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Posted 5/26/2009 1:49 AM (GMT 0)
Hello to all of you fine folks on the UC Board.

Though I was diagnosed with Ulcerative Proctitis last May and certainly have had my share of flaring, etc. over the year, my focus has changed in the last 5-6 months or so. Any of you who read my posts and my back and forth banter with Quincy know of what I am talking about. 

I am absolutely terrified of what is going on with me and I no longer think it is a Health Anxiety thing. No need to get into all the details but just wanted to send my apologies out to all for sending so many "unrelated to UC Posts" out there on such a regular basis.

Quincy has been so wonderful and helpful to me as she has to so many others on this board and so I tend to seek her out because she has a way of calming my fears.  This is the board that I bumped into Quincy and so I keep coming back for her advice.

So once again, just want to apologize for all the "unrelated to UC Posts".

Take care all.

Post Edited (ZLSJ) : 5/25/2009 8:04:16 PM (GMT-6)

Posted 5/26/2009 1:58 AM (GMT 0)
No apology necessary for me. I learn a lot even from the non-related posts. If you need help..seek it wherever you can find it!
Posted 5/26/2009 3:58 AM (GMT 0)
It's no bother to me...I honestly ignore the posts that you and quincy start to each other, mostly because I get lost about what the two of you are talking about! Hope that you get everything sorted out. And, I view this board as a support group, so it doesn't bother me that you're seeking support for non-UC stuff.
Posted 5/26/2009 4:31 AM (GMT 0)

Ignore the posts??? LOL

I can see why...we do tend to go off on a tangent discussing stuff as we are in the same city of 600-700,000 people so have a lot of things each other can relate to....doctors, weather, restaurants, etc. oh and UC too!

Posted 5/26/2009 8:31 AM (GMT 0)
Wow...and I thought from this title that you did something "bad".....lol!

Gee, At least the responses aren't nit-picking or arguing....if that were the case, I can see the possibility of apologising.

Not all comment to all posts, and many on here relate in different ways.


I can relate to the anxiety and can make suggestions....and it wouldn't make any difference if you were in Wpg or not.

Eventually, your issues will get figured out...the crappy part is that it takes time to do so. 


quincy

Posted 5/26/2009 11:22 AM (GMT 0)
No need to apologize. If the moderators felt the need to delete your off topic posts, it would've of been done by now. If you feel the need to apologize for unrelated posts then can I suggest you two connect via email?
Posted 5/26/2009 8:45 PM (GMT 0)
ZLSJ...hope you're having an OK day.

Thanks Sherry.....
Posted 5/26/2009 11:38 PM (GMT 0)

Hey Quincy,

Thanks for asking, things are ok. I'm likely going to be a bit long winded here.

I had an appointment with doc that I made 2.5  weeks ago because it was going to be the only day I was going to be in town for the next month. Then I popped in to get a copy of my results and got in to see her. I've yet to cancel the appointment and don't think I will. 

Having said that, not sure what I'll ask her. As much as I like her, when I mentioned the SIBO breath test she "seemed" to be confused. I don't think it was unreasonable to ask about it as AM's endoscopy report had a blurb right at the end about many of my issues stemming from IBS. (by the way I got a copy of the report for both my last C-scope as well as the endoscopy) As mentioned previously, nothing of any significance to report out of those. I've been trying to get a hold of my favourite nurse and I'm now convinced she will not call me back. I guess they've had enough of me. sad She was always so good in getting back to me. Maybe AM has told her to stay away from me.

I guess I just have to realize that a proper diagnosis does not come overnight these days. It has been 5 months since I started going back to the docs claiming that something is not right with me. You're likely not going to be happy hearing this, but I would hazard a guess that I've been to see one doc or another about 10-12 times in that period. What a drain on the healthcare system!

Why do I keep going back? Because no one is giving me a strong reasoning for my left sided back issues, my changed appearance, (my face) lost weight, gross smelling stools and gas, my stomach issues (AM was made aware of the issues since Jan and pushes it all on IBS) , etc, etc. If I don't look out for myself who will? My new doc is the first one who seems to take me seriously, thank goodness for her.

My dear wife is tired of me going to the doc, and has made comments that hurt me. I try not to make an issue of them but they still hurt.

As much as this is a bummer post, I do feel better about things then I was while on the Effexor. All I've tried to do is keep myself focused on the fact that it could be a combination of minor things and all will be well. It really is tough doing this though!

I'm moving closer to home as the days go on...in Brandon now. Back home Thursday night.

Did you get a chance to enjoy this wonderful day? Or were you working?

Thanks once again for your concern. You're the greatest!

Post Edited (ZLSJ) : 5/26/2009 5:41:00 PM (GMT-6)

Posted 5/27/2009 8:51 AM (GMT 0)
Hi....lots of road to travel...nice scenery at least! Yes, the day was glorious compared to Monday. I spent it at home, but still enjoyed the sunshine and balmy day without the high humidity. I had most of the windows open...nice with no smoke from all the recent house fires...sheesh.. or bbqs or neighbours burning trash in their chimineas...can you tell I'm not too tolerant of the smell of smoke?
Otherwise it was an OK day.


I suggest you make sure your appointment is still happening and not cancelled anyway just in case it was assumed so by the assistant/receptionist since you got in to see the doc previously.

Awesome you got copies of your test results.

Regarding AM's nurse..did you leave a message there? What would you be wanting to enquire about..for having SIBO breath test?

Did you say right out to any of the doctors that you're afraid you might have pancreatic cancer? What was the response?

What do you feel is the next step needed to get you the answers you need?

I know that for some of us, we have something that is always there and never goes away....with no answers but no real severe problems except continual symptoms that worry us forever.
I have a spot under my left breast, on my rib, that had a small lump that disappeared just before I saw a specialist. There were 3 doctors poking at the area and couldn't find anything. The pain was excrutiating and I was left with the blackest bruise for over a month.
The lump has never returned since then....but the pain is still there, either sensitive or right out discomfort whether it's touched or not.

I have no definitive answer. I'm freaked that it's cancer, but the rheumie thinks it's costrocondritis. I do notice it gets worse when my stress levels are extreme...interestingly frustrating, so I'm having to choose to accept it's an anomaly that I'll always have unless it gets worse to prove it's "something".

I can also totally understand how one's face changes under distress. Mine shows it fairly quickly....but I can cover it up with make-up when I'm out and about..... But with no make-up, all my facial expressions are so obvious...I try so hard to keep a semi smile and not allowing my expressions to move too much downward or inward. I'm vain...what can I say....

I totally understand the changes that you deem you need to do and all will be well. But I also know how it consumed me while being on the hunt for the same quest....as long as I'm functioning, I'm OK. I have days where I'm doing so well, mostly when I'm out and about and not left up to my own devices because that's when I let my sleep cycle take over.
So, much of the problem is me....and how I let some things take over and I'm just too overwhelmed to change it.

You and your wife could really consider to see a counsellor to get stuff aired out. When we have expectations, there is always a lot of hurt. I'm truly guilty of blaming my husband for not being empathetic enough, but it all boils down to how secure I am with myself in the moment. Don't forget that when one partner is focussed on him/herself....that closes the door to perception/reception of the other. In other words, it's a blatent rejection and not such a good place to be on the receiving end.  It's hard to not have expectations.  But I do understand that it's hurtful....but if there's any truth in it, it's worth exploring to change. 

Curious if the Bentylol helps at all with the discomfort in your side and if it's worse during any time of the day?

Well, I'd best get myself to bed..the cat is non-stop "come-on already".  A success if I get up early and get some other stuff done.

Hope you have a feeling better day....

quincy

Posted 5/27/2009 12:04 PM (GMT 0)
Smoke gets to me after a bit too. Do you have allergies? I know my wife really has trouble in the spring. Most anything in the air seems to give her grief. Lasts for about a month or so while all the leaves etc. come out (very typical I guess) Sure seemed like a nice day though I guess it didn't get too warm, just seemed like it because we've become accustomed to the crappy weather.

Will make sure to check on the appointment. Hope they didn't cancel it.

Yes, I've left 3-4 messages. I just used to talk to her about stuff. I guess I did want to ask about the SIBO and a couple of other things.

Told AM that and he said no chance of that, that I had no symptoms. Maybe it's one he doesn't want to touch? New doc as mentioned thinks it may be pancreatitis but I assume ordering a CT is a step in thinking that it is an avenue worth exploring.

I know you indicated in the past that you were a bit of a worrier, didn't realize that you had a "focus" area too. Sometimes it seems like they (doctors) don't believe we know what we're talking about. I guess we're much more informed as patients than we were even 10-15 years ago with info being so much easier to obtain through the net.

Yes, answers is all I want. At least I think so.

It has been tough with my wife somedays. We do talk but it never seems to get anywhere because she doesn't think my concerns are real. It may be some denial on her part that anything could be wrong with me. Things are better than they were but we still have our moments, as everyone does.

Bentylol seems to help some. Is the discomfort worse any part of the day? Can't say for sure. During the day is worse obviously, does not seem to give me any grief through the night though. I do have to do the food watch thing and start trying to cut some stuff out to see that it may be a food thing that causes all of this.

Hope you have a great day. Looks like another nice one.

 

Posted 5/27/2009 8:31 PM (GMT 0)
Hi....you sound more grounded today....logically thinking? that's a good thing, because it doesn't sound like intellectualising.

I do have allergies, but not reaching to the clinical levels, so, I'll say I'm super sensitive..lol!

Smoke, I choke and get a headache....but it's definitely worse if I make a big deal about it..meaning if my temper about not being able to enjoy fresh air is taken away. But, I have to control that aspect because it's beyond my control. The northern fires haven't started yet...ugh. Oh, then there's fall stubble burning...
Winter..my fave time of year is ruined by wood stoves/fireplaces.
Sundays, the local meat market smokes their meat...if the wind direction is south...ugh.

sigh....mumble...lol!

If your wife is suffering because of the weather/season, she's suffering as you are but with specific reason. I can understand her frustration....I hope you're empathetic. I agree with the possibility of denial....but she hasn't the answers either, and I would think that you haven't just started this behaviour in the recent past....have you always had a tendency in how you deal?

Today is a glorious day.....I'm doing stuff at home....well, once I get around to it.

The CT for your pancreas is a good thing....as well as possible ultrasound. But, is it the pancreatitis you're more concerned of or possible cancer?

Did AM go into your small intestine? or up to?

Doctors can readily pick up on our fears.....dispelling them for some of us works, others not...depending on the explanation we get and what tests are done.

Maybe when you do get a hold of AM's nurse, you could promise to make the call short and sweet.....i don't know what questions she could answer.
Did you not have a breath test previously?

If you did have SIBO..what is the remedy? What bacteria overgrowth specifically would be suspected...or what would you suspect based on what you've read?

It is possible that you are somewhat gluten sensitive.....have you made some changes to your diet that might make some improvements? I don't think there are any tests specifically for that....

How have you been getting on with the psych sessions?

What's happening with McKay?

ARe you regularly taking any acid reducing meds?.......that in itself can help relieve some of your symptoms I would think.

Consistency in some things can definitely help......since I"ve been taking the zantac nightly, it's helped with reflux.

I still get weird heard (as I feel it) fluctuations....it's an unknown at this point, because my heart echo and ekg and pulse doesn't show anything wonky. Although, when I feel it, my pulse is definitely changing to increased.

I can relate to your fears of the unknown....I'm going to do more research on the heart/pulse stuff and see if I can get any insight. I cannot purely put it to anxiety.....but I do know that when I get the feeling, I afterward feel the anxious thoughts and anger come as to what the heck could this be? One day it might get figured out.....am I worried? kind of. I haven't had any stress testing done in the past 25 years...maybe I'll push for that.

So, the answers you want to hear have to be definitive and not "it's nothing"....right?

I think you need to still look at and be continuous regarding some of the small things such as dealing with some of the reflux you'll clearly have from the hiatal hernia, using the Bentylol, seeing if the back pain, etc is consistent during what times of the day.

It's good you're able to sleep.....

If you do the food thing....keep a diary and have a "small" plan to try. Adding something that's more stressful will compound the confusion and frustration....from my perspective.

If you do suspect something...try that. Hey, wpg has a store dedicated to gluten free foods...can't remember the name, but I'm sure it'll be easy to find via internet. They were recently on cky news a few weeks ago.

Hope the day goes OK for you.

quincy
Posted 5/28/2009 1:34 AM (GMT 0)
Hello,

I assume you don't have a wood burning fireplace?? smilewinkgrin   We do. I like the smell of smoke to a point....then it does get tired. 

Yes, I can honestly say that I do have some tendencies in how I deal. It's not always good. I do tend at times to shut down which is by far one of her biggest pet peeves with her husband.  

I envy your day! Am really tempted to take Friday off after getting back from Bdn. 

By the way, appointment was cancelled, but they will fit me in later. So honestly, should I be pushing for more testing...SIBO, Malabsorption, other bloodwork? Or should I back off?  I have never had the breath test done. Further to the SIBO, I've read much on the rel'ship between it and IBS.  Many people have complained of weight loss, smelly gas/BMs, abdominal pain, fatigue...and those are definitely me.  Treatments usually consist of "unfortunately" strong doses of antibiotics or fortunately probiotics. I am just so anxious to get some answers!

Well, I will say that I'm not overly concerned about the pancreatitis...it would be the other.

I believe he went up to the small intestine, not into it. That was my mess up, sure he would have done it if asked. It does bother me that the nurse has not called me back, because of course my tendency is to think that something is up because of that.

Haven't been to any psych sessions in weeks, not sure if that's good or bad. Since quitting the Effexor, psych said "come see me in 6 weeks" I've been faring OK mentally I think, just the odd long drawn out post to my online therapist...Quincy! And the odd "drop the ball" with my wife. Like she says "quit feeling sorry for yourself"

Still have not heard back on my MRI appointment, will give a call next week to see if they have anything yet. I can't imagine that I will see him until after I get an MRI done.

Definitive answers is what I'd like. But if I get an all clear on the "bad stuff", I guess I'll just have to put up with the fact I've got chronic issues that may plague me for years.

Funny I seem to get many of those heart issues too. Likely anxiety for me. My pulse is usually higher than normal, but BP is usually stellar. How is your BP?

I don't have a lot of reflux issues with the hiatal hernia.  But I know that I must start doing some of this stuff on my own instead of always relying on docs.

No hair today? Just a putsky day? Was your husband off too? Hope the rest of your day turned out well.

 

Posted 5/28/2009 4:27 AM (GMT 0)
LOL....NO wood burning fire place, and we were looking to possibly live in Charleswood, but almost everyone uses fireplaces there...so passed quickly on that.

Seems most couples include one that shuts down....it's so much worse, however when it involves health issues. I don't know what the best way to deal with it is except to have someone neutral to listen and help guide discussion. I can relate to it being a pet peeve....but there are different reasons for doing so....we're still learning after 30 years.
My husband's parents are classic after 60 years of marriage and still resentful. Most of it stems around health and nonappreciation, control and stubbornness. I say to my husband...that's our example of where we AREN'T going to be...lol!

I suspected your appointment was cancelled.....hope you get in soon tho. It's good you checked. If you're anxious to get answers, then hopefully you can get in with AM and explain that you need the answers to those things. I don't think there are other body parts left to check out...haha....

Curious how he was when you had the upper scope? receptive? noncommunicative? My doc isn't one for small talk during scopes ....

If you're concerned about the other pancreas issue....you should find out the tests that are needed and see if the doc will do them.

Remember, however...that for some of us when answers are found, there are always other questions around the corner....for some it's not the issues particularly, it's the worry that something else is wrong.
I'm not meaning you have nothing wrong...but it can get to the point where we sometimes fit many profiles but nothing comes up as wrong.

Are you still losing weight?

It would bother me too if my calls were not answered....but I do know how busy they are. I'm more the other way of not wanting to bother them....

There are times we have to draw the line. The other option for you is to go see someone else who will do the tests for you. Do you travel to winkler? I hear excellent doctors there.....

Now, there is a fine line between being concerned and feeling sorry for yourself....can you differentiate? It takes me a while to get off the sorry for myself part, but it sure takes a lot of mental energy to do so.

Chronic issues....not so bad, because one can learn to live with them and know what to expect.

Hey, we'll be all ready for gitt'n old.

My BP was borderline normal/high, but then it's perfect...depends. I haven't checked the pulse/feeling/bp together.
Well, can tell I'm concerned now because I'll have to get myself a bp machine.
OH no, I fit in with the in-laws.

No hair today or tomorrow...I'm creating my plan to purge of some stuff...but one needs a place for it...so I've presented plans for all my hair stuff in the basement and how to reorganise. We're in major reorganisation mode, but it's stressful to make all those decisions. I'm a procrastinator by nature (I call it that), hey, I even have a book on it but I keep putting off reading it...bwahahaaaa!
My husband is working nights, so I forsee me awake for a while.

I'll send you my bill...hehe!

Hope you're able to enjoy your weekend....the weather's supposed to be good for doing "stuff"....nice not too hot.

Hang tough with all the non-answers. The GP might have a plan.

OK, don't you go for the CT?

Yes, best to call and find out about the MRI and how long it usually takes to hear from them.

quincy
Posted 5/29/2009 4:13 AM (GMT 0)
I try not to shut down and you'd think I'd have learned after 19 years of marriage!

Appointment was cancelled but when I said later, I meant later in the morning So I'm in tomorrow a.m.. What to ask? I will see if she has a plan for me. What do you think of the SIBO possibility? Or am I grasping at straws again?

I wouldn't say he was receptive..friendly enough but I think he felt like I was wasting their time. That may be why Nurse isn't calling me back. I do know they are extremely busy but she has ALWAYS returned my calls at some point.

I'm hoping I fit the profiles and have nothing wrong...fingers, arms, legs crossed!!

I've lost weight but can't say I've lost a ton more..I just feel it looks like it and clothes are definitely fitting differently.

Funny thing is I don't really think I'm feeling sorry for myself...I'm just terribly concerned and she does not and will not see it that way. We do need some joint stuff. (therapy that is)

With regards to BP, anytime I'm at a pharmacy I stop at one of those machines. They say they aren't the most accurate but can still give you a good sense of where things are. My psych (who was/is a GP too) told me to check often in my period of effexor and that the machines are fine for keeping on top of things...the minute you start seeing continually higher than normal get in to see the doc. My pulse is usually in the 80's/90's. That can all fluctuate with anxiety etc I guess so does not drive me as crazy as some of the other stuff.

Hope you had a nice day off and got some stuff cleaned up/re-organized. Do you have a hair set up in the basement already and going to re-do it? Or do you go out to a lot of people's homes and do the stuff at home on a minimal basis? So if hubby works nights, your mornings must be late starting with you being the nite owl you are?

I think I'll have to dig deep to pay you for all the free counselling you've provided to me!!

CT is on the 15th. Trying to hang tough with the non answers..some days better than others as you can likely tell.

Enjoy your day tomorrow.

 

Post Edited (ZLSJ) : 5/29/2009 5:15:27 AM (GMT-6)

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