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Posted 4/1/2009 6:38 PM (GMT 0)

 

Just about forgot about my appointment with GI Guy today. Hard to believe that I could forget about that!!

 

On the discussion list:

 

Salofalk - Do I restart the enemas? I "think" I'm once again going in to a bit of remission. Bleeding seems to have come to somewhat of a standstill. Metamucil seems to be improving things as well. Only 2-3 BMs a day. Do I risk trying the Salofalk again now that things seem to be under control? Or just stay the course with the Cortifoam and Asacol?

 

Twisty/Burning feeling in my "guts" - It's back again. He has never really given me a good answer for this one. When I read about spasming, it doesn't sound like that's what it is. 

 

Back issues - They are still around. Not sure if I mentioned that the last I heard from them is that due to the fact that there are no flags around any of my bloodwork and I don't present with any other symptoms, they have ruled out gastrointestinal causes for any of my back issues. Go see my GP to follow up if I am still concerned.

 

Smelly Gas/BMs - I know I asked the forum for their thoughts on this but may as well ask the expert.

 

Weight Loss and UC - As I posted this morning, I’ve been a bit concerned with the loss of weight (my face specifically) I haven’t lost tons, roughly 8 lbs but it seems to really show on my face especially the sunken cheeks. I thought I had read somewhere that there could be a liver related cause to this. You may know something about this seeing how you have likely done a fair bit of research on the liver with the condition you have.

 

How is everything else going for you? Is your flare getting under control?

 

Lovely weather we’re having! 1997 may return to us yet.  

 

 

 

Posted 4/1/2009 8:25 PM (GMT 0)
How funny you forgot about your appointment with the GI?....but you have been focussed on other stuff I guess and it's not quite the worry it was in the past.
Hope it goes well.....is it after 5:00 again?

Yep, the weather is sure wonky. I'm not minding the brightness of it all, but hate the melting again. messy, salty and a plain pita.


Regarding the twisty feeling in your guts....ask for Bentylol...10mg to start. I wouldn't care the reason unless it's obvious. For me, I have both IBS and UC...the feelings of UC are pretty obvious, the IBS and food do cause me some discomfort. I can stop the food, but the IBS is difficult to change. I pop a Bentylol...it helps fairly quickly.....

about losing weight...hmmmm, have you totally changed your intake of food? If you're not eating enough, you're not getting enough calories. Remember that with age comes changes in skin collagen and fat/support reserves, etc. I've noticed changes in my face...make-up helps a lot..lol! not an option for you, however..;-)

Does your wife notice the changes? Worry and anxiety can definitely change one's face if it's deeply subconscious.....lots of unanswered questions leads to more anxiety...which may be part of the problem...hard to hide it on our faces.

Liver disease can pretty much be deleted off the list if all your blood tests come back normal. You have to trust some of it....unless something more obvious comes up.
I'll admit when I'm feeling really nauseated, etc....I do check my eyes to see if they're pale and yellow.

Definitely interested in the doc's perception on smelly gas. I would contribute most of it to food intake, stress and then UC if you're flaring. You can adjust your diet somewhat or keep a food diary for a few weeks to see if there's anything consistent. Is it the same weekends as during the week? How about at a particular time of day/evening?

I think if you're having success with the Cortifoam, you should stick with it...You're not out of the woods yet from my perspective....
I would think you could try the Salofalk again....especially since you were starting to flare again when you tried them. Since you're doing better at this time, you'll know soon enough if it's the Salofalk that was the cause of your symptoms...squirt bum, etc.

I'm now starting every second night on the Salofalk...this month's gone fast for me.
I can notice quite a change in holding bms in the morning now....so, I'm still going with low in the rectum inflammation that wasn't quite addressed and hopefully will continue to stay maintained while tapering the Salofalk. I'll stay on every second night for this month...then every third night....etc.

Back discomfort...for me it's a constant, and it could be related to stress, posture, UC, IBS..etc. I haven't seen the chiro for a while...I should go, however. I do take Robaxacet and Robaxin a lot...so, there's comfort for me. But, I'm no way in dire need for the chiro...just for a tune-up.

I do, however, notice the discomfort increases with the low pressure. Yesterday wasn't a good day..lol! I also notice that I shouldn't sit with my knees crossed too often...that puts unbelievable pressure on that area.
But, I've had back pain my whole teen/adult years....so this is actually good considering how much older I am....so something is right.

I do hope the flood predictions are wrong....but it won't affect us directly...just the emotional climate of the news, people, etc is trying...plus past experience.

Let me know how your appointment goes.

quincy
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Posted 4/2/2009 4:10 PM (GMT 0)
Yes, it was a 5:00pm appointment.

It was a very quick appointment as I had made it back when I was in "squirt bum" mode, so I wasn't there for anything specific necessarily.

He finally (and very quickly I might add) prescribed the bentylol when I asked again. Not sure why he was so hesitant previously. Prescrip will be ready today so I will give it a try. Does it provide results early on?

With my weight, I certainly am not eating as much as I was. I have certainly cut back on the junk (beer,chips,pop, etc.) and have lessened my portions quite a bit for most meals. That squirt bum episode I had likely dropped a few pounds for me because to me it was very similar to a colonoscopy prep. So there are definitely reasons as to why I've dropped weight other than the obvious chronic disease that we have. Worry and anxiety are likely contributing to the face issues as well, as my wife has said countless times over the last while, "try smiling, it works". The other part is that I may have been looking like this for sometime already, I'm just so focused on something being wrong with me these days that every LITTLE thing becomes a BIG thing. On that note, I have been seeing a Psychiatrist for several sessions and he prescribed Effexor XR for me to help me deal with my Anxiety/Depression symptoms. (I see you have it noted in your signature.) I have yet to have it filled as I'm a little worried about the side effects/withdrawal issues. I realize that the same drugs can have a different impact on each of us but what can you tell me about your experience with Effexor?

As far as  the smelly BMs and gas, he had nothing to offer. Diet was all he had to offer and I know I did not change my diet for the worse as far as that goes. So I guess I'll continue to gross people out at home with the "barn" smell.

Stick with Cortifoam as required and continue the Asacol (6x800mg) is what he told me to do. Cortifoam only on an as-needed basis. No bleeding, then no need for the Cort is what he said. He also said that if Salofalk was the issue with my "squirt bum" issue, that I likely would be having trouble with Asacol as they are the same drug in a different form.

As far as my back goes, he had nothing to offer other than not to worry about Gastro issues being the cause of anything sinister with reference to my stellar bloodwork. He listed all the things you've noted as possible causes for my back issues. The pain has remained and has not really gotten any worse but only slightly better in that it is not usually causing me to lose sleep like it was.

Flood talk certainly is gaining popularity these days. They are apparently going to be sandbagging the end of our old street on Friday from what my wife heard yesterday. That gets interesting, because outside of sandbagging one large home at the end of the street in 1997, there was never a discussion about sandbagging the street itself. Does that mean they are expecting worse?? As much as I hate to say it, a slow and easy melt is what we need.

Keep dry!

Posted 4/2/2009 7:39 PM (GMT 0)
A fast appointment without waiting too long? Sounds good to me!
Happy to hear you made it home with no "accidents".

Awesome to hear he prescribed the Bentylol....is it 10mg? It will make you feel a tad mellow. It does relax my eyes a bit, but depending on how active I am...sometimes not, sometimes yes.
It might help your back a bit if it's spasm related...

Hope the psychiatrist will help you sort some things out. What dosage of Effexor XR did he/she put you on to start?
I had a week or so of nausea a few hours after taking it...but make sure you take it with a meal...that will lessen the symptoms. It could have been how I was feeling in general, however, and the timing of taking the Effexor could have been coincidental now that I look back. Regardless...I'm sure I'll be on it for a long time...low dosage just to take the edge off my racing/depressed mind which is all I wanted.

It also suggests to take it in the morning...I've switched to nighttime. Makes no difference regarding my sleeping time since I'm a night owl anyway...but maybe I'll consider to change and see if it helps my sleep patterns. Worth a try.

As well, the Effexor may help you gain some weight....I again cannot state whether it's a for sure with me since my age and events (self medicating with Terry's chocolate oranges many years ago) coincided with the weight gain. I've since levelled out...and that's a good thing...but being middle aged and body changes is where I'm at..but I'm enjoying the extra pounds.
I have no concerns about getting off it at this point....it's helped me and I'm truly grateful for it.

Your wife is right about smiling more.....it really helps..even faking it. The changes in facial expressions with subconscious thoughts can be obvious and hard to control. But, smiling and finding a balance of good thoughts with the not so good thoughts does help. I need people to keep me focused...and my clients are one aspect of keeping me in contact. I do require time to myself and much prefer quiet no client time....I just need to make those times more productive. working on it...having to get my butt in gear of another sort..lol!

Maybe for you part of the issue can be the weather....being grey and gloomy sucks. while I LOVE winter, it's been a tad long for most of us.
The looming possibility of flood is increasing as a probable...but depending on where one lives would fuel the anxiety. I feel bad for those who have to contend with it yet another year....but there's noting I can do to help physically...I think the area where we live is till pretty safe...but the sewer system could be the downfall depending on how much rain we get in the near future. Oh well...can't control the weather. I think regarding what they're doing on the river is a learning process. Break up the ice = possible jamming. Maybe too much help isn't a good thing.
Time will tell...but one positive...in Fargo/GF, the river is receding.

Slow and easy melt is always a good thing....without rain, of course.


The Asacol could be part of your problem....but it could also be that rectal inflammation is continuing. I'm puzzled because bleeding isn't only a symptom of inflammation and my suggestion is to continue them until your bms change. I would still try to add the Salofalk (if you have any) to see if you have improvement)...if you are worse, then it's the Salofalk. Could be something in it that's the culprit rather than the product itself.

Curious if your back issues started when you started the Asacol....again, I think it could be a possibility....or just again the fact that you have some inflammation still.

Hope you have a feeling better day.
quincy
Posted 4/3/2009 3:22 AM (GMT 0)
He was quite abrupt actually...almost felt like I wore out my welcome. He is getting tired of telling me I have a moderate case of proctitis and nothing more I guess.

It is the 10mg he prescribed. A bit mellow...so should this be an evening med then? Looks like dry mouth is an issue with this according to the sheet I got. Do you experience that?

I'm hesitant to start the Effexor. I keep thinking I can win the HA battle if I could just get some relief/knowledge as to what it is that is giving me the back issues. Though I may be waiting a while for that.

 I think I could put the weight back on pretty easily if need be. I'm down to 186 or so from 193 before Christmas. (I'm only 5' 6") Ideally I should probably weigh another 10-15 lbs less. Just don't know why my face seems to show it so much??

Yeh the smiling thing would help. I do have so much to smile about, yet I know I haven't been doing it anywhere near as much as I used to. Must loosen up, must loosen up! I like my quiet time too, too much according to my wife. And yes similarly to you I need to get off my butt and get some other stuff accomplished, perhaps the weather has something to do with it.

Watching the news tonight sounded a bit more encouraging on the flood front. Things may not get much worse than expected even with all this snow is what the flood forecasters were saying.

I was certainly debating in my mind whether or not the Asacol was having any effect on me, but now in the last week or so I've seen a change. Perhaps it was the upping to 6 a day that helped, not sure. The Metamucil has done wonders for me, there now appears to be some substance to the BMs.  

Back issues and Asacol crossed my mind but I started the Asacol in early January and the back issues started late December....close.

I feel so fortunate to have found this board with all the great people and then lucked out even more finding a fellow Winnipegger who has such a wonderful grasp on all the stuff I've been going through. Thanks once again for allyour wonderful words!

 

Posted 4/3/2009 5:51 AM (GMT 0)
Hi there.....I can relate to some appointments...not that my doc is curt, just obviously busy. I've learned to not ask too many questions that I already know the answer to in those instances....but there are times when I'm frustrated and overly concerned about a synptom and he seems to say something that eases things...and always states that if it it gets worse to come see him again.

I think you have to accept the fact that your diagnosis is probably correct....(many of us have back issues with UC..either directly related or not) and you haven't yet dealt with all the inflammation...still working on it. You'll have back pain symptoms, and if it's not clinically valid on a test, you can still have some discomfort related to a flare.

Are you using the Cortifoam nightly?

Do you take any Tylenol for back discomfort? Does it help?

You had a scan of your back..right? is it lower or mid?

How about the trigger point therapy....or maybe you could consider accupuncture...there is a Dr. Yan on Portage..I hear he's awesome...my sister and BIL see him on occasion.

You don't have to do the Effexor if you don't want to at this point. Sometimes just having something that "could" be helpful stress-wise. See how you do and how your mood is. Since you're seeing a psychiatrist...hopefully, he's giving you time for discussion as well instead of only meds. You may find that you don't need it at all...just more help in figuring stuff out and tools to deal.

The Bentylol may have given me a bit of a dry mouth, but it's no worse when I take it than when I don't. The Effexor did for a few days when I first started to take it, but again, it's no worse than it was before I started to take it.
Yeah, take the Bentylol in the evening or just before bedtime...at least to start.

Seems your weight issue is maybe more of an emotional connection of what you see in yourself than what you are used to seeing. Stress does crappy stuff to us...and some of us show it in our faces more than others. Maybe if you don't have a beard or moustache (facial hair)..grow and sculpt to change the shape/perception of your face, etc?

Smiling/laughing helps a lot...sense of humour is a good thing. I remember that before I was on Effexor, my sense of humour was in the toilet. Depression definitely took over. The Effexor helped...so much so that with some things I'm apathethic. Depends on how a situation affects me tho...and while I am always pretty serious about stuff, I'm learning to not take everything as such. Some people's humour sucks and I'm only tolerent of it up to a point...it depends on my mood. I find, however, as it seems as you do, that when I have answers I tend to not worry as much. But there aren't answers for everything .... to our satisfaction that is.

I think the weather has affected many in our fair city. I have to lighten up while driving..trying to miss all the potholes. Sheesh...as long as we're getting IKEA and another mall/theatre and another stadium...who gives a hoot about the infrastructure. That ticks me, however....But, with the snow, everything looks much brighter..once it's gone and everything is wet, dark and grey and dirt splashed...ugh. kind of like my car..haha.

It seems you're still having progress, did you mention it to the doc? So, you're on 6x800mg daily now? no diarrhea? I'm thinking it's more the flare that caused you some of the squirt problem than the Salofalk.
Good the Metamucil is helping...it all takes time, but try to maintain some consistency (pun) regarding meds and fibre, destressing and yep..laughing/smiling.

Glad you found the forum and are finding it helpful. We all need support to help get it all figured out on whatever level. I learn something new from someone daily.
It's nice to talk to someone from my neck of the woods as well..

Hope you have a good Friday!

quincy
Posted 4/6/2009 7:38 PM (GMT 0)

Just getting so frustrated AGAIN!! Had a great start to this past weekend and just let it all slip away on Saturday! I’m feeling so frustrated. (This is likely a post for some other forum, so sorry I’ve engaged you in this issue)

I've been having all kinds of things getting the best of me.

- My hands and feet seem to be a bit numb and tingly the last while. Not keeping me awake or causing any issues with movement (or lack of) but just "there", kind of like my back pain. Now add Diabetes to my latest list of issues/worries...Aargh. I just had all the regular “fasting” blood work done 3 months ago so I’m sure something should have flagged that there was an issue at that point.

- Back is giving me grief. Pain/discomfort is no worse then it was when first mentioned, it’s just that I still don’t know what the heck it is. No, I haven't had a CT scan...Chest/Lung and thoracic spine/cage x-rays and of course the previously mentioned blood work.

Funny how none of this relates to my UP...yet I guess it is indirectly.

Sorry for the whining!! My wife is getting tired of me and my self-pity.

Posted 4/6/2009 8:00 PM (GMT 0)
Hi there....not good you're feeling as you are at this time.

Well I just checked out a few sites on tingling hands and feet....and one on Diabetes..I have most of the symptoms..lol! I don't have diabetes, however, the doc does check it out often.

How much are you having anxiety? That in itself can cause the symptoms...especially if it's not keeping you up at night.

When do you see the psychologist next? How about the psychiatrist?

I can relate to having it feeling like it's slipping away.....been there lots of times.

I think you should possibly get an appointment with a doctor at the Pan-am...especially since it affects your back, hands and feet.

It could be that your D, calcium and B levels are a bit low....distress can really suck them from our bodies fairly quickly.

I have no problem with this thread....I can relate, but I will tell you that believing it's things that it's not and the worrying that the docs missed something can very well create a scenario that no one can fix easily.

Here's a little ditty.....have you tried breathing into a paper bag a few tines? slow breaths? I just read that anxiety/hyperventilation and shallow breathing (which we do when our brains are thinking a mile a minute) can cause carbon dioxide decrease...which in turn can cause tingling in extremities.
I know when I have slight tightness from asthma, I take in a slow breath and hold it for 5 - 8 seconds then let it out slowly and it helps relax my airways.

Maybe one day you and your wife should go to your psych appointment.....I can understand how she feels, however....probably lost and not able to help.

Call the Pan-Am...it'll take a while to get in, but should be worth the time waiting.

How are you doing UC-wise?

quincy
Posted 4/6/2009 9:03 PM (GMT 0)
I am truly beginning to realize that I've got this whole health anxiety thing happening very bad! From what I can tell, it does seem to be a somewhat common issue (anxiety) for those who suffer from IBDs, IBS, etc.

I can't really say I have many of the other common symptoms that pop up on the diabetes end of things other than being tired, which is a symptom of almost everything out there.

Anxiety appears to be attached to me for every waking moment. Sleeping? Well I have been taking some sleep aids (zopiclone) to help me along, which I'm not particularly keen on, but the psych says that at the end of the day...I need sleep.

Once again, so sorry to the rest of the UC Forum group for essentially creating an anxiety thread out of this. I do feel like things are slipping away on me. As mentioned in my earlier post...the UC issue seems to be so secondary to me right now.

Pan Am is likely a good idea...I just feel like such a drain on the system, yet I guess I best make sure to look after myself first.

I will have to practice some breathing/relaxation techniques to see if that provides me with some relief.

UC wise, things seem to be settling in. 2-4 BMs a day, somewhat formed, no noticeable blood and the urgency has basically disappeared. I now know better than to do anything silly like declare I am in remission.

How was your weekend? The weather looks like it is finally taking a turn for the better, hopefully our river holds up.

Posted 4/7/2009 7:58 AM (GMT 0)
Good morning! There definitely seems to be many of us who have anxiety and IBS and UC/CD. I think eventually we reach our coping limit and all hell breaks loose, basically. As I mentioned, I've been there many years ago and it was very difficult to even hear the word anxiety mentioned.

But, I know I've come by it honestly...my mom and dad both smoked/drank and fought to deal with theirs. Not a happy place a lot of the time. As they aged, indivitually because they divorced, they/we still had issues. And I was the one who sought therapy because it seemed I was the one to blame.. They both died before I could declare any sort of closure, but that's when I started to actually heal....go figure...therapy helped during all that process and long afterward. I understand them better now that I'm older...nothing like connecting eventually.

I don't have a point about that I guess, but I do know that I don't want to go back to how I was before. I'm not afraid as I was...maybe that's partly to do with age.

With anxiety centred thinking, having answers is helpful, but it only goes so far. It's like a bargaining...,if it's this way I'll feel like that...if it's that way I'll feel like this..etc. It's like a constant that will never be satisfied...thought processes and physical reactions gone amuck. For some, there's even comfort...maybe almost like an obsession to find the answers where none may exist, only options for a reasonable facsimile.   Sometimes it just boils down to acceptance and options of how to deal..because I don't think anxiety will ever go away, but we can find ways to change our thinking and to talk ourselves out of going on the merry-go-round all by ourselves again...it's talk with a different agenda.

I have moments where everything makes sense. It's so fleeting that I try to back up my mind and search for it..like a knob on a radio. Nope not there.. I think it's just a feeling of happiness or contentment or quiet or whatever...it feels good, but I have to find why. Drives me bonkers..lol!

It's good to hear that UC-wise you're doing better.....you're not in remission yet., count the improvement as a huge plus and you're getting there.

I was busy Saturday with clients and shopping, Sunday was quiet. This week is busy daily..which is good for me to get out and about. It'll go fast methinks. I see the rheumatologist on Tuesday,
My husband is home sick from work with laryngitis...he's been looking after himself rather well...I'm happy. He talks the entire time at work, so doesn't work with no voice....

Hope you make an appointment with the PanAm...hopefully they will help with the tingling hands and feet. It can be so disconcerting....

Hang tough...it'll eventually get figured out...but nothing seems to come quickly with people who have multiple stuff to deal with.

I tried the zopiclone in the past..It seemed to work well as I remember, but I'm a lost cause regarding sleeping. If I fall asleep in the evening, I'm basically up till now anyway.

i've given myself a 3:00 limit...so, working on it.

Hope the day fares well for you. The weather is hopeful but that's never a guarantee, and who knows that the darn river will do.
Sunny and cool is still the best I think...
I see on the news that other areas are getting whollaped with storms...but it's not unheard of.. hey, it's snowed in June in Winnipeg many years ago...

quincy
Posted 4/8/2009 2:59 PM (GMT 0)

Just a quick one here..bit short on time.

Go to the GP yesterday and I guess he really has dismissed me as an anxiety stricken patient...he told me to go to the Mayo Clinic and spend $15,000 to get every possible test done, then maybe I'll be satisfied.

What do you think of that?? 

Posted 4/8/2009 3:05 PM (GMT 0)
Your GP has made me angry and sad at the same time.

I am sorry that you received such an inadequate response to your concerns. We all deserve better medical attention (better treatment from our fellow man period) than that.

Time for a new GP?
Posted 4/8/2009 7:26 PM (GMT 0)
Yeah, I agree that it's time for a new GP, and it seems he;s proved is a total butt-head over and over again....you'll have to fill us in on the details of what the topic of discussion was.

You do have anxiety....that will show as an obvious. Some doctors cannot see past that, but sometimes that's what truly rules and it's difficult for us to express the tests for answers we need in order to move on short of therapy, meds and the will to take the next steps of acceptance. It's very complicated, and doctors are limited in many regards.

How is your day otherwise?

q
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