Does your consultant not really understand how you feel?

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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/23/2009 6:23 AM (GMT -6)   
I went for my follow-up appointment at the hospital today with my consultant, after my stay in hospital a few weeks ago. He has reduced my medication down which is great as things have improved. But nearly every time I see him he seems to make a point of saying that Proctitis doesn't cause alot of health problems or interrupt your life. And that as in my case - it can just be hard to treat sometimes. I have been off work for 2 months so far and have been feeling pretty ill with it, when I told him the GP had signed me off all this time and I said I hoped to go back this week, he half-laughed and said "Yes I think you will be fine to be at work".
 
As a consultant he is really good and in every other aspect really knows what he is talking about, and I know I could have it so much worse, as so many of you here do. But I feel sometimes like he thinks I'm making a big deal out of nothing and that all I've got is just a 'nuisance rather than a problem' (his words when I was first diagnosed.)
 

22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
30mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
1g Mesalazine granules x 4
Fybogel supplement
Vitamin tablet
 
                             
                             


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/23/2009 6:49 AM (GMT -6)   
Unfortunately some GI's are just CLUELESS when it comes to the physical and emotional impact of this condition. I know you're in the UK but is there anyway you can change doctors to one that is more sympathetic? Or is that too hard to do?
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qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/23/2009 8:00 AM (GMT -6)   
Possibly, I'm going to see my GP this afternoon to discuss my appt at the hospital and to sort out going back to work, I'll see what she says as she is very sympathetic and understands how I feel :)

22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2009 10:33 AM (GMT -6)   
Of course he doesn't know how you feel, unless he also has UC. I had to explain to my first GI that I was very stressed about the possiblility of an accident at work because my office wasn't right across from the restroom. He never really understood. No one can relate to the urgency and inability ot wait unless they've been there.

My current GI is a woman, and she's wonderfully empathetic.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/23/2009 11:09 AM (GMT -6)   
My wife doesn't even fully understand how I feel, lol. I expect much less from everyone else.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/23/2009 11:27 AM (GMT -6)   
I have the opposite problem, I guess. I am the "denial" patient who fights through the pain and anxiety to carry out my responsibilities, when my doc and husband they tell me I would be justified in staying at home and resting considering the condition I am in sometimes. I despise the idea of being weak or frail, so I just pretend to the world that I am not. It works for me.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, down to 10 mg. Waiting for insurance decison on Humira... 


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 3/23/2009 11:28 AM (GMT -6)   
Mu husband claims to understand, but when I tell him to please hurry when we are about a mile from home and the urgency hits me, and he refuses to go over the speed limit, "in case a cop is around", I know he really doesn't have a clue.

If I was driving, the cop would have to put his sirens on and follow me to me house and into the bathroom, as I would not stop.
And pity him if he did follow me into the bathroom.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/23/2009 11:40 AM (GMT -6)   
Oh, yes, I would do the same!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, down to 10 mg. Waiting for insurance decison on Humira... 


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/23/2009 12:51 PM (GMT -6)   

Haha I'm imagining your scenario of the police following any of us into the bathroom...not pleasant!

I don't suffer with the emergency so much as the fatigue, headaches and nausea, etc. But as a general package you would think that someone like a hospital consultant who knows all there is to know about Colitis would have a bit more understanding and sympathy about what we go through. But I suppose you're right that its harder for other people if they don't have it themselves.


22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
20mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 1
1g Acetarsol suppositories x 1 (soon to change to Acetarsol)
1g Mesalazine granules x 2
Vitamins A,C,D 
                             
                             


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/23/2009 1:13 PM (GMT -6)   
I saw a bumper sticker the other day that said "I'm speeding because I have to poop." I told my husband that I needed it! :)

I think your consultant is a jerk, qwerty1! Yes, he may not have what you do, but that still gives him no right to say that it's not that bad! As a medical professional, he should know better than that! Heck, as a compassionate human being, he should, too!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/23/2009 1:25 PM (GMT -6)   
fruitgirl said...
I saw a bumper sticker the other day that said "I'm speeding because I have to poop." I told my husband that I needed it! :)

I think your consultant is a jerk, qwerty1! Yes, he may not have what you do, but that still gives him no right to say that it's not that bad! As a medical professional, he should know better than that! Heck, as a compassionate human being, he should, too!

Ha... I saw one, too. Wondered if the driver was a fellow IBDer.
 
My first GI told me a flex sig with no sedation wouldn't hurt me much because she was only going to go in a little way and that there weren't many nerve endings in the rectum. Evidently she didn't take into account that  the over 20 BMs per day I was having at the time might make me a little sensitive to touch, much less being scoped.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2009 1:45 PM (GMT -6)   
I hear you, Princesa. No one puts anything in my backside without sedation. Fortunately, I've never had a doc who used sigs. Mine have always gone for the whole colonoscopy.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 3/24/2009 8:15 PM (GMT -6)   
princesa said...
 My first GI told me a flex sig with no sedation wouldn't hurt me much because she was only going to go in a little way and that there weren't many nerve endings in the rectum. Evidently she didn't take into account that  the over 20 BMs per day I was having at the time might make me a little sensitive to touch, much less being scoped.
My first GI told me my flex sig wouldn't hurt at all, too. While he was taking the biopsies, he kept saying "you shouldn't be feeling a thing," as I was fighting with every I had not to burst into tears from the intense pain. I could feel every snip he was making. Following that appointment, I started flaring again. I will never again have a flex sig without sedation. Sometimes GIs are jerks, and you should try to get a new one if you don't feel comfortable with this one.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops; Ortho Tri-Cyclen

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