Colitis and Stress 151 Patient Survey Results – Part 3

Part 3 of the Colitis and Stress Survey:

(based off the responses from 151 UC patients on August 8th, 2012.  Part 1 and Part 2 answers can be found in the iHaveUC Survey’s Section of the website)

 

Question 3:

Are your doctor’s appointments/doctor visits stressful for you?

• Sometimes Yes, Sometimes No, just depends              68   (45%)
• No                                                                                           58  (38%)
• Yes                                                                                          25  (17%)

Additional comments were submitted by 62 different people:

• I am ok when I am feeling well. When I am sick, I feel very stressed and at times hopeless.
• It depends on how I’m feeling at the time. I was my GI monday and I was feeling stressful as I was in a flair and felt yuck! I also feel that I want to get on top of my UC and can feel that the more I talk ti my GI the more I’m taking up his time. I do know that he is there for me and is concerned about my condition. He does come from a more academic perspective. I can sometimes walk away feeling like I have more I wanted to know.
• I don’t like going to the GI. He doesn’t recognise the SCD diet and always prescribes me new drugs even when I have no symptoms, it’s only because he takes 3 months to get an appointment with so if something goes wrong.
• Most doctors do not listen. Just want you to follow the cookie cutter protocol.
• Sometimes I feel stressed about possible outcomes prior to visits but I have an excellent specialist who is the most cheerful man of earth! He is very good at explaining things clearly, giving a realistic view and making me feel I am being treated as an individual and not a number,
• i get a bit worried .when she puts on her plastic gloves for a normal visit
• When I have been feeling awful I tend to get upset when im at the doctors, when Im feeling good Im all smiles haha.
• During my last and all of the other episodes, I visit my GP so many times looking for some medication to help manage my symptoms. It takes so long to get to see the consultant, and the medication that has previously worked for me is no longer available. Eventually I had a date through to see the consultant, that was another 3 weeks away; by this time I was desperate for a solution to stop the symptoms and paid to see a consultant privately. Just as well I did as 6 weeks on, after a consultation with the National Health specialist, I’m still waiting for the consultant to send details of suitable treatment to my GP.The private medical specialist gave me a treatment plan and medication that was effective , combined with me working from home and following the instructions from the Doctor my symptoms cleared up in a few weeks.So yes it is very stressful process seeing medical professionals on so many different levels; it takes so long to get an appointment, by the time you see them, either the symptoms have gone or they don’t seem to get the treatment right. I have been shifted between consultants and hospitals as O don’t think they know how to deal with me as I refuse to take medication if it is not effective. What makes it worse is the last time I saw the consultant she knew how upset , frustrated and despaired I was as I was a physical wreck; crying so much I couldn’t tell her how I was feeling for the first 5 minutes. There seems to be a lack of empathy and understanding of how debilitating and humiliating Colitis can be.

  My GP has been wonderful; although not a specialist in the field or able to prescribe specific medication, he took time to listen to my complaints and acknowledge how difficult having colitis is.

• Just don’t feel like we are progressing fast enough to get me better.
• My consultant is friendly, listens to me, is calm, reasonable and I’m very lucky.
• I have a great specialist, he doesn’t make me stressed, but I just get stressed/nervous when I go for doctor visits, I just dont like having to go.
• This past May, my gastroenterologist said she can’t help me and I need to go to another institution! Her attitude was like it was my fault I’m sensitive to those horrible meds. My attitude is she’s a bitch, sorry.
• Too stressful going to dr running all those test etc. I decided to not go back.
• When I have my remicade treatments
• They used to be. I would cry and get overwhelmed in my appointments but then when I started getting into natural medicine and acupuncture I’ve had an easier time with my doctors because I’ve realized that I can control how I feel and I need to take measures to eliminate stress and help myself feel better by looking at lifestyle changes. And I feel lucky enough to have found great support including acupuncturists, natropathic doctors who help with nutrition and other lifestyle issues.
• Depends which doctor I see. One is fantastic who understands and helped me get the diagnosis. Another doesn’t seem interested and would have kept giving me omeprazole and I would have never got diagnosed.
• Whenever i go out or wait around (especially for an appointment at the doctors) my stomach can get in the way of worry for getting to the loo on time. But at the end of the day, as long as you know where they are located, you’ve just got to calm down and say “Its fine” because 1 in 5 people have this problem, so its not just you.
• I have a wonderful doc for the past 30 years…very modern & up to date!
• I get anxiety before most appointments. Somtimes I feel as though I have to plan my whole life around visits to the doctor.
• Being 23 and just having to deal with being sick and going to the doctor is stressful in itself. The bill comes and that is stressful too! However, when I have been doing well for several months (like now) and I just have to go for a refill, it doesn’t seem so bad.
• I tend to look after myself and only go to there docs when necessary. Had to go back on steroids to get over a flare a few months back but haven’t been since. They have a few toilets there which helps!
• Never! All my doctors, nurses and specialists are so great. If I have a problem they will help and it reduces my stress levels so much.
• Every time I think my doctor is going to palpate my abdomen or stick his fingers up my butt causing pain makes for great anxiety.
• Depends who I’m seeing, the GI nurse is sympathetic however the consultant stresses me because I find it embarrasssing talking about all my problems, especially as he doesn’t understand the impact for a young female adult and I don’t agree with everything he says. It would be nice he understood the pyscological aspects as well and could recommend a workshop on how to control stress etc.
• Yes because I find that the doctor answers the questions they ask just by looking at you across from the desk. They don’t really have answers for your questions though. I have changed doctors but they have appeared to be content that you´re not dead.
• When I’m in a flare…yes. Doctors don’t seem to really listen, or help much. At least, for me. In my experience.
• Sometimes, because he has talked about surgery before and I’m afraid he might talk of it again.
• Since I switched to a natural doctor that gives me hope and inspiration when I see him, I have been less worried to see a Dr.
• It’s just annoying that they already know what’s wrong with me but I still have to go see them . It’s. Not different it’s uc
• The most stressful aspect of dealing with my doctor is the fact that it is impossible to see or reach her. I spend most of my time either waiting for calls from nurses or leaving messages with medical assistants.
• Because I despise needles, having the needle inserted for Remicade (and my veins are small and like to roll) is upsetting to me. I am getting better (have been on it since Oct 2011), and I count out loud during insertion to prevent me from passing out. This simple act of counting helps me, and I recommend it to all who are squeamish.
• With my current Dr. I dont mind visits at all. But in the past I felt I had to go in with all systems on high alert to lay down the law and refuse sudden changes to medications I wasn’t comfortable with.
• My new doctor feels some of the anxiety that goes along with uc is mental, I just don’t think someone who hasn’t lived daily with hemmerhoids for over 2 years can fully understand the mental exhaustion UC can create, so I sometimes leave thinking its all in my head but I know it’s not
• When I have pain or severe bathroom issues he just says it is only IBS and not my UC. And he is he one who told me I had UC! Also I have been on Imuran for three years and when I asked him about the cancer risk he said not to worry about it! He is the only Internest in my community so I don’t have a choice in who I can see! Not much fun
• My doctor, thankfully, was in full agreement with me when I recently decided I’d had more than enough of sulfasalazine (which had NEVER seemed to accomplish a thing) and was going to put my self on a different regimen. I am feeling much better except for the worsening of my arthritis which apparently the drug had helped somewhat.
• I love my doctor he is really good. The only constraint is time factor, I am a professor and research, teaching, committee work, speaking appointments etc. demand a lot of time.
• I get nervous as usual–only because since I am on no meds he seems to think I am still in denial of my disease–Uh, the colonoscopy shows everything A-OK–I just tell him I am managing it with my diet and doing wellnot for me
• They are annoying and I always feel like the doctors are 50 years behind in their knowledge and research about uc. That pissed me off but I don’t really stress about it.
• Sometimes they are just routine and sometimes I worry about the results, particularly if I haven’t been feeling great and have had a UC flare up, I find it quite distressing. Its never pleasant hearing that the medication you are on is not working and you need to change it: or the medication you are on is working for the UC but causing other problems.
• My doctors are really good and help keep me in the loop and calm me down :)
• Depends–if appt is just a check up or if I am not feeling well. Going back on steriods are always a concern if I am sick.
• I always get anxious before a dr. appts especially since my UC diagnosis.
• Yes, but only because I find them very unhelpful and I am not offered the treatment that I need. (cut backs I guess?!)
• My doc wants to put me on immunosuppressants & wants me to undergo gastric bypass surgery. It stresses me out to think that I would be subjecting myself to drugs that have side effects worse than my UC. Not to mention my weight should be an issue for a UC doc.
• I get stressed when I visit my consultant as I worry what medication he is going to try me on next and what the side effects will be. Last time I ended up with pancreatitis due to the medication.
• Because I do not want to go on 6mp..I’m still on predisone and iron but when the predisone runs it’s next on his list for me. I really want to go off meds and watch the diet.
• because I know j pouch surgery is coming up soon for me.
• I feel that doctors just DON’T take the time to talk to you as a person, their theories are narrow minded and based on their parrot fashion studies, irrespective of studies, surely a case by case and patient by patient study will reveal that sometimes something will work for one patient and then show no benefits at all to another. They merely prescribe a long list of medication and see you off. Perhaps speaking to patients in depth may help gain a better knowledge base of the “phenomenon” known as UC.
• I had a very bad flare. I was nervous that it was something else besides uc
• They are very standard because I feel like there is never any new I formation he has to share.
• It really varies. Some appointments seem fairly pointless, nothing much happens, but when I’m aware changes and huge decisions are going to be made I get fairly worked up to the point of looking for irrational ways to get out of going.
• Time to be scoped
• I’m from Dominican Republic, and I’ve been to a lot of doctors that have disappointed me in the past and made my condition worse, but finally I’ve found a doctor from Spain that I trust, he has been very patient and very helpful.
• Because I go to a teaching hospital and I have to see a fellow and I would prefer to see the specialist and not the Fellow.
• They used to be because my doctor’s old staff was rude and unfriendly. They made me feel like I was wrong for calling his office when I was having flare ups. Since then he’s switched groups, and staffs, and doctor visits are pretty stress-free for me. It helps to know you can talk to your doctor about any aspect of your illness – they really have heard it all, and this is their field of study.
• Because health sucks in the USA doctors never tell you the whole story .just enought info to get keep coming back so they can charge your insurance company again and again.
• especially when the dr. doesn’t really listen; more so when I am in an active flare
• depends how emotionally strong I am feeling.
• I dont like my doctor he is very rude tells me i should get a third job with better insurance
• I only see my “all-round doctor”. I don’t see my UC doctor.
• The uncertainty of not knowing anything about the future with this disease is most stressful. Doctors can treat symptoms, but aren’t able to definitively cure it which is stressful to me.
• New docs and scopes are very stressful.

 

The final section, Part 4 of the Colitis Stress Survey will be available tomorrow on the homepage of the website.

Feel free to add a comment below.

-Adam