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Posted 9/13/2007 1:15 PM (GMT 0)
Hello there - I just had a thought...to those of you out there who may have a suggestion for me to incorporate into my oodles of questions for the Mayo Clinic that I might not have thought of please post. 

Based on the info in the signature below and meds etc. there might be something here or there you might think of that might be good for us to ask.

As it is I have a packet from his GI here and so much I am bringing -- I hope there is sufficient time to go over all of this and the many questions I have.

I assume in the course of conversations and info from the various professionals some of the questions will already be answered along the way that I can take notes of.

I did up a spreadsheet with all kinds of categories relating to BMs charting day, date, time, urgency, pain level, consistency, foods eaten to show any correlation etc. I figured two weeks worth of that info to have on hand if needed.

I have other lists - additional pain meds when needed, how long he is able to retain the Colocourt........more lists than I probably need.

I also have various info from Healing Well and his different meds and if something else might work better.

I know it is probably OVERKILL what I have but I just want to try to be prepared for them and also be prepared for us.  This is not a hop, skip and a jump away for us and hotel stays are needed so I want to max out on this first of probably many visits there.  Future visits will probably just require overnight stays.

According to the hospital Dr here in May and our GI he doesn't seem to be a the point of surgery and remission is the goal.  But as I expressed in another thread recently we really need some honest opinions on how long does he go if remission is not successful and end up with a host of  other problems from all these meds.  Also if he is a likely candidate now for J-Pouch but down the road maybe not then doesn't that influence a decision for surgery?  Plus he is a relatively healthy strong 61 year old guy.....as he gets older and has this longer won't that affect his being more frail???  I know I sound like I am advocating the surgery route ....  I'm really not.  Just scared to put something off that might have a better chance now than later.

We are relatively new to this in comparison to some of you out there.  Sorry for all the questions but I am really getting a bit anxious and nervous getting prepared for this for him.  THANK YOU!!!!

Posted 9/14/2007 1:20 PM (GMT 0)
I'm bumping this so it doesn't get lost in case there are any suggestions out there
Posted 9/14/2007 1:32 PM (GMT 0)
I think you have done a great job of preparing questions and providing information for your appointment. The only question I would add is in regard to prednisone use. Research has shown that if a patient cannot be successfully weaned off prednisone after 4 months then they are considered prednisone dependent. The question for the GI is, how long would he/or she recommend you husband stay on that drug in hopes that the Imuran kicks in? For example, would they think that he should be able to succesfully wean off prednisone after six months of Imuran, and if the answer to that is "yes" and he can't get off without flaring, what next? Long term side effects from prednisone use are scary and should factor into whatever decision your husband and doctor make.

Something else to consider in your conversations is about quality of life. I cannot tell from your posts whether or not your husband is working or engaging in any activity or if he is just basically home sick. If he is home sick I would really lay that out and explain to the GI how long he has been that way. Quality of life is huge and your husband should not be having to sacrifice living his life to floundering with UC.

Sue
Posted 9/14/2007 2:18 PM (GMT 0)
Hi Sue............his current GI has categorized him as "steroid dependant" so I am very concerned about not only his being on the prednisone that has already induced some osteopena in the spine for which he is now taking Fosamax weekly for. Based on info I have read here we are doing a very slow tapering....he started on the 40 mg with the Imuran mid May. He is about to start 17 1/2 mg prednisone and then 15 after 10 days then 12 1/2 and my question when he gets to 10 how long should he stay on that and then maybe taper by 1mg amts????? We'll see what the Mayo clinic thinks as well.

Our goal and hope is to get off the darn prednisone once and for all. So many of the side effects from that drug he has had and does have and hopefully the other meds will be able to do the job.

I posted elsewhere a little bit ago.....in the overall picture he is having more better days than bad ones. The problem is his reliance on the pain patches (every 72 hrs) and morphine sulf every day. If he gets a really painful day then he will take a darvocet to take the edge off. This is what concerns me too. However if he didn't have the pain meds he would be in bed most of the day otherwise and really miserable. The pain meds do not seem to make him "spacey" or out of it. He tolerates them fine - but is there an addictive side I need to worry about. He tells me to stop worrying - it is what makes the difference in being able to function or not and I can't nag and argue about every single thing. I am constanly at him reminding him of this or that or sharing info and news from HW which he is very receptive to.

For instance this week - Sunday was not a good day and we were hosting a party for a friend (he should have taken a darvocet at 1pm and waited till 3pm when the party was in full swing and forget it - it just didn't help. ) He woke up Monday feeling awesome, no pain before, during or after BMs - did errands with me - we had 2 couples over for cards that night and he was his "old self". Tues was an ok day - bearable with some discomfort - Wed played golf - Thurs went out to our town square to see a political appearance of a candidate and played golf later. Today feels rather good and we have a Dr appt this afternoon. Now as good as this week was after dinner he is kind of wiped out and goes to bed and rests and watches TV for the remainder of the night. HOWEVER regardless this was a great week overall. We kind of take what we get and try to be grateful for it.

So when he gets a really miserable day and we look over what did he eat or drink in the past 24 hrs nothing seems to have any correlation it is confusing. So I guess sometimes it is just an unpredictable thing even though all things being equal it will act up.

Maybe the Imuran and prednisone tapering is starting to do what it needs to but the real encouraging thing will be when he does not need pain meds to keep him functional.

The label of "steroid dependant" does concern and confuse me in this overall picture and not totally understanding if I am being too niave and optimistic about his getting off it and being able to stay off it.

Not sure if the Mayo clinic's regimine will include an appt with a colorectal surgeon just for FYI and a dietician for some helpful hints most of which I have already gleaned from here. (If he hears it from the "professionals" then maybe it will make even more of an impact.) If not I have those questions as well.

In comparison to May when I had to bring him to the hospital he certainly is so much better. Of course everyone wants to get their life back and be able to do what they were able to do before this hit full force. His stamina, energy level, fatigue, loss of muscle tone he would like so much to try to get a handle on. The most physical exertion he can do is the golf and he only plays the shorter executive courses and he is totally wiped out after. He will apply for a handicapped sticker for the golf cart and that will cut down on some of the walking which should make him less fatigued. Once the temps get a little cooler that should help too.

So I guess he is on the road to something right now...not exactly what. I wonder if the Mayo will want another colonoscopy even though he had one May 5th or so to see the progress of things. I kind of hope not as I am afraid it will undo things and put him in another flare possibly. So that has me kind of worried too.

Thanks for the prednisone advice as I had that as a question but I will make it more detailed now.
Posted 9/14/2007 3:10 PM (GMT 0)
The most difficult and unsuccessful part of the prednsione taper is from 10mg to 0mg. Symptoms of withdrawl at these levels can induce "UC" like problems, fever, fatigue, diarrhea, etc. So be aware of that when the time comes. It can get very confusing as to whether the flare is returning or it's just withdrawl. O doubt they will order another colonoscopy, maybe just a CT scan with contrast to see if the disease has spread.

I remember those days, charting food intake, bms, and how I felt. I found that journal recently and read it and got very sad. I know how awful your husband must feel and how taxing this is on you, the caregiver. I hope the Mayo can evaluate his case and provide him with a regime that will induce remission.

Sue
Posted 9/14/2007 9:17 PM (GMT 0)
It sounds like you've got a lot there! Good work :)

My only suggestion is to have a condensed copy of your "findings" to give to the doctor - possibly as part of your husbands file. It will help if he can take a look at things while you are discussing them. Also, I have heard that some people have faxed their questions to there doctors ahead of time. I'm not sure if this would work for a first visit though... Might be worth calling and talking to the nurse.

Best of luck with your travels!
Posted 9/15/2007 12:27 AM (GMT 0)
I'm excited for you and your husband to "get it all out" and get some better answers! You've got a lot of "data" that I'm sure the Mayo Clinic staff will really appreciate. Can't wait to hear the news and you both to have a safe trip and fun during your travels!
Posted 9/15/2007 3:26 AM (GMT 0)
UC wife

I am glad you and your husband are getting the opportunity to go to the Mayo Clinic and get questions answered,

After living with this disease for 46 years, much of that time feeling quite isolated when it came to talking to others, it is reassuring to know that people here and the clinics are asking and hopefully answering questions.

I was on prednisone for several years. Heavy doses when I was first diagnosed and then on maintenance for a while. At first they were pretty sure they were going to have to remove my colon within a year. When I went back into the hospital, they changed their minds saying my colon was healing on its own and I went from pancolitis to left side only. Anyway it seems as though remission can come and be quite significant.

Of course the good thing is that the surgery is so much better now. But it is still surgery.

For whatever it is worth, having taken prednisone from qge 15 through my twenties...steadily for about 5 years, and then on and off for a decade, at 61, I seem to have suffered only minor negative effects. Moon face did cause some stretch marks on my face and body. And I did have the start of osteopena but as I started walking a lot, my bone mass has improved. I do have odd lumps at the wrists and ankles. No one seems to know what they are or if they were caused by the steroids.

I wish you luck. I am looking forward to what you may learn.
Posted 9/15/2007 3:54 AM (GMT 0)
Insofar as the prednisone goes I am really concerned and worried about the low tapering to zero myself ( and all hell breaking loose) and have outlined a series of questions for his GI this Monday and will also need to confirm with Mayo clinic...my concern is two fold.

When he gets to the 10 mg.....should he stay at that for a length of time and not just keep tapering at the 2 1/2 mgs every 10 days. Reason I say this is he will be at 10 mg on 10/11th which is the day before we leave for ARuba for 2 weeks. I would hate to be away and have the lower end of the tapering complicate things.

Also if the Mayo clinic decides Oct 1,2,3,4 to make any kind of aggressive medication changes I am going to ask them if it makes sense to do so when we will be out of the country and would it make sense to institute when we return. At least the regimine we are on now we know and understand it (for the most part). We return on the 26th and if we need to begin any kind of re vamping then at least if we are home and things go screwy we can make tel calls and have our doctors and hospitals nearby.

Does that make sense or am I being super paranoid???
Posted 9/15/2007 2:30 PM (GMT 0)
UC wife,

One mistake I made was tapering when I did not feel any better, so my advice from what I learned was to taper only when you feel better. It seems as though your husband is not under control. When I asked my GI for pain pills he said no he wanted to get my disease under control. Now I am on 250 mg of imuran and 20 mg of pred and will start to taper again when I feel more stable. Stable for me means not as much pain from inflammation in my colon.

Do you know what the protocols for treatment usually are at the Mayo. Do you know if they do anything different than what most of already know about.

Porclein 250 mg imuran, 20 mg pred. fish oil, vsl and other natual remedies as well as
Posted 9/15/2007 5:40 PM (GMT 0)
No I really don't know the protocol there at all. I got the registration packet to fill out and some other paperwok that needed to be mailed in.

The Physician's Information sheet was NOT to be mailed prior to but brought with us to the initial consultation which I thought was odd. I assumed the Dr might like to have that beforehand to acquaint himself with the case somewhat. Evidently that is not the way it is done. We have hell and all to accomplish in that hour although if more time is needed supposedly at the end of the day the Dr will meet to tie up any unfinished business/questions.

I know time is money but I hope it is not like a factory and assembly line just going from one thing to another. I've heard good things so I am sure we will be given the time needed to discuss back and forth what's been going on and where we are at now.
Posted 9/16/2007 4:28 PM (GMT 0)
I would not change meds just before your vacation! Stick with the same pred dose - you don't want to "rock the boat" while you are supposed to be out enjoying yourselves! There is time to change it when you get back - why worry about different doses while you're gone...

I hope you have a GREAT trip!
Posted 9/16/2007 4:51 PM (GMT 0)
I totally agree Dakota and hope the Dr's will humor us - he is at the 171/2 now - he was thinking yesterday since he changed on the 11th to the 17 1/2 maybe there is a difference...however..he had basically a really good week with a few blips - yesterday so-so and today he is out playing golf. So I don't think there is a real difference...I'm charting the BM's etc/ So maybe when he gets to 15 stay there until after we get back which is what I am going to ask tomorrow's dr and the Mayo Dr's.

If Mayo thinks the Imuran should increase could/would that be any cause for concern do you think? It has been my feeling from all I read here that his current Dr is maybe being too conservative and she will defer to the Mayo's decision in that regard. With the prometheus results she feels fine with keeping him at the 75mg but my question is - is a higher dose if deemed appropriate help with a remission even more???

My carry on will have all the meds in their huge bottles and I think I will have to pack the colocourt in a plastic shoe box container in the luggage as it exceeds the foolish liquid amounts to carry on the plane. What a pain in the you know where. It was so much easier when he could just put all his meds in the weekly pill containers. He would take 3 weeks just in case we were ever detained for a few more days over our 2 weeks. Travelling now is certainly more complicated but necessary for all of our safety.
Posted 9/16/2007 5:03 PM (GMT 0)
Oh Dakota - I did the condensed listing last night and went over it with him today. I have all the various back ups in separate alpha order if more in depth info is needed or questioned. I finally took all the scraps of paper with all the notes and got that done.

Hubby is in awe of everything...if it was just him doing this - he'd fill out their forms, mail them in, show up with his blue cross card and just say "help me out here".....lol. He wasn't even aware of half the notes and questions I had and once I explained everything to him made perfect sense.

He owes me BIGTIME.....lol.

I am certainly looking forward to this year's vacation and if he at least stays as he is he will basically have a good time. He will need to take 3-4 hrs to rest early to late afternoon each day but that will not interfere overall. My sister, bro-in-law, neice, our good friends and 4 others from here are there the first week and will be a lot of fun. I'll be kept busy. The 2nd week if he is in the room off and on we have many couples at this resort we timeshare with each year so I will not be lonely by any means.

(Last year was a rough one for him - he was flaring so badly and not on a regimine as he is now to kind of give him some normalcy so that was not a good trip. I wanted to cancel but he insisted he would be feeling the same here as there but I don't think in retrospect we should have gone.)
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