Searching for the Right Doctor....

Old Hat - I had my colon chopped out after 12 months with UC...I was already considering it 3 months into my UC because of the pain and amount of medicines I was on. My initial "flare" never went into remission after trying Asacol and Prednisone for a solid year (had no less than 12+ BM a day/night while on 20+ pills a day). I was dependent on the prednisone, anytime I went below 10 mg/day and eventually 15 mg/day the symptoms just got worse. I began that test 9 months into it since I wasn't getting any guidance from my local GI specialist...and learned on my own that I had steroid dependent UC. I didn't want to go the Remicade or Imuran route because of the cancer --> instant death "side effect" or the potential to affect my offspring. I went to the Cleveland Clinic 9 months into it and they said it was time for the colon to come out as well. I just told them I wanted surgery and they said okay after a few tests. That's how easy it was for me.

I also asked all my doctors to give me the blood test results and I tracked them in Excel...I'm such a nerd!!! As the months went on, my blood work continuously got worse...and more and more items kept falling "out of the normal range," so I felt and had the medical facts that things were only going down hill for me. Prednisone will wreck your body the longer your on it. Luckily osteoporosis was the only permanent condition I got from it. Almost all of my blood work numbers 2 months after stopping it have returned to normal...to where they were when I was first diagnosed.

Prednisone long term will cause your arteries to harden, cholesterol to rise (mine went from 130 to 160 in 3 months and was heading to 200...I just had it checked today and now I'm at 100...75 to 100 is normal for me). You also could get steroid induced diabetes because it makes your pancreas work 3 - 4 times harder to control sugar levels in the blood (my sugar levels were going up...hitting 130 to 140), could give you osteoporosis because it leaches calcium out of your blood and bones (I got this due to my GI doctor's negligence), it turns your internal organ walls into the consistency of butter, your adrenal glands can go dormant for life, leading you to be dependent on prednisone forever. I did the surgery to mainly get off the pills and keep the rest of my body/organs healthy...like my liver, kidneys, immune system and bones. Now, I'm focused on improving my bone density...to try to reverse my osteoporosis somewhat with vitamin D, Milk/calcium, and Actonel while I'm still young.

UC Spouse - Surgery was painful, but a month or two of pain is worth all of my future years being pain and UC free. I was in constant pain for a year with UC. Now I'm pain free and back to normal again...so to me it was well worth it. My energy levels and mental abilities suffered tremendously when I had UC. It took me 3 to 4 times longer to do things that I could easily do before. Plus the constant mad dashes to the bathroom all the time was terrible and very limiting on what I could do in life. Now, I have my mind back and freedom from the restroom again. Count how many times you go to the bathroom a day to pee...I'm guessing it's probably around 3 to 4 times...so 5-7 times with the colon out isn't really that much more.

Colonoscopy with biopsy is usually pretty good for determining UC. The Cleveland Clinic (#2 hospital for GI issues in the nation) also did the pill camera that you swallow and it takes pictures every so many seconds and sends them wirelessly to a computer you wear around your waist...they've been doing this since 2001. You then send this computer back to the hospital via UPS or DHL (it's the size of a small book with 8 wires coming out of it). It takes pictures of your entire esophagus, stomach, small intestines and colon. They can then see if these all look normal...which they did, except for the colon for me...so it's a pretty good test to rule out Crohn's. By the way, you just flush the pill down the toilet when it passes through about 8 hours later.

GISGuy31, I saw were you went to the Cleveland CLinic, May I ask who your dr was. We live about 4 hours away and I made an appointment for my husband there once, but he made me cancel becuase he was feeling better, (on prednisone). He is in a major flare at the moment and I want to take him there, his GI is just a general GI. I would like to have a specialist. He was diagnosed in January of 2007, has never been in remission. Prednisone has helped him, but when he goes off, bad flare. Lialda almost killed him in July along with an antibiotic. Demratologist said he had sweets disease.? any way his hands and feet lost all there top layer of skin, they were raw for about a month. He is a fabricator (welder) by trade and works for himsself. It was tough. The dr wanted him to come into the hospital, he refused. I didnt go to work for 4 days so I could sit by him while he slept to make sure he was breathing. I have suggested the surgery, but he refuses. He says he will not have a colosomy bag. He will just die instead. He makes me so furios sometimes.

I am glad this question was asked. It has helped me alot. I am afaid he will be one who needs the surgery. NO medications have helped. We were told at the last appt. that if the 6mp fails its onto remicade. I am worried about this drug. My husband is 41

Thanks guys for such a wonderful site and being open about the disease. He will not talk about any of it much to me.

He is the one that we had the origianl appointment with. I am going to make the appointment and make him go I think. Thanks alot

Waterdog,

Dr. Bo Shen is my GI specialist at the Cleveland Clinic and Dr. Feza Remzi is my surgeon. Both are ranked tops in their field. I researched them tremendously on different forums before picking them. Dr. Shen specializes in pouchitis along with GI issues...since I knew I was having surgery, I figured he would be the best choice for me. They all praised Dr. Remzi as a surgeon...and I agree with them...he is very very good too and very funny. They are both very down to earth and listen to you and tell you exactly what you need to know at each stage. I'm only an hour away from the CC, I live between Akron-Canton. I should have gone there first when my UC started instead of gamboling with a local GI specialist here.

The bag thing isn't bad at all. It just takes a few weeks to get use to the new "normal" routine. Once you find the right system its pretty easy...plus you feel so much better. I'm now back to normal. That's what helped me to get use to it. Plus it's temporary for me now...and if my j-pouch fails in the future...this would be the worst case scenario...which isn't bad at all. Yeah, I believe the surgery option should not be the choice of last resort for this disease. Too bad too many people fear it and doctors are taught to use it as a last resort. I think some of the meds should be used as the "last resort" since they can cause many more possibly permanent problems than UC does.

I've never heard of sweets disease.

waterdog-Good Luck! I just wanted to give you a big hug. From one UC spouse to another. It can be extremely difficult to talk about the disease, b/c I think they suffer enough that they just don't want to talk about it anymore. Then, it's like the disease defines who they are. Anyways, Good luck with the doctor. I wish we lived closer to Ohio. I have read great things about the Ohio Clinic.

On a second note, this is absolutely a wonderful site! I received a cushion of comfort and help here, when I felt like I could not even discuss things with my husband. Like you, I wish there was something we could do to help them. Sometimes that feeling of helplessness can be rough...but, the people here are so wonderful! As you can see on this thread itself...they have all been so wonderful and supportive!

p.s. We go to the specialist tomorrow...I hope he gives us some hope or moves us in the right direction. Fingers crossed!

Wow waterdog...sorry to hear. Yeah, it's rough seeing someone go through it. My parents took my UC harder than I did I think...which was strange to me since I was the one with the disease. I had a hard time understanding their reasoning or feelings. All I can say is let time play things out. Either he'll find the right meds, or he may choose surgery eventually...or it may be forced upon him if his condition gets too bad. Either way, things will be better in the end...you'll just have to whether the storm(s) first. You'll probably have to be patient and let things play out...which I know will be very difficult to do.

Good luck

I know I"m late, but I just wanted to thank you all on this thread. You all helped me very much and I really appreciate it! We met with the UC specialist...well, let's just say we're more confused than ever. I am going to start a new post regarding this, but I just wanted to thank you guys so much for your support! :)

Waterdog, I hope your husband is feeling better and is coming around to talking about his options. Waterdog, I couldn't agree with you more about the feeling helpless part. And, I thought I was the only one out there that feels this way. Take care and good luck with everything.