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Anybody else ever feel like they're sick of doctors? I know I am.

As many of you know, it's been a trying year for me. I've had a lot of issues crop up, some pouch related and some not, and consequently I'm being bounced around to different specialists because nobody seems to know exactly what it is that's causing my symptoms, or whether or not they're interrelated. Furthermore, my GI also left the country in July, necessitating me to see a "fill in" when I had (suspected) pouchitis a couple of months ago, and now I'm waiting to meet with yet another new doctor in October, who will hopefully become my new GI.

Anyway, yesterday, I ended up at an after hours walk-in clinic because I scratched my cornea. Totally unrelated to my other issues, yes, but as I sat in the overcrowded waiting room waiting to get a prescription for eye drops, I just kept thinking... my goodness, when is this ever going to end?

I feel like I get things that nobody else has. I mean, a j-pouch itself is relatively rare enough, but I get everything else, too. Although I was doing well for quite a few years, this isn't the first time I've had the ping-ponging physician stuff going on. In 2007, while I still had my rectum, I developed a rarer manifestation of UC in the form of severe mouth ulcerations. At the time, I was bounced from my family doctor to two different GPs, a dentist, an oral surgeon, my former GI and finally to an ENT who prescribed a mouth rinse to clear up the issue. I feel like I'm going through the same long drawn out process again, just for different symptoms.

All this does get depressing at times. I don't feel like a hypochondriac, but sometimes I do feel like I'm becoming a professional patient. It all gets so very frustrating, especially when doctors tell me that they can't find a cause for the symptoms.

I really need a break.
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Spooky,

I empathize with you. I find myself getting very aggravated and have no patience for the normally healthy person who has a headache or sinus issue that they complain about. I seem to shut them off when they make very small issues into a huge mountain. Unfortunately, I find myself having little compassion for people who have not walked our walk with all the issues, pain, discomfort and time we have lost in our lives due to chronic illness. I know this is not nice to admit to and i is something I need to deal with, but in my heart of hearts, I do get envious of other seemingly healthy individuals who do not have to deal with chronic illness, drugs, pain, etc. Doctors probably get as tired of seeing us repeatedly as we do them and not having one centralized go to medical professional can also be extremely frustrating.

I hope your new GI takes the time to listen to you and can help you moving forward if you have additional medical issues to deal with.
Jeane, ditto that. Sometimes I think my GP is sick of me - not necessarily because I go that often, but because when I do go, lately it's something she doesn't have an answer for. So I'm sure I frustrate her as well. She just doesn't know what to do with me.

As for being envious of others, I do get that too. Sometimes I look at my coworkers - more than a few of whom smoke, get take out food daily, don't exercise, etc, and yet they don't seem to have chronic health issues. On the other hand, I've always exercised, eaten well, never smoked, and like to think I have a healthy lifestyle, yet I've ended up with the chronic issues. Yes, I know that's something I also need to deal with, but at times like this I often wonder what I did to deserve this whacky ride I'm on.
Spooky,
I think that we should embrasse our inner 'bit-h' and say, 'yes, I am pissed off that I work my little (not so little) butt off trying to get healthy against all odds and these lazy, cranky, slovenly so-and-sos get a free pass on good health without even giving it a second thought.'...Yes, I get sick and tired of of being sick (recent occlusion proved to me that I am more afraid of going back to the hospital and being treated like a chronic sick person than I am of suffering in pain and putting my life at risk)...I want to yell at those people who take their health for granted that it isn't fair. I watch the runners who leap like gazelles over obstacle in the park and look at me bouncing like a hippo in shorts, with pity in their eyes that say, 'give up while you still have some dignity left'...and I want to scream! They didn't have to live through what I did and do..and they would be glued to their sofas if they did...but I can't...and I don't need a shrink to tell me why...I am a fighter but I get so sick of fighting some days...sick of being sick and sick of explaining a yellow pages sized medical file to every new doctor that I meet...
I still think that we deserve a 'get out of Jail free' card for every day health issues...we deserve it!
Hope you feel better soon Spooky and that this is the last of your health issue for a long time.
Sharon
quote:
In 2007, while I still had my rectum, I developed a rarer manifestation of UC in the form of severe mouth ulcerations.


Interesting oddity..... my friend was diagnosed with Bechet's Syndrome (took years for her to get some kind of a diagnosis) for all of her ailments, but one of the main indicators for her was mouth and vaginal ulcerations. Her other primary symptom is joint inflammation.

http://www.medicinenet.com/beh..._of_behcets_syndrome
I felt like you Spooky for my UC and my feet. I was sent to see a C/R surgeon, years before my UC diagnosis, after my GP thought he saw lesions in my rectum that were causing me to have blood in my stool. The so called surgeon told me I must be seeing tomatoes in my stool. When I told him it was blood that I had not been eating tomatoes all the times I saw blood the told me he knew trained nurses that mistook tomatoes for blood in their stools. So without examining me he told me to come back if I had any more problems. I think I was diagnosed around 7-10 years later, after much pain and many embarrassing episodes running for the restroom. It took my OYGBN sending me to a GI after my hysterectomy, and me being in pain another year and 2 scopes to be diagnosed then. I had it pan colon. I didn't have the surgeries until around 14 years later.

It also took 4 Podiatrist's, 3 GP's, 1 Rheumy 1 MRI, 2 X-rays, various other tests and a Neurologist plus 8 years to figure out I had neuropathy in both of my feet. They kept diagnosing the problem the wrong thing and putting it in the fibromyalgia bucket with all of my fibro problems and the Rheumy said it wasn't etc. By the time I was correctly diagnosed it was not reversible and we are "watching" it to see if it spreads to my hands. The cause is unknown. I suppose by watching it we will figure out the cause IF IT SPREADS. In the meantime I need to use a cane on many occasions, especially if there is no grocery cart to hang on to or I'm going to walk very far. It is not caused by Flagyl.

I'm not totally sick of doctors, just about the three fourth's of them that we have to go through to get to the correct diagnosis!

Thank God my OBGYN was around to diagnosis my IBD and FIbromyalgia. He was a great doctor, whose son-in-law was a GI.
TE Marie, considering the severity of my UC, it took weeks for me to get a diagnosis as well. That being said, I was also more than a little naive at the start. I really had no idea that UC could be so serious. I really thought it was like a more severe version of IBS and that since we now had a diagnosis, I could just take some meds and tinker with my diet a bit and everything would be fine once we got the flare under control. Boy did I get a wake up call fast. This disease literally slammed me upside the head. UC nearly killed me and I was having emergency surgery within 3 weeks of receiving the diagnosis. Shock of my life.

But I'm more than just a little weary of this journey. I don't know why it has to take so long for us to get a proper diagnosis and/or treatment.

I'm just hoping that everything will finally click into place when I meet with my new GI in 2 weeks, and that maybe this pingponging around from specialist to specialist will finally come to an end.

Sharon, I can always hope that I'm finally at the end of a long list of things. It would certainly be a nice break. Smiler
Last edited by Spooky
ERs are good if you get into a car accident, get bit by your neighbor's dog, get shot or fall off the roof and break some bones, but for some of the issues people on this board have, like blockages, I would be nervous going to some local walk in clinic. They may not even have an NG tube at some places and even if they do, do you want someone doing his or her first NG tube insertion on you? I was lucky to have my NG tube inserted at Mount Sinai Medical Center in NYC by a seasoned physician who was appropriately ruthless in inserting NG tubes. You don't want someone being gentle or inexperienced. Gentle and inexperienced is not going to work with an NG tube insertion.

For some of the more complex GI issues that you guys have, if you can, identify who can best handle a reasonably foreseeable emergency in your area and make arrangements to go there. In big cities like Toronto or Washington DC it's impossible that there are no competent facilities that can handle unique GI emergencies. If you live in rural Montana maybe there will be an issue but not in the big cities. Do your homework NOW and do not wait for the next issue to arise and then be scrambling to figure out where you are going to go. That kind of mental calculation has to be done before the emergency arises, not after.
Last edited by CTBarrister
CTBarrister,

Absolutely. I think everyone with a pouch, ostomy, IBD, etc, should have such a plan in place, since we DO need specialized care, and since many places are either not properly informed or else not properly equipped enough to deal with us. I vowed some time ago that at this point, if I ever have another GI emergency, I will only go to Mt. Sinai in Toronto, even though the hospital isn't the most convenient for me to get to and from. It's not even where I had my surgeries; although I love my surgeon, I'm not a fan of the ER at the hospital where I had my surgeries done. I'd rather avoid their ER. Unless you're having a heart attack, have sustained a fracture, or are bleeding out, their ER is kind of a revolving door scenario for almost everything else.

As I said earlier, I find walk-ins to be essentially useless except for specific situations; i.e. you need stitches or cream for a rash or something to that effect (I went to one a couple of weeks ago, for the first time in years, because I scratched my cornea with a contact lens and needed prescription drops - specific problem, specific solution). Otherwise, you get no real work up nor any follow up care.
I would think about emergency medical services even when you go on vacation. I recall when I stayed at Hedonism in Negril, Jamaica, I was worried I might have some medical issue. All they had there, at the time, was a small nurse's station. On my last day there my foot and ankle suddenly and inexplicably swelled up like to the size of a cantaloupe. It was ballooning on me, and I was certain I had contracted Dengue Fever (there was a travel advisory to Jamaica at the time due to an outbreak of Dengue Fever). I actually went so far as to write a "last letter" to my parents in the event of my death, and brought it to the nurse's station. The nurse laughed at me and said I had a spider bite. She gave me a salve of some kind that took the swelling down within that same day.

You definitely want to look at emergency health care issues any time you go on an exotic vacation. I personally witnessed a lady suffer a horrific injury on a trampoline at the Club Med in Turks& Caicos- a compound fracture of her tibia with the broken bone sticking out of the skin. That is a surgical injury and I am pretty sure she got flown to Miami as I never saw her again at the Club after that and she was on my charter flying down.

Just be prepared for any and every possibility and do not be ashamed about being prepared for the worst.
Last edited by CTBarrister
I've digitalised most of my medical file (in both French and English) including my scans, opacifications and my most recent bloodwork...I keep it all on a data key in my purse...in case of emergency I can give it to the ER doc and he has everything including my Canadain and French surgeon's phone numbers.
Having a k pouch can be dangerous if you can't get the tube in so I keep a few different kits with me when I travel, some have just the basics and others my emergency stuff. I can't count on a ER in a foreign county having the stuff that I need...and of course the full pharmacy for anyone with an ostomy including antibiotics, creams, pepto, muscle relaxants and anti-inflamatories.
Lately I find that I have more meds and less clothes in my luggage. Too bad, I wish it were the other way around. (and yes, I am envious of those who travel without even a bandaid)
Sharon
Hi everyone, I'm fairly new at this and am so glad to know that your all here, helping everyone. Thank you from the bottom of my heart.I've been sick for awhile as have many of you. I'm not always sure I'm posting at the right places, but the topic sick of doctors really caught my attention, and hit a nerve. I apologize for my lack of patients but I'm on the verge of a nervous break down. I live in Montreal Canada and well our medical system purely sucks! Excuse my French. I switched from one hospital to another which was extremely hard like I explained in one of my posts. It's very political as here they are fighting with a language issue. Anyhow I started of with being diagnosed with UC at age of 8 years old then then then told my parents I was cured. My parents are immigrants didn't understand the language but they were told I didn't need to go back to the hospital but never told that I needed to be followed closely either. Had normal life as teenager. Actually no symptoms what so ever from age 12 till 20 married got pregnant difficult delivery and bang!!4 th degree tear and had symptoms of vaginal rectal fistulas, later followed by diarrhea. Emergency total colectomy and the roller coaster began. Ileostomy then ileostamosis connection but fistula never properly repaired. Complication over coplications the transfer file to new intern. Young trusting and naive. I had learned how to live going to bathroom 10-12 times a day with some incontinence they keep on telling me it was that or a permanent ileostomy.Internet was not popular at that time but was not ready to except my life that way, started stirring things up looking for answers. A friend lived in Virginia and knew someone living with UC mentioned j-pouch so I transferred my file from French to English which costed me a bunch. I sent it over and thay gave me hope about jpouch with repair of fistulas. Long story short did the surgery which gave me problems from the begining. More complication I ended up still with fistula incontinent, ileitis in my eyes, sacroilitis, that ended me in hospital almost immobilized.intestinal obstructions, leakage at the anastamosis connection which leaded to ovarian cysts and total hysterectomy. Best part they forgot, well only noticed after pathology report came back, and that it was missing but couldn't understand what happened. Sadly it caused inflammation which pushed against my kidneys which lead me to collaps while I was driving and ended me in the er. Which lasted for 6 months straight.I had 8 surgeries back to back. I laid in bed with abdominals all opened up for weeks I was me a crucial situation. They never were clear with me and just blamed it on complications. A fancy word for errors. I ended up getting weaker and weaker they punctured the other kidney At this point, we begged them to put an ileostomy to give me my life back but it was not what I had bargained for.At this point my husband took me to another hospital which explained that things went really wrong and that my body needed rest for a while and then we can examine to see if there really was fistulas that explained the leakage I was having. Well under anestitia examination more complication both lungs colappesed phneumo thorax and later followed with pulmonary thrombosis and arthmia. Besides the odd and end abscesses and pelvic pain. You figure your in the hands of experienced doctors but I feel like I'm dealing with a bunch of lost cases that have no clue what to tell you send you from one specialist to another. It's getting to the point that I don't trust anyone anymore. No one gives you any answer but best is they say they will get back to me and no one calls. You call them and they look bother when you do. I'm wearing a ileostomy and yet wear diapers, due to constant leakage. It's 2 years I have no energy and up till now my moral was optimistic but now it's playing on my mental state and I don't know how much more of this I can take. They are now talking about gracillias muscle flap with syphinter repair using the pacemaker inter slim. I'm scared and confused!! I wish these doctors would be more compassionate.. Anyone have any input what do I do? Is there a light at the end of this tunnel???

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