New Here - BIG Question!!

Hi All,

I just got diagnosed on Monday with UC of the entire colon.  I'm not too familiar with the terminology yet, so please cut me a bit of slack!! LOL

They prescribed me Asacol and Prednizone.  I'm taking the Asacol - 2 pills, 3x a day and I haven't started taking the Prednizone because I'm scared of all I've heard.

This is my BIG problem.  You see, I hit the lottery.  When I went for a CT scan, they found a little something on my kidney.  Since 90% of "little somethings" on the kidney are usually malignant, I have to have my kidney removed.  Problem is that there isn't a surgeon who will touch me until this crap calms down.  As you can imagine, I'm EXTREMELY frustrated.

I spoke with my urologist yesterday and told him about my diagnosis.  It's taken over three weeks to finally find out that my problem was UC.  When I told him about the Prednizone, he sounded extremely concerned because of the effects this could have on my kidney surgery.  He was going to get in touch with my GI to see if the Prednizone was absolutely necessary.

Does anyone know what problems are associated with surgery and Prednizone or surgery and inflamed UC?  I'm still waiting for my urologist to call me back about whether or not to take the Prednizone, but you all know how long doctors take in getting back to you!! LOL 

I'm soooo scared of this kidney thing and the clock is ticking.  I just don't know where to turn.  Any information would be greatly appreciated. 

Thank you,

Lisa E.

In layman's terms, Pred is an immunosuppressant in most cases. Thus, being on Pred while exposed to all of the bacteria associated with surgery increases your risk for infections, slow healing, etc. Pred is *intended* to fight inflammation, so it also fights your body's natural healing process.

These are the side effects of Pred as I understood them from my doc, but it's not the entire list.

LOL, never apologize for being graphic here, it's necessary for what we discuss. We just keep it clean but say what we need to.

Less blood is definitely good. Less liquidy is good. Sounds like the Asacol is taking effect quickly for you. It definitely seems your kidney should have top billing now. UC won't kill us, but sometimes it surely can make us feel like we wish it would!

On important thing is to get yourself on a good probiotic. UC (and antibiotics given with surgery) deplete the healthful bacteria in your colon. This can create a welcoming environment for bad bacteria and cause infections or worse flaring. Almost all of us take an oral probiotic every day. One that helps a lot of us is Culturelle, and you should be able to get it at your local pharmacy. I take Primadophilus Reuteri, but I have to order it on the internet because it isn't available in my local area. You probably will have other choices at your local health store.

Also check the resources at the top of the forum, there are links to some really good information there. And as an aside, we're advised not to take Motrin, Alleve or other NSAIDS as they can cause intestinal bleeding. Use Tylenol instead.

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

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.

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.

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!

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.