Posted 6/25/2008 11:54 PM (GMT -6)
Hi Lisa,
I agree with the others here about the Prednisone, it's not good to be on it when you are about to have surgery due to the fact it slows the healing process and can make you more likely to get an infection. I am concerned about your sunflower seed comment, are you saying you eat them?!? I hope not. I stay away from all seeds because they seem to tear at my guts so be careful. I hope the doctor can help you with your kidney problem soon rather than waiting for the Prednisone. Make sure you keep up with your dose of Asacol, I used to think I was taking "too many pills" so I lowered my dose on my own and have been paying for it ever since. If you have any other questions, please ask. Sorry for all you're going through and I hope the Asacol helps you.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08

Posted 6/26/2008 7:50 AM (GMT -6)
Hi Lisa,

I'd also like to recommend using the probiotic, "culterelle", but also some changes in diet as well. I was able to heal my colon of ulcers by avoiding foods that contain sugar, which meant no candy, cakes, sodas, cookies, etc., I also avoided milk, cheese and excessive amounts of starch. It's not an easy diet and it may or may not work for you as we are all different, but it's worth a try...my GI was shocked when he performed the colonoscopy only to find no ulcers...since then i've been med free...no more Remicade.

Good luck,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

Posted 6/26/2008 8:46 AM (GMT -6)
Hi Lisa,

All good advice above!!! I was curious about your kidney disease, what disease do you have? I also have kidney disease, Minimal Change Disease or if I don't respond to meds soon, they think I may have FSGS, which is an eventual kidney transplant.

There is a forum at inspire.com it is in the Nephcure section that is mostly for FSGS and MCD but since I am not sure what you have, it may be a good place to go for info and/or empathy.

So sorry you are dealing with all this. Please keep us posted!

When I found out I might need a kidney transplant I had quite a few people offer their kidneys and I was grateful and let them know in a joking way that now I have a waiting list and since I want the best one I will have to have some kind of obstacle course for them to pass. Though who knows if any would be a match??

I wish you my very best!!! Take Care, stay strong. We can't control the things that happen to us, only how we deal with them.
 
Also, ask your Doc about Rowasa enemas.  I have pancolitis and am on steriod e's but only b/c I cant take Rowasa.


Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

Posted 6/26/2008 1:51 PM (GMT -6)
Hi All,

Thank you so much for all of the information. I finally heard back from my urologist who is really against the prednisone. He spoke with my GI who is very adamant that I take the prednisone. I had a formed BM this morning with almost no blood at all. I called up my PCP and expressed my concerns and he feels that I should hold off on the prednisone and leave it up to good ole Mother Nature - at least for the next couple of days.

I'm going to GNC this afternoon and am going to look for the culterelle and also Omega 3's. This is all so new to me. I'm a junk food junkie and am going through major withdrawels!! LOL All this "health" stuff is freaking me out!! LOL Will I ever have another whopper??? :-(

Princesscolon - I haven't eaten the sunflower seeds. I saw a post that claimed spinach and sunflower seeds were responsible for his/her remission. I'll try anything at this point. I actually ate a few mixed nuts last night and had one of the best BM's I've had in the last month. Was it the nuts? Who knows? One thing I've learned is that this disease is anything but predictable. What works today might tear me up tomorrow. It's nothing but a guessing game.

Beth75 - As far as I know, I don't have kidney disease. They spotted a small mass when giving me a CT scan for my colon. I don't think it's attributed to the UC, but you never know. The mass could have been there for years or days. They can't biopsy it because it is completely confined and they don't want to disturb it. It just so happens that 90% of kidney masses are malignant, so they are treating it as if it were cancer. I have to have the entire kidney removed and they can't do it laporscopically (sp), so I'm looking at pretty significant recovery time. On the brighter side, both of my kidneys are working perfectly, even with the mass. I'm sorry about your kidney problem, but I don't think mine is anything like yours. According to my urologist, once the kidney is removed, I will live happily ever after. I guess we'll see!! LOL

Thank you all for your support and advice. I had you all in the back of my head when talking to my doctors today. There's a saying that I always think of in times like these. "When you see yourself in others, it's not such a lonely road." Thank you for making my road less lonely!!

Lisa E.
Posted 6/26/2008 2:00 PM (GMT -6)
Lisa, one single question to ask each of your doctors:

"What's the worst that can happen if I don't (take the Prednisone) (have the surgery right away)?"

Oh, a second question:

"What's the likelihood of that happening?"

This should give you some information to help in your decision. Remember, ultimately you're the one who decides whether or not you will follow any treatment recommendation you are given.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Posted 6/26/2008 3:26 PM (GMT -6)
Lisa,

Thanks for posting, you are the first person I've heard of that has kidney issues with UC I have Chronic Kidney Failure stage3, basically I have about 27% of my kidney functions left. . . the rest is scared and never coming back. I can tell you that life with compromised kidneys can be different but NOT bad at all. I only have to take one medication for them and that's just to help them stay where they are it's good that your doctors are willing to talk. I have to ask tho, have you gotten a 2nd opinion or had the other kidney checked? They reacted to a spot on my grandfather's kidney similar to the way you are saying they are reacting to you and when they took the whole kidney out they found out there was just a cyst that was benign. Too late they found out THAT was the one kidney working and the other was only functioning at 12%.

As far as the Prednisone, I have to agree with Judy . . .ask what the worst case scenario is.. . . make up your own mind. . .the doctors are there to serve you so if it's your wish to skip it for now pending the surgery so that you have a better chance as a better outcome then that's your right!

Good luck and keep us posted.
Kim ~ Mom of Nathaniel aka "Peanut" 18months old
========================
I'm a married 36 yr old mom and here's "The list "
- UC 1997 currently unmedicated was on Colozal from 2001-2007
- Stage 3 CKD (Chronic Kidney Disease) 2007 taking 7.5mg lisinopril
- Anemic - Ferolicit IV bi-weekly
- Ashermans Syndrome - no treatment
- Allergies - water - haven't been tested officially but pine suspected

Posted 6/26/2008 4:29 PM (GMT -6)
Hi All,

Judilyn - I asked that question. They want to remove the kidney asap because of the cancer possibility. Obviously, the longer we wait the more risk of the tumor growing. The steroids can also contribute to the growth of the tumor. In addition, it can also compromise my recovery and put me at a higher risk for infections. The likelihood of this happening if I take the steroids is quite high, so the urologist would want to allow enough time to make sure that the steroids are well out of my system before proceeding which just adds more time to the potential cancer that is potentially growing as we speak. Right now the tumor is approximately 2.5 cm and according to statistics (which I have no patience for) will double in size within a year. The whole "cancer" thing is quite scary and as you can imagine, I want the kidney out as soon as I can.

As far as a second opinion, I had the CT scan, sonogram and an MRI. I saw it with my own eyes. It is definately a solid mass. At first they thought it might be a fluid-filled cyst, but it definately isn't. According to an old friend, who is also a urologist, this type of thing is almost always malignant and because you can't biopsy it, the removal of the kidney is really the only option. So, in summary, my PCP noticed it, my urologist confirmed it and more importantly, I saw it for myself.

Judilyn, one thing about me is that I DO NOT think doctors are Gods - quite the opposite. They offer their expertise, but when push comes to shove, it's my call and I have absolutely no problem making whatever call is necessary. They may be concerned about their patient, but I'm concerned about my life. There is too much information out there that is readily available that there is absolutely no excuse to not be informed about any condition. I'm a doctor's worst nightmare!!! LOL I challenge them on every single thing, even the flu!! LOL

Thanks again!!!

Lisa E.

PS - just bought Acidopholous Pearls (sp) and Fish Oils. Going back to see if I can find the Culterelle.
Posted 6/27/2008 8:18 AM (GMT -6)
Lisa,

I think you are doing the right thing in regard to the prednisone, since you are getting formed bm's and not much blood then the asacol is helping. When I was first dx'd all it took for me to go into remission was sulfasalazine and rowasa enema's and I was losing a lot of blood (toilet bowls full). I'd recommend getting another GI who doesn't push the pred so hard, but it soundsl like you already have a great handle on things. We have to be our own advocates!

The prognosis for your kidney sounds good, not that you have to lose it but that you can keep your other one and hopefully like your Doc says not have to worry.

Take Care!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

Posted 6/27/2008 11:30 AM (GMT -6)
If you're improving without the pred, I would avoid it. Has your doctor talked about rectal meds at all? Rowasa? Canasa? The additional dose of meds might help...
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
20mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 6/27/2008 4:08 PM (GMT -6)
Hi Guys,

Knowledge is power and I'm educating myself - or at least trying to. There's so much conflicting information out there that it makes your head spin.

I started taking the Culturelle and I swallowed a fish oil pill that was about as big as my friggin thumb!! LOL I'm looking into everything I can (if you know what I mean).

My GI did discuss the possibility of enemas but he said that the UC is throughout the entire colon and the enema would only reach a small portion. At the time, I had absolutely no information on my condition, so there was no reason for me to question him. After reading a bit, it seems like the enema and the Asacol would meet somewhere in the middle and hit the problem from both ends. I will definately discuss this with him at my next appointment which is next week.

So far I've only gone twice today. Both were formed with very little blood. I seem to be tolerating the culturelle pretty well as far as gas and bloating goes. I'm very tired, but other than that I pretty much feel like myself. No pains or gas and no urge to go since about 12 noon. I'm praying that this is the start of remission. My life is literally hanging by a thread.

Thank you all again so much for your support and concerns. It means so much. The doctors offer solutions, but they only know the medical end of things. We, as patients, know what this disease is and how it affects us every day. Even though I was only diagnosed on Monday, it doesn't take long to figure out that this is a life-changing condition that really sucks. The doctors go home to nice meals and wine. I go home to a nice big bowl of rice, broiled chicken and water. Sounds kind of jailish to me!!! LOL

Lisa E.

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