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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/10/2007 6:14 PM (GMT -7)   
Hi, just wanted to post an update for those that have been so suppotive to me along the way.
 
Met w/Nephrologist on Friday and my proteins jumped from 3.2 to 9, which is not good at all.  When I let the Doc know I still had some tenderness from the biopsy, he had me admitted to the hospital after I left his office to to an MRV to check to see if I had a blood clot and they also did ultrasounds on my legs to check my veins b/c of my edema.  No blood clots in my kidney and my veins are fine.
 
I did have to spend my very first night in a hospital, b/c it took so long to get the MRV (a little different from the MRI) just in case they needed to give me some blood thinners which they did not but it was already so late there was no on there to read the test and the test needed to be redone because it was not 'timed correctly' that was at 9:30 at night and I had it redone at 11am the next day (today) and got released today @ 4pm.
 
The doc is upping my Diovan to help the inflammation in my kidneys but still keeping me at the same level of prednisone (I am starting to get moon face) and if that does not help, may need to put me on something else.  I think I do not respond well to prednisone, I think my UC only got better from the hydrocortisone enema's (that is my theory).
 
Well at least I am only having 1-3 bm's a day now and dealing w/this and not 25 disasters a day like before.
 
Also Doc prescribed lasix for my edema but only to take if it get's really bad not to take more than every other day.  I am going to be really good about my salt and make sure to walk 30min a day and drink lots of cranberry juice and see how that will go.
 
Always fun times!  Also, I had planned my Mom's bday for today and was luckily enough to be able to reschedule w/the whole family tomorrow, everyone is just so good to me......I feel like I don't deserve it.
 
Trying to stay positive.  Hope all is well w/everyone else.  xo
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Msterra34
Regular Member


Date Joined Oct 2007
Total Posts : 29
   Posted 11/10/2007 6:33 PM (GMT -7)   
Beth,
I am so glad that you didn't have any blood clots etc. Just to let you know I am thinking about you and saying a prayer--I hope everything gets better REALLY soon for you:) Hugs!
Terri
**********************
Terri D.
Asacol 2x4times a day
Toprol XL 25mg a day for rapid HB
l5-S1 disc rupture in 2004
Thyroid nodules and levels swing in and out:(


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5144
   Posted 11/10/2007 6:41 PM (GMT -7)   
Hey, Beth, that's great news if no. of bms daily have decreased to 1-3! Sorry to read that you're still hammered with kidney issues though, that messed up the 1st part of your weekend. Any chance for you to schedule that other UC gastro consultation in Boston? I posted a message earlier today about a new online IBD article that discusses UC & Crohn's in terms of 5-ASA responders & non-responders, in case it might give you additional info/support. Hope you'll have a relaxing Sunday. / Old Hat nearly 30 yrs with left-sided UC ... [etc.])

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 11/10/2007 7:08 PM (GMT -7)   
Hi Beth, so glad some things are getting better for you! I am thinking and praying, too. Keep the faith :)
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and tapering by 5mg per week  which started on 9/28/07:  40, 35, 30, 25, 20, 15, 10, 5, 5 every other day, 5 every three days, done!
 


happydays
Regular Member


Date Joined Sep 2007
Total Posts : 69
   Posted 11/10/2007 7:53 PM (GMT -7)   
Hi Beth,

I wanted to tell you to keep your head up, i'm glad your bm are much better. Tell mom happy birthday!!! Hope your tomorrow goes great. It's good to have a great family & friends more people should VALUE that. Your in my thoughts. XOXOXO right back!!!
Mild case of UC~04   Left Side Colitis~ 05-06  Pancolitis~ 07
 
6-mp 50mg ~ 1 pill a day ~~ Mesalamine 4mg ~ 2 a day ~~ Iron 325mg ~ 1 a day
Prednisone ~ 40 mg For 2 Weeks then tapper by 5mg ~~ Asacol 400mg ~ 8 pills a day
Bella Alk/PB 16.2mg ~ 8 pills a day ~ Lexapro 20mg ~ 1 a day ~ Birthcontrol ~ 1 a day
 
Doctor Says If This Dosen't Work ~ Remicaid Next ~~~ If That Doesn't Work ~Surgery.  
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/10/2007 7:57 PM (GMT -7)   
thanks everyone!! I really appreciate it.

Old Hat - yes I am reading the article right now,thank you for posting that. I haven't made my 2nd opinion appt yet and I think Mitz is going to drive me there if I don't but I think the treatments my GI are giving me seem to be 'now' following the norm and what I am researching. Also, have a recommondation for a GI at the Lahey Clinic in Burlington which is even closer than Boston and right now the GI and Neph I have are working really well together, so at this time it's on hold for the 2nd but not to say I wont do it and I do appreciate all the advice, I really do, I just hope the advice is still offered even though I haven't taken all of it.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29978
   Posted 11/10/2007 11:48 PM (GMT -7)   
Hi Beth..thanks for the update. You have amazing strength going through all you are, although it's really tough to hear how complicated and painful it is for you. What's awesome is that your GI and Nephrologist are working together, so it seems a good plan to cruise with them for a while.

I hope your mom has a great birthday celebration!

Keep us posted as to how things are going..

quincy xx
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5144
   Posted 11/11/2007 9:07 AM (GMT -7)   
This will sound cynical, but I hope the gastro & neph are working well together for your benefit, not to cover up earlier medical mistakes! (Because mistakes can happen-- even with doctors of good training & reputation & they are loathe to admit them-- whether from egotism or fear of costly malpractice charges.) I am wary of ANY doctor who wants to bombard patients with a whole range of drugs. The kidneys & liver can only take so much toxicity before they start to malfunction. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 29978
   Posted 11/11/2007 1:03 PM (GMT -7)   
good point OH...it can definitely happen...sigh.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 11/11/2007 5:21 PM (GMT -7)   
Everyone in your family is being so good to you and you don't deserve it?

~thwack!~

That's me, slappin' you across the kisser, Beth. Snap out of it! OF COURSE YOU DESERVE IT, darlin'! They love you. The realize you just spent the night in the hospital and are dealing with not one, but two very difficult problems. So knock it off already sayin' you don't deserve some consideration and start milkin' it a bit, would ya, or you'll make the rest of us poor schmucks looks like, well, schmucks.

I am so pleased to read once again that your colitis is behaving itself so much better. Have your protein readings gone down? Thank goodness you have no blood clots. If you're having a lot of edema, does he have you on support hose or is he encouraging you to not sit too long and to keep your legs elevated? I'm unfamiliar with the drug you're taking for your kidneys, but I'm familiar enough with your background to know that I'd be very skeptical of your doctors after the "care" you've gotten from them. And yes, if they don't get this turned around, I WILL COME DOWN THERE AND MAKE THEM REGRET THAT FACT. In the meantime, Old Hat is correct, that they should be working together and I'm glad to see you say they are. If you start to think even for a second that it's time for a second opinion, you run for Burlington or Boston and get yourself a new doc. It's YOUR health, and no one cares about that one iota as much as you do -- except maybe your mom and dad and your husband (if you have one) or significant other, and maybe your siblings (if you didn't beat them up too many times as your were growing up).

You keep getting better, Beth. And I hope the party for Mom was a good one. I'm sure having you there and out of the hospital made it special for her and the rest of your family.

Hugs,
Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

Post Edited (MitzMN) : 11/11/2007 5:30:07 PM (GMT-7)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 11/11/2007 8:16 PM (GMT -7)   
You totally deserve your family being kind and all of that!

Glad to hear things are going better!

Let us know how the next step goes :)

Cheers!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 11/12/2007 8:50 AM (GMT -7)   
I am very scared for kidney funcntion change, that is why I always hesitate to use 5ASA drugs. Did you doctor tell you to check your bmp and ua regularly?       


36 yrs male. From Arizona
 
Took a lot of antibiotics for my sinus infection caused by allergy, Augmentin and triple antibiotics regimen. Now qualilfy to join UC team.
 
Dx in 2007. Proctitis only( party of Ulcerative Colitis). Mild Hemorrhoid. Fish oil 2 capules twice a day, helps. Alo Vera sometimes helps. Propolis helped quit bit, but had to stop due to allergy issue.
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/12/2007 10:20 AM (GMT -7)   
thanks for the bump on the head Mitz!! I was never close w/my family growing up except my Aunt and my Grandmother, and now as an adult we've all gotten much closer, so yes I do deserve it, I just hate having people worry and fuss about me, but I will have to get over that right! I have a box w/foam under my desk at work to help w/my legs and now that I am feeling better, I am going to try to get in 30 min of treadmill time a day and yes, I do have to get up every hour or so to fax, scan, use the restroom, get water or something, so I do get up and move around. I have tried the support hose and it just pushes the edema up my legs and when I take it off it moves around. I have some lasix and the Neph said to becareful with it and not to use more than every other day. So since my edema of course has not been as terrible as it was last week I have not tried it yet, i'm sure it will get really bad again and I can't wait to see the results of what happens.......my own little science experiment. Maybe they will name some rare kind of edema disease after me.... the "betkankle"...

Old Hat & Quincy - you are right, and I will stand up for myself w/my GI and get a new one if I need to. I just left him a message today about how well I am doing and I am waiting to see what his response is about my treatment, I think that will tell me a lot about what I need to know about keeping him for my GI for now. The Nephrologist increased my Diovan from 80mg a day to 160 a day. The 80mg a day was the lowest dose and I was doing ok on that, so I think going from 80 to 160 is a good decision, it is supposed to help reduce the inflammation in my kidneys so the 'little feet' can reattach themselves. I am glad he is doing that rather than throwing me on cellcept or cytoxin, which he has not brought up yet but I have seen in my research as a next step type of thing. I think the Nephrologist is really good and I am happy with him, he always listens well and really takes the time to explain everything to me (even drawing pictures to help me understand).

NIcepeter - i'm not sure what the abbreviations bmp and ua mean?

thanks everyone for your well wishes! I go on a kidney board and this protein going up and down is pretty typical......wish it wasn't. Also, I wish there was a kidney board on here, that would be awesome!
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 2xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

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