Mixed thoughts about appointment....

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kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/3/2008 6:41 PM (GMT -6)   
Well, I went to my appointment with my NP today (after her consult with my gastro doctor.  They don't like you guys!  LOL   I had told my NP who is very understanding, etc. that I go here for info/support/etc.  Now she says she understands but that they both (her and doc) agree that the "blogging" may be making me more nervous and scared!  BALONEY!
Anyway,after all that I agreed to try the Lialda (1/2 dose) and one Canasa every night as it seems the mesalamines that I said I would never take again are working!  Doctor (who I do respect - just don't always LIKE) says I do not have UC serious enough for stronger drugs.  I have to agree that all mesalamines (except maybe Rowasa) has helped.  I have only been on one Canasa at night for a week and have slowly improved.
AND - he scheduled a colonscopy for Setember 28 and if no substantial improvement when he looks in there - maybe then something more.  He (and I) just know I will develop strong side effects if I have to take anything stronger. 
Only thing I did not like - the NP "implied" that the doctor thinks I am giving up too soon on the medication.  All I know is I kept getting sicker both with Colazal and Lialda (along with Rowasa).  The UC was getting better but I felt like a truck run over me and could not leave the house.  With no medication I can do most of my daily routine.  Every day got worse until I could barely get out of bed.  I had to quit twice.  Well  - maybe it was all in my head -  NOT!
Sooooo, sorry this is so long - surely I need you guys to talk to and no one is taking that away from me.  I will read with an open mind.
AND - I will give one Lialda and Canasa a fair chance!!
And look forward to the colonoscopy - yuck!!
ElaineNY

68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/3/2008 11:09 PM (GMT -6)   
Elaine, I so hope this works well for you. I don't think anyone can say you're giving up too soon on the medication; after all,you're still trying! I also talked to my nurse today (will try to post more tomorrow about all the things she had to say), and she said that proctitis can be very hard to treat, and that you have to give the medicines a while to work. So good to hear that you've seen steady improvement this week.

Best to you, and have a good weekend --
emory
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/4/2008 8:21 AM (GMT -6)   
Elaine, you know your body and if you can't tolerate the 5-ASA's then you can't - it's simple as that. Don't let the docs think that it's all in your head. I was persistant with my GI when I told him that I just simply can't do mesalamines. I used to take them for the longest time and then for some reason my body just decided it didn't like them anymore. However, I don't seem to have any issues with Colazal. This is not a mesalamine but a basalazide. The formula is pretty much the same (delivery method is different) but there has to be something "extra" in the mesalamines that I can tolerate. When I would do Rowasa, I would get severe abdominal pain, nausea and a flu like feeling. I tried and tried and tried again but all it did was make me worse. And forget about Canasa - that turned my semi formed bloody stool into pure D 5x's or more a day. So, not everyone responds the same to these types of meds and sometimes the doctors don't seem to want to believe it. So keep taking the meds and if you still are having issues, don't think that you didn't give it a good go. And be sure to tell your doc that.

Oh and btw, I personally don't care your NP and doc don't like us! lol I don't believe that we are scaring you but offering insight and knowledge to a condition that many docs don't elaborate on. For years and years I didn't know hardly anything about this disease. It wasn't until I got the internet that I started to learn about my condition - that was 9 years after I already had this! Did a doc ever sit me down and explain this in detail?? Nope. I have learned more here on HW then anywhere - including the docs. And now that I know what this disease is about, I know that I am less scared and more knowledged.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/4/2008 10:20 AM (GMT -6)   

Thanks both of you.  I will not stop coming here - mostly for support.  I told the NP/doc that I would not try any weird diets or other medications that they did not recommend.  NP gave me some Digestive Advantage for Crohns and Colitis today to try.  I will try it after I finish my current supply of Align.  She said some have had good results with it.  You know I took Colazal for along time - 6 a day and then increased to 9 a day and added Rowasa.  I am beginning to believe the flu-like symptoms were from that combination - when I had to quit.  I wish the doctor could have seen me like that - at least my husband knows how sick I was. 

You know, doctors look at us "seniors" a little differently than those younger I think - especially newly diagnosed!  I believe they think 68 year old patients don't now anything and they should just follow instructions with no input.  I have lots of input even if I never went to a blog or forum!  NO ONE knows my body like I do.  I told a GYN doc that once and he didn't like it very much.  He ordered a D & C and then after he finally admitted I was right!  GEEZ!

Thanks for hanging in there with me.  I follow you guys - I want to see everyone here healthy and happy as possible.  I now how lucky I am.  I started one Lialda today.  Canasa does not seem to cause me any problems and is definitely helping with the cramping and bleeding.

I am glad I am having a colonoscopy Oct. 28 - that will show is/what medication is helping. 

Sherry - you have in your signature about your back -

epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
What is Skelaxin?  My husband has same problems and had 3 epidurals - did yours help?  He tried Neurotin with too many side effects!
 
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 10/4/2008 3:36 PM (GMT -6)   
Something I would hope all doctors remember about "seniors" is that bodies metabolize medicines differently with age. That can make older people much more sensitive to medication. They should be paying extra attention to your side effects!

I'm glad you're sticking with the forum, Elaine! I love reading updates on how you're doing, and am always glad when it's a good day for you. Like you, I want to see everybody here healthy and happy. I have to admit there are some aspects of the forum that do feed my anxiety -- a lot of people on here have endured a great deal, and since it's early days for me yet, I don't know what my course will be, but being a worrier, it's easy for me to anticipate the worst. That's the only downside. The support here is incredible.
40, female
Dx ulcerative proctitis, 3-5 cm, June 2008 (after 5 weeks of blood and mucous) and still flaring
Canasa 1000 mg suppositories and 2 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, Clonazepam .5 mg (or more) and Trazodone 75 mg for sleep/anxiety
2.5 mg methimazole for thyroid
Trying acupuncture
Osteopenia and other assorted ailments


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 10/4/2008 3:48 PM (GMT -6)   
Elaine,

You know your body better than the doctor does, so if you are getting bad reactions to meds, let him know. My GI recently raised my Lialda to 4/day, where I had been taking 2/day for about three weeks. I thought it was starting to cause a rash, so he cut me back to 2/day. The rash is going away. It could be that higher doses of 5-ASAs are what get you. If a couple of days on the 5-ASAs are making you ill, then maybe they aren't for you. If your doc says that your UC isn't severe enough to move on to the heavier drugs, what does he suggest? That you live with annoying side effects that are as bad as the disease?

I find it humorous that the NP thinks this board isn't the best place for you. Apparently she doesn't realize how UC affects our lives, and how important it is to have a group of people who not only understand, but are willing to discuss all those little details that we don't tell others. Where else can you talk about crap (literally) and have people listen without making faces or changing the subject real quickly?
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort enema, Prednisone (trying to taper down)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 10/4/2008 3:58 PM (GMT -6)   
Skelaxin is a muscle relaxer like Flexeril. But it doesn't make me groggy like Flexeril does. I take 1 Skelaxin at night along with Neurontin because I was taking the combo together during the day 3x's a day and I was a zombie. Yes the epidurals helped a bit with the "electrical" type pain but not the muscle pain I am still in. I am much better though but I still have good days and bad. I no longer look like the hunch back of Notre Dam though! That area was so swollen up I was starting to look deformed.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 10/4/2008 6:27 PM (GMT -6)   
As usual - thanks for your support.  That is why I came here in the first place and to learn some things - you know when the doctor talks about immunesuppressants I now know what he is talking about - knew nothing before.
Brandon - actually the NP thinks coming here for support is great.  She (as the doc said) is concerned about me worrying more about my UC by reading the reports here - she likes the education and support I get here.  She can see what a nervous person I am and on Xanax for that. I am hoping only one Lialda will work for me along with the Canasa.  I keep telling them I only need "children doses" of anything.  I can only take 1/2 Xanax and like 1/4 of antihistamine and they put me to sleep.  I do believe he is frustrated that I can't tolerate the 5ASA medications as they are working - and does not want to subject me to medications tougher on my body at age 68.  Believe me - I cried a couple times when sick from medication - because I wanted it to work so bad!! I tolerated the Colazal and Rowasa more days than I wanted to - waking up every day feeling worse (headache back of head, ringing in my ears, dizzy, nauseated, tired and generally felt like a truck hit me).  Thinking I should have taken them a little longer and then went to emergency room and asked for my gastro doc.  LOL
One thing - Imodium helps me a LOT and has for years when I need to travel or go where there are few bathrooms - or far between.  I have been given a verbal prescription from the gastro doctor to use Imodium moderately as needed along with Pepto Bismal for nausea. 
Have IBS, Gerd and hiatel hernia does not help with what to eat, etc.  I know pretty much by now what I can't eat.  I need to lose weight so trying that right now too - slowly!
You guys are great.
Emory - one day at a time - you are very young and need to find some way to just relax more and live in the moment.  I sure found out that when my husband was diagnosed with lung cancer.  He is doing so well and we are flying November 6 for a week in Vegas and looking forward to it!
ElaineNY cool
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
10/3/2008 - agreed to try one Lialda and one Canasa every day due to my sensitivity to all medications and side effects. Colonoscopy 10/28 to reaccess.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 

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