surgery

Hello, I am 18 years old and was diagnosed with Ulcerative Colitis nearly a year and a half ago. I have been on prednisone every day of my life since then. My doctor has tried several times to taper me off of the drug, but it never works, and I always end up back in the hospital. I started with Asacol, but had an allergic reaction to it, and it caused more diarrhea and bleeding than I've ever had. I stopped the asacol and went straight for the 6mp. This was all coupled with the prednisone. I felt like I was in remission for about 5 months, but the 6mp lowered my immune system so much that it locked me back up in the hospital with mono for two weeks in isolation. To date, I have been in the hospital 4 times. My doctor decided to take me off of the 6mp for precautionary reasons, although it seemed like the drug was working fine. He kept me on just the prednisone, tapering and increasing, tapering and then increasing for a while. Then I started Remicade. I have had 5 infusions, but it doesn't seem to help. I tolerate the infusions just fine, but to me they don't seem to be working. My doctor says from the scopes he has done that it seems to be helping to heal the lining of my intestines. So, although it might not seem to be working on the outside, I guess it is doing some good on the inside. I know I have only had this disease for about 2 years, but it has totally changed my life. I am only 18 and have lost 35 pounds, and I go around constantly worrying that I won't be able to get to a bathroom in time. I recently came out of the hospital after a really severe flare, and am doing wonderful at 25 mg of prednisone and a recent remicade infusion. My doctor is trying to see which dosage I can maintain at and still live a fairly normal life and continue to go to school. I feel like all my options have been exhausted. I have tried so many things, and nothing seems to work. I would go back on the 6mp, but I don't want to risk losing my hair again and being back in the hospital with such a supressed immune system. So, I have decided to have surgery. I am nervous, very nervous to say the least, but I know that my body can't stay on prednisone forever. It has already done significant damage, and I can't risk the health of my body anymore. I know there are a lot of years ahead of me, but I feel that surgery is the best option for me currently. I am heading off the college in the fall, and I can't be worrying about constantly trying to find a bathroom all the time. Somehow I don't think that would fit in with my busy college life. It would certainly make getting to class and graduating more difficult. Please, if anyone has any pointers, knowledge, personal experience with surgery, or anything relating to surgery I would really deeply appreciate it! I could really use some answers.

Heather....welcome to the forum!

I would make the very same decision and get on with my life.

q

If I were in your shoes, I wouldn't hesitate to get a colectomy. It sounds like your UC is the sort that just can't be controlled with medicine, so I say get rid of it and get on with your life!

i think you are doing the right thing!
i got UC when i was 21, and i wasted 8 years of my life on that stupid disease/colon, and did tons of damage to my body with meds! And i should have just had the surgery as soon as i saw blood!
I know its scary, and i wont tell you to not be scared.
What i will tell you is that it will be soooo great to be healthy and not have to worry about the bathroom! Or what the meds are doing to your body. Or losing your hair, that was horrible, that happened to me 3 or 4 times, and it just broke my heart everytime.
Good luck!

Just a question. With the J-pouch, how many times a day do you go to the bathroom? I just had a second opinion for surgery, and the surgeon basically told me that he wouldn't do surgery on me because I was so young, and that it would cause me to be going to the bathroom up to 20 times a day. He said that is could handicap me. This was news to me!

Set me straight on the details of a J-pouch

from what the surgeon told me the ideal # of bathroom trips after surgery is somewhere between 5-8, he said some people are more some are less. He told me in the first year it would probably be in the 8-10 range and as I adjusted the frequency would decrease. I'm looking at making a decision about surgey myself by the end of the summer. J-pouch.org has alot of topics related to your questions about surgery.

Oh my....I am right there with Suebear....please see another surgeon.

My son, who is also 18, has also battled UC for the past few years. For him every flare was worse than the one before and the drugs were not working any longer. His life was no longer under his control and his whole body was very sick. Last September he had his colon removed. Within days you could see the health returning to him. Within a month he had more energy than he could remember. In January he had his J pouch built and had his take down the end of February. He is doing GREAT. He has 4-6 BM a day, no urgency, no pain, can eat anything, is feeling wonderful and is now living life as a teenager should.

This surgery is major and does have a fairly high complication rate, but most can be dealt with easily and may just mean a longer hospital stay. It is imperative that you get the best colorectal surgeon that you have access to. There are a lot of judgement calls that need to be made along the way and for someone who does this everyday it is not a big deal but do not let a general surgeon near you.

Just to let you know, my son had more than his fair-share of complications but would do the whole thing over in a heartbeat. Our only regret is that we did not do it sooner.

If you have any questions we are happy to discuss our journey.

Cathy (and Dillon)

There are GREAT surgeons in LA. I had my surgery there as there were no qualified CR surgeons in my small town 2 hours north. Cedars Sinai is great as is UCLA and my surgeon, Dr. Robert Beart, formerly of USC and now at Glendale Memorial. Dr. Beart is probably the most experienced CR surgeon for jpouches having done over 2000 of them but the other surgeons are great too.

Sue

fruitgirl said...
If I were in your shoes, I wouldn't hesitate to get a colectomy. It sounds like your UC is the sort that just can't be controlled with medicine, so I say get rid of it and get on with your life!

My thoughts exactly! Get it out and get on with your life, be able to finally relax.

You don't want to still be struggling 25 years from now, like I did.

Im doing alright. The doctor is trying to see which dosage of prednisone I can handle, and still maintain on. He's trying to get me down the lowest I can maintain on, is what I mean. I started 20 mg about 2 days ago, and today has not been good. So, I bumped my dosage up to 30. Tomorrow is my grad night at Disneyland, and I would be extremely disappointed if I didn't go. I missed my prom because I was in the hospital, and I will be sad if I can't go. Otherwise, I am doing well. Thank you for the concern.

I would definitely be looking into surgery too. It sounds like you have been through a lot in a short period of time and it doesn't seem like conventional treatments are helping you enough. I was thinking about trying some of the more unconventional therpies but I haven't made a move yet. I am in south california too but I am not a teen. I used to have some doctors at Cedars but I haven't been seeing doctors there lately. I don't know where I would look if i had to have surgery, such a huge decision but it sounds like we have some great options here and for that, we are lucky. Sorry you're feeling so bad. I hope you see some improvements soon!

I had surgery in LA. You can email me if you like. This is from 2010 and I don't think you will be able to get in touch with Heather, but we do have another parent, who isn't active lately but would likely respond to an email. Her daughter had surgery around 15 I think. I think they were in Southern CA too if I remember correctly.

www.healingwell.com/community/profile.aspx?f=38&m=2138134&p=75159

Not a tough choice for me.Have had UC for 32 years.I have this disease it doesn't have me.Its getting to a point where its progressing slowly worse and instead of heavy duty meds i want this diseased body part gone.I want quality in my lifr and its time to remove the monster