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ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/22/2009 10:21 AM (GMT -6)   
Noted in one of my posts that I am getting in to see A.M. on Tuesday. Spoke with the nurse at length Friday mentioned some back pain I've been having and she seems to agree with you that I should get some upper GI work done so hopefully that gets the ball rolling for all the tests. Upper swallow, Endoscopy, ultrasound, CT or whatever it takes to find out if there are other issues behind the way I've been feeling.
 
Now hopefully they can find someplace to squeeze me in for some of these things 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/22/2009 12:57 PM (GMT -6)   
Absolutely you need to have the testing done rather than assuming it's nothing. It's not unheard of for one to have upper gastro problems plus UC...not related, but happening at the same time.

You should also ask regarding the antispasmodic in the meantime as well as request the Salofalk enemas...

I'm sure the doc will get you in...asap.

It's good that you're not bothered during the night with the pain...

Seems it's been a constant, and I can certainly relate to the discomfort.
The added fibre can be part of it....I went through a stint last week from having too many oat fibre cookies...OMG...horrific. Not flare related, however..different and very painful. I was on Bentylol, Gravol, Tylenol and thankfully, not having any hair to do..lol! It took a few days to have that finished with. I definitely was concerned that it could be my liver, but it was for sure gasssssssssss.

Keep me posted as to how your appointment goes.

Hope you're enjoying your weekend in spite of the pain. Oh, you could try a half a gravol ... that could help somewhat.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/22/2009 4:14 PM (GMT -6)   
Yeh sooner the better. I'm once again starting to get the worry thing going because of the return of my stomach issues plus the back stuff that has been lingering. I keep hoping and thinking it's trigger points in my upper back shoulder blade area but it can also be referred pain from internal stuff and I don't like the looks of what I've been reading. darn Google!!
 
Antispasmodics are definite must this time. Nurse figures he will likely look at changing my enemas. Salofalk or can't remember the name of the other...it's another steroid one, a bit stronger she said.
 
Stomach doesn't bother me through the night but my back does after 3-5 hours.
 
I will definitely be on here keeping the info flowing.
 
Had a nice time with my boys this weekend seeing how my wife was away. Just a lot of hanging out and stuff, pretty relaxing.
 
How was your weekend?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/22/2009 11:36 PM (GMT -6)   
Hi..I would (STRONGLY) suggest rather than upping a dosage of steroid enema for you to request to try the 5ASA enema...Salofalk. and give it a fair trial.
My personal experience talking..and bias, of course. No shortage of that..lol. shocked

Regarding trigger points, we all have them. Press the right one, and yeow! bingo! devil
If massage helps you, have it....subconsciously, stress or distress will always cause muscles to tighten. For me, it's my jaw, head, neck, upper back, lower back, shoulders and stomach.

Referred pain...it would probably be caused by gas or spasming...unless, of course, you have upper gastro problems...hey, you can start a list like the rest of us.. skull

Great to hear you had a relaxing weekend!
My weekend was OK...unfortunately, my husband is suffering from horrendous face/tooth pain. The dentist cannot get him in until Tuesday...he's using heat/cold/Tylenol/Ibuprophen/ativan to help ease the pain. It could be from TMJ, sinus or a tooth problem....his pain threshold is high..but this has been constant and I know the days will drag on until he sees the dentist. He could call for something "stronger" for the pain, but he cannot take codeine..don't know if the dentist can prescribe anything stronger.

This all sucks because it's his birthday Monday and our 30th anniversary on Tuesday. We went with the family to celebrate ours and two other family birthdays...at Boston Pizza in St. V. Was a nice supper, great service and at least his pain was tolerable through the evening. Not so at this point, however...will be a long night until he can fall asleep. Tuesday cannot arrive soon enough. Now, if the dentist cannot see anything wrong via x-rays...I don't know what the next step will be...maybe Pan-Am (where he's been seen by a doc there)...sigh.

I'm doing OK otherwise. I go see a rheumatologist at the end of March...hopefully to get other stuff figured out.

Oh, just found out my sister-in-law (husband's sister) probably had a mild heart attack some time ago...an EKG revealed that little ditty. I haven't talked to her in depth about it..but I'm disturbed at the fact. Basically, it sucks. sad

On that note, it's another day anew!

quincy


*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 2/22/2009 10:45:56 PM (GMT-7)


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/23/2009 6:11 PM (GMT -6)   

Is the Salofalk a good one to stop the bleeding? Or is it steroid ones that help that? I've only had one BM today and it was a nice blood filled diarrhea type.

Had a deep tissue massage today for the trigger points in my back/shoulder/chest area. I've got them pretty bad there so he thinks it is definitely my main issue but still says that there is no guarantee that there might not be something else going on. Honesty is good.

Sorry about your hubby, hope his pain disappears sooner than later. Yiikes when it rains it pours.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/24/2009 12:35 AM (GMT -6)   
Yes, for me the salofalk stopped the bleeding...remember, I've used them for 20 years. My fist few years of flares were explosive bloody diarrhea, on the toilet up to 20 times a day with white-knuckling bms...yes, me squealing in agony to the point I wanted to rip out my guts.


So, gee, golly, wow (substituted language), it helps!

I would never substitute them for the steroid ones, and you'll never get the complete answer until you try them for yourself.

yes, honesty is good....

I hope my husband's appointment gets results, because I don't think he'll be a happy camper if it doesn't.

Post about your appointment....hope you get what you need from the doc.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/24/2009 9:38 AM (GMT -6)   
I will definitely be asking for the Salofalk then. That is what I've been having again is "explosive bloody diarrhea", not necessarily white knucklers for me and only about 6-8 times a day.
 
The therapist I see specializes in the deep tissue stuff so I find him to be very good for what is ailing me, but once again I have to have some patience with trigger points too because they don't disappear over night either.
 
I saw the other post on the Asacol and I was wondering the exact same thing as to whether it was doing me any good, and I know you swear by it.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/24/2009 6:09 PM (GMT -6)   
I enquired the same thing from my doc every visit..he said.."be patient".

How many asacol are you on at this point?

When did you start using them?

Do you actually take the full dosage daily or forget one or two?

You're not at the point yet to question the asacol yet....at least give it all a fair trial. As well, you're having some other things going on....

Hang tough..what did the doc say at the appointment?

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/24/2009 8:11 PM (GMT -6)   

Well...had the last slot on a brutal weather night so very similar to my 5:30 Friday appointment in the summer. Very to the point.

Asacol - 4x800mg and he says to keep it at that for now. On them for a month and a half or so. (I do pretty well with taking them) 

He still maintains that my symptoms are only moderate and that likely my biggest problem outside of the present flare is the ibs and my stress/anxiety issues. He has prescribed the Salofalk. But kick me in the a** if you will, I forgot to ask about the Bentylol. I had it written down and everything...though I was feeling a bit rushed. It was 6:40 when I got out of there.

I asked about my back pain and how it could be referred from somewhere else and he basically dismissed any notion of that due to the above. He said there was no need to expose me to anything like a CT Scan or anything like that. Didn't feel all warm and fuzzy about that treatment from him but I try to catch myself and think that he is one of the city's best so he must know something, so who can I trust if not him. He did though agree to do some more extensive bloodwork just to help ease my mind.

I can't say I felt great after the appointment, not that I expected perfect answers for every question.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/25/2009 10:46 AM (GMT -6)   
Sucks about the timing...it was horrific last night, especially at the time you left! Long day for you.

Yeah, some things are always put on the back burner for a while....I can agree up to a point that stress and IBS can be the added issue that exacerbates symptoms, but only confuses things sometimes.

You can put in a call for the request....you wouldn't need an appointment. If you do it today, he will hopefully call it in soon. Ask for the lowest dosage.
Say you need some relief especially if it's IBS...

I can relate to the not warm and fuzzy...my doc is pretty reserved. I've forgotten to ask stuff too....that's when I've called and enquired.

Hope the enemas will work for you...let me know.

Hope the day will go well....nicer weather!

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/25/2009 10:55 AM (GMT -6)   
Having a horrible day today.
 
Went and had the bloodwork done and now I sit and wait. (7-10 days I think) It was very specific bloodwork related to my pancreas/liver, Tumor markers, etc. so I am feeling very uneasy. Only after me hounding him did he give into getting these done. I am not able to distract myself.
 
He said I'm much too young to be a candidate for Pancreatic C and that I have no other symptoms, so quit stressing about it.  
 
I am driving my wife crazy and I think she's getting to the point where she's had enough of my "worry for nothing"
 
It sure would be nice to be able to talk to someone without them giving me hell and saying I'm overreacting.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/26/2009 3:17 PM (GMT -6)   
Hi...waiting is most difficult, but you really do have to put that in the future and bide your time with focussing on other stuff/family/wife/work..etc.
Very difficult, but one way to survive emotionally.

I totally understand that your anxiety might be anger because of the doctor's ease of passing off your concerns, but he's done right for testing you, and be pleased with that success.

Try not to turn it around now by using the next week by worrying of what it could be.....it won't change the outcome.

You probably don't have any of what you're concerned about, but good to get a baseline of readings. Please ask for a copy for your future references.

My readings were high for a long time before the doc became concerned....I was OK with that.

I would think that your wife is concerned for you as well....but remember, that you cannot completely make your abscent from your relationship....life doesn't happen one worry at a time.

but, in saying that, I can relate fully....and after learning tools in which to deal, it helped immensely.
I do shut down, but not for anywhere as long as before.

I think once you get the results you'll feel better, but don't waste each day until that point. Maybe writing down your thoughts will help get them out of your mind momentarily.

Hang tough...yeah, I know that's what I say...but it's more hopeful to me than saying knock it off. Oh, I do say knock it off to myself when I recognise my mind is going too fast in a bad direction.

Enjoy aspects of the day and COUNT them as well...yes, maybe document them as well?

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/27/2009 6:56 AM (GMT -6)   

Thanks for the wonderful words of wisdom.

I'm trying hard but having a real difficult time focussing on other things the last while. And I know that all the worrying in the world won't change what comes to me next week.

I go in spurts where I put it on the backburner, then it comes back. (all too frequently) I've been getting very emotional lately, no anger just sadness/fear.

Hope it works out for the best.

It sure would be nice to meet you and hubby for a coffee and a donut one day. The least I could do is buy you a coffee for all the wonderful words you've provided along the way. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 2/27/2009 3:53 PM (GMT -6)   
I'll ask him. what area are you in...we're in WK. Lots of places to choose in the city.

Allow the worry for a short time, then make a decision to do something else. Especially with your kids and wife. Giving of yourself to who may feel put on the back burner is most important...for them...because the feeling of rejection is the worst thing.

The down/anxiety is normal considering where you are with not enough definitive answers to satisfy you. When do you go to the GI or results? Do you have an appointment for that day? Best to do so, rather on the phone and the nurse saying all is OK.

Are you still seeing the therapist? This is a good time....

Hope you will have a good weekend in the deep-freeze...although better than ice rain!

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 2/27/2009 7:16 PM (GMT -6)   

Hey Quincy,

Little better day today. Seem to be doing a better job of not dwelling on things. Just heading off to friends for some homemade pizza.

Couple things..still a good thing to get the bloodwork done because of my fear/anxiety but started doing a bit of searching on my back pain and started viewing some images of pancreas and where they are located and can't really see that where my pain is, is related to the pancreas, (that's what my chiro said a while back but of course I don't believe anybody!) It must be primarily trigger points/muscle knots because I do have them pretty bad in that area and it does feel better for a few days after a treatment, but my therapist said the knots I have would take a fair bit of work to get rid of.

Other thing is I had a nice visit with my brother on the phone (something I haven't been doing much of lately with anyone) and it just seemed to pick me up. Now if I can just stay here!!!

I will get a phone call because they're not sure when the results will be back.

I live in FG. Maybe we can meet in between one day? I'm sure your hubby has heard all the colon/rectum talk!!

Kid's hockey both days so that should keep me going.


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 3/2/2009 6:40 PM (GMT -6)   
Just got off the phone with AM and all the bloodwork came back great.
 
Can't remember all the tests...Lipase, Bilirubin,CEA, Albumin, Liver Panel, Tumor Markers, CA19...I think one or two more and they all came back with normal levels so that is the best news I could have heard.
 
Thanks for being so supportive...you're the greatest! 

Post Edited (ZLSJ) : 3/2/2009 10:11:53 PM (GMT-7)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 3/3/2009 4:00 PM (GMT -6)   
Hi there...sorry for not getting back to you sooner...our computer crashed and we had to get a laptop. I was having crazy internet withdrawls!!!! lol! This laptop and my fingers aren't compatible as of yet (it's so little)...ugh. Oh well, god for my little grey cells.

Awesome to hear your blood tests were all OK....I hope that gives you some relief emotionally for a while.

I talked with my husband about meeting for coffee...that would be nice says he.

We'll make arrangements (I'll go through Sherry to contact you if that's OK)

Well...I'm having a bit of a setback today...dizzy (I have BPPV which is a positional vertigo) and flaring still a teeny bit..so I'm going back to nightly meds.

My husband is doing better regarding his jaw...is getting another mouthguard so that he can speak properly to use at work and other stuff...I think it's all played a part in how I've been feeling.

You're welcome regarding support.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZLSJ
Regular Member


Date Joined Dec 2008
Total Posts : 263
   Posted 3/4/2009 9:54 AM (GMT -6)   

Computer crashing...now there's a crisis these days! Amazing how we've become so dependent on these little boxes and it's connection to the rest of the world. Is it fixable or did you just say to heck with it and buy a laptop?

I do have some peace of mind with the results of the blood tests, as I'm sure with the ones he ran, something would have flagged him that there was an issue. Now if I could just get rid of my trigger points, the cough, and get out of this flare which is driving me crazy. I've got to get past the fact that this won't happen overnight or even for weeks and possibly months. I posted on the Salofalk earlier today. I see that one of the side effects is diarrhea and it appears that it is even worse now that I've started these enemas...does it disappear?

Coffee sounds like a plan, going through Sherry is fine by me.
 
Dizziness does not sound like fun..don't think I've ever had it from an illness perspective, but I am very sensitive and have always been to the spinning around messing me up and I do not like the feeling. (I don't go on rides with the kids)
 
Glad your hubby is doing better with respect to his jaw. That must be annoying/painful as heck.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30393
   Posted 3/4/2009 9:20 PM (GMT 0)   
Yep...computer problems can be stressful, and I'm grateful my husband is dealing with all the stuff (because he understands it a LOT more than I could). It's more the passing of the buck between HP and Costco. Well, actually, Costco has been great, but HP across the ocean technical help doesn't know or believe about the 2 year warranty through Costco and says it's valid from date of shipping TO Costco, not from date of purchase. Yep, frustration regarding a stupid issue = 2 1/2 hours on the phone getting nowhere...

In any event, it's getting shipped today and hopefully will return with brand new innards!

Yes, the Salofalk can cause some diarrhea or loose stool....I find loose stool or diarrhea much easier to go through an inflamed rectum. I don't worry about that at all....but in support of the side effects, I did get worse before I improved once on the 5ASA meds. That's why I sometimes suggest to start at a lower dosage of oral meds and increase if needed.

Hope you're having some improvement....at least retention-wise, etc.

My day on the toilet was 3X in 2 hours with some white-knuckling squealing bms...butt retching ... but nice the feeling has since subsided. I'm definitely flaring, and will have to resume a slower taper once I'm feeling better.

I do some positional exercises for the bppv and am pleased to report today is a good one. Are you saying you suffer from some vertigo/dizziness from your ears or is it a light headed feeling? I don't like rides either..lol!

Hope your week goes well....
quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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