes up! I TEXTED my GI over 4TH OF JULY (a privilege I do not overuse) to ask him to order labs so I could have results in by the time I could get her an appointment with his office. He replied within an hour that he could not see pediatric patients but gave me the name of someone he trusts. He went on to say that he would be praying for her that this is nothing serious and that she would be well. This is a man who doesn’t have all the answers but I am privileged to have on my team. I have had 6 GI doctors (4 in varying cities in Florida, South Carolina, and Delaware). One called me personally several times during a horrible flare to monitor me daily, one patiently heard me refuse a colonoscopy since my other experience had been without anesthesia and had traumatized me (he treated me with dignity and respect and ultimatly did the scope), one called on prep day to ask how I was doing, one was a jerk in the office with terrible bedside manner until I ended up in the ER and hospital for a week with a baby at home. Just like dating, sometimes you need to break up with Dr. Wrong to find Dr. Right. And just like husbands, there is no such thing as perfection.

    • Caroline
      Caroline July 9, 2013 at 6:17 am #

      Amen to that, Sharon! My first GI that actually diagnosed me was not a fit. Took one look at me in his office, pale and 20 pounds underweight, listened to me describe my symptoms for about 90 seconds, told me I had UC and he would do a colonoscopy to confirm, and sent me on my way with a pamphlet that told me I would probably get colon cancer and likely would lose my colon at some point. After the colonoscopy (where the only feedback he shared was that my colon was “very angry” and I would be on meds the rest of my life) I asked around and found the one I see now. He is empathetic, a great listener, works me in when I need to see him, and is open to hearing my experience with UC and asks questions about what supplements and diets I am finding success with. I love that he’s quick to admit he doesn’t have all the answers.

      Doctors are like any other population – some good, some bad. Some dbs, some great people. We owe it to ourselves to find one that we can work with!

    • shelly in maine July 9, 2013 at 10:06 am #

      Sharon…good luck with your daughter…sending lots of positive, healthy thoughts. Good to know about alternatives and have access to the internet now.
      :-) Shelly

  13. sunny cape July 9, 2013 at 7:15 am #

    Thanks for all the responses so far. I’m glad this article has been thought-provoking. Sharon, I feel exactly the same – I joined this site to give and receive encouragement and support as the more people on your side the better, in trying to handle this disease. I loved your reply, thank you. I hope and pray it’s nothing serious with your daughter.Xxx

  14. uc family boy July 9, 2013 at 7:38 am #

    Alot of points seem common sense. I fear doctors don’t understand the perpective of the letter though. If Doctors ran by them guidelines than it would be easier relationship.
    Ultimately I have experience the majority find themselves unattached to the patient and would only want to coresponse a conversation based on filling you up on pills.

    I recently went to see my GI. I havent had a colonscopy as yet so we do not know how much we are dealing with and as a result I am dealing with a month of remission followed by a relapse. I suggested about my diet is the only saving grace as the meds dont work (maybe becuase we havent seen the extent we need to deal with) but he suggested I shouldn’t stop eating chocolate because what sort of life is that (what sort of life is UC I thought!!!). I said I really need to have a colonscopy ‘its been 18months now doc, we need to have a look, see what we are dealing with’. His repsonse; ‘I agree but lets do some blood test to see your inflammation levels and see how many pills we should be giving you’ and than meet again in January. You don’t want to get me started on how this makes me feel….

    Also, on a brief note as I am in the business of dealing with solutions and not problems and see my doc as a problem and FMT as a solution. I discussed with him, explained and asked about the Dr. Brody Project (as I call it) from which he said there wasn’t enough established papers to determine the validation of it. I told him I plan to do this, he I think wrote it down on my file and said…

    …’you have to do what you think you have to do’

  15. shelly in maine July 9, 2013 at 10:16 am #

    We all have Dr. Horror stories to tell, like a fill in GI who refused to see me because I was less than 5 mins late for a Morning appt. I told them I would have trouble getting to..Duh, in the midst of a severe flare he put me on pred. And 6 MP that I was allergic to and then in a severe allergybeing masked by the pred! Or the Dr., while in the hospital having every heart test because I was having heart symptoms, not typicalGallbladder symptoms..said it was all in my head and anxiety…prescribed me anxiety meds…which I used to slow the gallbladder symptoms to get to the hospital 2 more times! Anyway, took a hot shot ER guy and my own research and a nurse after all that to get the right tests done…yes, Gallbladder!
    Point also, medicine is clearly not an exact science and nor are our bodies…as my Dr. calls me a 1%’er of how I will react to things. Same with the shingles and iritis, etc, etc. Takes a team and good research!
    :-) Shelly

  16. Dezh July 9, 2013 at 3:19 pm #

    Thank you for linking the article! I found it very enlightening and heartening. I realize that medical workers want to help, and I appreciate all the people who have taken care of me during this process.

    I haven’t officially introduced myself/given my testimony on the site yet, though I’ve been an active lurker/reader since my first flare and hospitalization, which was almost a year ago. One of the things I most appreciate about this site is the myriad of experiences that people share regarding their symptoms/flares, treatment, and experiences with the medical community. UC is such a *particular* disorder that it can feel quite isolating at times, and reading people’s testimonies helps break through that. We all have different journeys to health.

    I was uninsured and between jobs at the time of the flare, and I didn’t really have much choice when it came to medical care. My own experience doctors were a mixed bag, and more often that not I left feeling very demoralized and vulnerable.

    Reading about people’s experiences with their doctors, both good and bad, helped me figure out what a healthy, cooperative doctor/patient relationship is like, and what is simply not acceptable.

    During one of my lower moments, I remember reading a woman’s testimony here that echoed the desperation and frustration I felt about feeling dismissed by my doctors. And one of the comments really resonated with me, which was basically telling the OP to tell the doctors to go fuck themselves, and anybody else who continued to diminish her. It really gave me the morale boost I needed to start taking control of my care and to begin advocating for myself. It was a turning point for me, and extremely empowering.

    I think a good health care provider, especially one you see continually, should never leave you feeling diminished or dismissed. The writer of the article seems to understand that:

    “So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.”

    I’m happy to say that I’m in remission and I am thankful for that. Though I am currently not on any medication, I know that my colitis might flare up again and I might need other kinds of treatment in the future. It’s nice to know that I’ll have this site (thank you, Adam!), and the community (Bev!) to help support/offer insight through those possible changes. But for now I’m just trying to stay healthy, and enjoy the remission.

    • bev July 9, 2013 at 9:55 pm #

      What a fabulous post, Dezh…you site ‘lurker’ you!

      Was it me who basically told the doctor to f*** off?? Because, I basically did…lol…I suppose am a ‘problem’ patient now…unless a doctor treats me like a person, then, I’m the dream one. Unfortunately, it’s not been my experience to be treated with any sort of respect at all…just more like a pain in the ass.

      I am just happy to enjoy my current remission, always well aware that the old UC could ‘rear’ it’s nasty head again. I’m just trying to stay healthy too!

      :)

  17. Dezh July 10, 2013 at 8:35 am #

    Hi Bev! It might have definitely been your comment that I read. I know a lot of people in the comments were in agreement about that particular sentiment, as they should have been. Going through a flare can feel so disempowering, I know that at times my sense of self mirrored what I saw in my toilet. I didn’t need any more stress coming from the people who are supposed to help. Feeling railroaded and dismissed is the worst, especially during a time of vulnerability.

    I think respect and understanding are key in proper care, and the OP’s linked article seem to emphasize that. I remember reading an article on NPR that touched upon that called, A Busy ER Doctor Slows Down To Help Patients Cope With Adversity: http://tinyurl.com/l6tuz53

    I also believe, as others have mentioned, that the problems we have regarding medical care is an institutional/cultural one, and not just a matter of a few bad apples spoiling the bunch.

    On a sort of related note, I’m happy to see UC/digestive orders in the news more, or maybe I just pay attention more. There was a recent piece in the NYT about a person who donated her stool for her friend’s fmt, and all the issues that came up during the process. It’s called Why I Donated My Stool, http://tinyurl.com/kphorr4

    • Joan H
      Hope July 10, 2013 at 4:17 pm #

      Thanks Dezh – love the article from the dr who slows down to help patients cope with adversity – great stuff :)

    • bev July 11, 2013 at 6:03 am #

      Yes….thank you Dezh!

      I also do agree that it’s the ‘system’ that is broken, not just the ‘apples’…

      Cheers

  18. Don
    Don July 10, 2013 at 10:10 am #

    Thanks Sunnycape for posting this. I am one who has had nothing but bad experiences with doctors and I have been avoiding them and their meds for awhile now. My experience with nurses is totally opposite. I find most of them very caring and helpful. Reading Dr. Robs’ letter made me a little angry at first because he seems to want understanding when from my experience doctors don’t want to hear what I have to say at all. I had a GI throw my chart down in anger and basically tell me to get out after I told him I quit Asacol because it wasn’t helping and actually felt it was hurting me! I do understand a doctors’ frustration and I do believe there are good doctors out there. I just haven’t found one yet. I think Mark hit the nail on the head. Doctors are just not trained to deal with the cause and it’s easier and profitable to just dispense meds. I read somewhere that there is no glory in finding cures to disease. It only brings an onslaught of negative feedback from the medical community. I believe that is true. Another thing I realize is that insurance and fear of lawsuits govern treatment. That is sad. Thank the goddess that we have the internet and web sites like this (thanks Adam!) to help us see what others go through and what they are having success with. I have been dealing with UC for 7 years and I know there isn’t one answer, you need to try everything until you find something that works for you and remember that just because it works for you doesn’t mean it will work for someone else. My brother and sister are suffering from this too and the things that have worked for me don’t work for them! It’s crazy I tell you! I do want to give a shout out to Bev for guiding me to the Ultra Flora Critical Care probiotic and the fermented L-Glutamine. After only 2 weeks I am seeing amazing results! Thanks Bev! Kiss! Kiss! Kiss!
    Don

    • bev July 10, 2013 at 10:31 am #

      OMGoodnes!!!

      Happiness and bliss, Don…that’s how I feel at this very moment!! Beyond that, even…

      Good things :)

  19. sunnycape July 10, 2013 at 12:08 pm #

    Hi Don, I just typed a whole long message and then wiped it off by mistake! argh…

    I find it sad that you have not found the right doctor for you yet. He/She is out there!! My doctor isn’t perfect – occasionally a bit abrupt but he has compassion and makes me laugh. Once, when I was flaring badly and had tried numerous things he admitted he didn’t know what to do for me. At the time I felt angry that he’d said that as I expected answers from him (afterall, he’s a Professor in Gastroenterology) but now I know he was just being honest with me. He overlooks the extra cost I am supposed to pay over and above the medical aid rate as he knows I cannot afford it. He also has a team of nurses and a research woman who is charge of all the clinical trials. I depend on them a lot and they are available on bbm, phone etc… so I know from my experience that good doctors are around. Maybe you need to come to S.Africa? ;-)

    I am aware that medicine is big business for pharmaceutical companies and for the doctors. My doctor charges double for a methotrexate shot to be done at his practice compared to if I do it myself and get the drug from the chain pharmacy we have here. But I think when it comes to doctors we pay for their knowledge. I met someone recently who dropped out of medicine at the end of 2nd year. He told me to imagine studying 10 telephone directories, typed in a tiny font, per year. Sounds hectic… I also think that complementary meds and vitamins are extremely expensive too. I was in the health shop the other day and asked the shop assistant the price of a 50 billion strain probiotic and when he told me it cost $50 (in our money the amount was 500 Rand – a fortune) I looked at him in dismay and said I cannot possibly afford that! Instead I got a lower strain for half the price which was still expensive. Then there’s L-Glutamine, a Multivitamin, Zinc, Folic Acid, Omega 3, Calcium, Magnesium and the list goes on… My methotrexate medication is far cheaper than most of these complementary meds as is cortizone (as evil as it is) so, let’s face it, the health industry is out to make money too. It would be awesome if the doctors could join forces with the complementary practitioners but a huge chasm still exists between the two. I will say my doctor keeps in contact with a dietician who works nearby, who specialises in chronic disease, so at least he does that. I hope you find a decent doc one day, Don, should there come a time that you need one.

    Thanks to Adam for the site – I want to reiterate that I do appreciate it (in case that didn’t come across). I’m all for support and think people with chronic disease need positivity in abundance. I appreciate the information I receive here and the learning… x

  20. Hammad
    hammad July 10, 2013 at 2:07 pm #

    Don
    Your doctor threw your chart and throw you out because you stop taking the meds. Wow thats insane…there should be something done about doctors like these. I understand there is nothing they can do to treat us but if u stopped taking it , it probably was not doing anything other than making you sicker. The problem with UC meds is that they tent to interfere with other organs. Like continued use of prednisone can develop diabetes or bone problems, Lialda and imuran can effect your kidneys and livers. We just have to decide for ourself what would we like to keep the most.

  21. uc family boy July 11, 2013 at 3:02 am #

    Lets not forget IBD is the enermy, not the doctors :-)

    • Adam
      Adam July 11, 2013 at 7:59 am #

      Right on!

      It’s so easy to blame your doc when things aren’t going well, but that rarely brings remission. Keeping positive and hope alive is key , and switching docs if you feel it’s necessary is usually a decent option too.

  22. MarkFN July 11, 2013 at 4:22 pm #

    In my opinion, a GI’s services should only be used for 1)Diagnosis via colonoscopy and 2)Usage of drugs in time of extreme flare…that is it. Many of us, myself included, have this perception that when we go to the doctor they are going to have all the answers and make us better….well they dont and its really not they’re fault. They are trained to diagnose and prescribe drugs, plain and simple; its not their fault its just what the system dictates. In my opinion and many others on this site, drugs are not the best means of treating UC. I am not discrediting their efficacy or necessity in times of need, but nobody should deny the long term side effects of prolonged drug use should not be chosen if alternative, natural methods are available and every bit if not more effective. Taking control of this condition by yourself is much more practical, cheap, effective, and “liberating” than relying on some doctor who doesnt know what it is truly like to live and deal with it day in and day out. Doctors are not bad people, I’m not by any means saying that, its just I cannot understand how some people are so “in love” with thier GI doctors. This is crazy to me because these doctors really are not providing the best or overall “safest” care long term for the patient. Nothing is as truly empowering to a person with UC than trusting their own body and figuring out their own means of managing the disease. I’d venture to say that 99% of GI doctors dont have as much overall practical knowledge of how to deal with the condition than someone who has lived with it for a number of years.

  23. Sharon July 12, 2013 at 4:50 am #

    MarkFN, I am sure you expect me to disagree with you but surprisingly, I really don’t. I only see my GI under the conditions you mentioned. The reason I love my GI, is that he has a reasonable expectation that I need him for those things (scopes and drugs when needed) but not to dictate my choices. When I have been at the end of my rope, he helps me navigate into my next remission. When I tapered too fast from Prednisone one time, I came into his office for a follow up having just gotten out of the hospital. He took one look at me (eyes darting, unable to focus, restless) and walked over to take my pulse. He looked at my pupils and told me I had tapered too fast. I knew something was wrong but my GP told me I was suffering from anxiety after my near death experience and simply needed a few days on Xanax. Even though I told the GP I thought the longterm usage of the steroids at levels as high as 125mg in the hospital were the problem. The reason I love my GI is that he is smart enough to know what he can and cannot do. He is open to chinese herbs, yoga, and definitely probiotics. I even discussed russian chaga with him before starting on that. He told me to go for it even though he only knew what I told him about it.

    I agree that the system is broke. I think a lot of doctors are as frustrated with the insurance companies, lawyers, policies and politics as we are. Many of them want to help but find that giving us the best treatment is sometimes limited by these other things. Can you even imagine the lawsuits if a doctor prescribed chinese herbs and someone died from them? Or what about the VSL#3 DS? It has been scientifically proven to help but considered “alternative therapy” by most insurance companies and is financially out of reach for most people.

  24. Don
    Don July 25, 2013 at 1:06 pm #

    Well I am hopeful about finding a new GI doctor. A friend recommended him and noted that when he does a colonoscopy he doesn’t make you do the typical prep but they use a water flush. This is great news to me because inducing diarrhea has sent me into a flare before. This doctor comes with great recommendations and I am hoping we can work together. I will be sensitive to his ego and go easy on him. I will let you know how it goes.
    Don

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