surgery

     

     Hi everyone,  I have only written a couple of times here but read it everyday.  You don't know how much this site has helped me.  A little over a year ago, my 15 year old daughter was diagnosed with uc.  We just came home from the hospital after our 6th stay in little over a year.  My daughter was on remicade. It doesn't seem to be helping her.  She doesn't want to try humira, she is tired of being sick all the time.  She decided today she wants to have the surgery.  Part of me wants her to have it, and part of me don't.  I know deep down this is the best thing for her.  For the last year she hasn't had a life.  She hardly leaves the house.  After her surgery will she be going to the bathroom a lot or will it be like normal?  Really can't remember what normal is anymore for her.  Any adivce on the surgery or things I should ask or need to know I would really appreciate it. 

notsosicklygirl

Thanks for responding, that is not what I want to hear that she will go to the bathroom more. I would hope she would go less. How much more could she go. Yes she tried 6mp got pancreatis (sp) with that so can't take that.
As for prednisone, of course that worked, but the side effects from that, you name she got it. I would never put her on that again. My daughter has really never been in remission. The medicines had helped a little but never really put her in remission.

the first thing ya'll need to do is meet with a surgeon (or several) to learn more about your daughter's specific surgical needs. my son had surgery in november. because he was so young and otherwise healthy he had a pull through operation which is where they remove the colon and attach the small intestine directly to the anus all in one procedure. i assume that since your daughter is much older than my son she will likely get a temporary ostomy and then later a j-pouch. of course i'm no doctor. my son now has quite a few more BM's than he did even while flaring. he no longer has any urgency, pain and blood. AND he's off all those crazy medications. he also can eat most anything and has much less anxiety and fatigue. he's also grown considerably now that he is healthy again.

i understand where you're at. it's scary to see your child suffering so much. we tried several different types of medications and lifestyle modifications. they all either worked a little for a little while, not at all or just made things worse. when we finally came to the point of deciding between biologics and surgery, my hair was falling out, and i couldn't sleep or eat. i'm sure some of the other parents will chime in too. my son tells me all the time he's glad he had surgery.

Worried mom, I am sorry you and your family is going through this. I just can't imagine.

Can you tell us where you live? There are many good surgeons out there and many who just don't have the expertise and experience. Do your research and find the best surgeon in your area. We had to drive 5 hours to the Cleveland clinic but it was so worth it. It seems the people who have the most problems are the ones who didn't go to the best surgeons. Also, best to talk to a surgeon now so she doesn't have to have emergency surgery...that might take away some choices as far as a surgeon.

The surgery wasn't easy, but easier than I thought. Getting used to the bag has been a challenge for me, but I have finally figured it out and it's temporary.

Lastly, it seems like it is just a matter of time before she has exhausted all her options. I can see where she just wants to get it over with so she can start living life again. I'm 44 and that is where I was at. I don't regret the surgery yet and can't wait for my reversal. Yes, I will go around 6 times a day, but there isn't the urgency and I have been told you just go when you pee.

Good luck to you all.

chris's colon,
We have already talked with the surgeon. They will do the j-pouch. My friends want me to get another opionion before she has surgery. They just don't understand she is on the strongest medicine that going somewhere else isn't going to make her colon respond to anything.

Disneynut66,
We live in Ohio. We have already talked with the surgeon, this will be our third time. We go to Pittsburgh Children's Hospital. I am stuck between going through with the surgery or trying the humira. Her dr. said that their is a 5 to 10 percent chance it would work. She doesn't want to take the chance of it not working taking months to find out it doesn't work. She wants to be better before summer so she can have fun. She did nothing last summer but stay in the house. From reading on here it seems everyone who has had the surgery doesn't regret it and wish they would have done it sooner. She is just 15 and I don't want her to have the surgery and regret it afterwords. Thank you taking the time and listening

Isn't Cleveland Clinic supposed to be the best for GI surgery?

Worried mom, I would also recommend surgery. I had my reversal almost seven weeks ago and am doing well. It was a long process for me because I had the surgery in three steps but a lot of people have it in two. I can tell you the result is sooooo much better than living with UC. Even living for eight months with the bag was so much of an improvement over the life I had before - which really wasn't much of a life. Chances are, if the Humira works it won't work forever. Remicade worked for me for about two years and then one day it didn't work at all. No one really knows the long-term affects of the biologics. I, like most others, wished I had the surgery a long time ago. I wasted a lot of life. I go about 8 times during the day now but that number may come down as my pouch matures. Sometimes I wake up once to go during the night and other times I'll sleep straight through. Like others have said, it's very quick and there's no urgency, which is the best part. I also had mine done at the Cleveland Clinic. It's four hours away from my house but people come from all over the world to have the surgery done there. I totally understand your daughter's desire to have surgery - life is too short to live it in the bathroom!

Worried mom.... a little over a year ago I sat exactly where you are. My 17 year old son was going through his third major flare and remicade had stopped working for him. At the start he would not even mention surgery but by this time HE was so ready for it. I think it is so important to really talk with your daughter and to listen to what she has to say. She is old enough to know if her world is out of her control due to this illness and that she is ready for surgery.

I agree with everyone that the most important thing is that you find the VERY best colorectal surgeon that you have access to and to travel if needed. This is very major surgery with a lot of judgement calls that need to be made along the way. You want someone who has done zillions of these operations.

Your daughter and your family need to be aware that these surgeries are not a walk in the park but, in the end, it is so worth it. Going into surgery my son had a Hb of 62, a resting heart rate of 120, and many many problems do these issues and side effects of the meds. He had his surgery in three steps over 6 months. He is now a new person. He is healthy in every way, has more energy than he knows what to do with and is off at university having the time of his life.

You asked about BMs after surgery. When the pouch is first used it is small and therefore does not hold much. The first few weeks she will be in the bathroom A LOT. There is a lot of improvement over the first few months while the pouch stretches and learns to adapt to its new function. about a year post surgery things are about as good as they are going to get. This is the point that my son is now at. He has about 5-6 BM a day and is usually up about once during the night. HOWEVER, these BMs are NOTHING like UC days. It is quick and easy with no urgency and no pain. I hear that for girls it is even easier.....probably when she pees she will have a BM...and it is as easy as that. It is very important not to get hung up on the number of BMs. Do you know how many times you pee during the day?? The BM during the night is so quick and easy that most mornings my son does not even remember if he got up or not. When he is asked he says that the number of BMs does not bother him at all.

Do your research and then make another appointment with the surgeon for the both of you and make sure you get all your questions answered. It is very important to go into this knowing exactly what to expect. I know for girls one concern is increased risk of infertility. These are things you have to weigh. For us...getting off those drugs was the most important thing. I could not accept that he would on them for decades and then probably need surgery anyway.

For us, surgery has been a blessing and there is not a day that goes by that I do not say a silent thank you to our surgeon.

collicat,
Thank you so much for writing to me. It has helped me alot. Their were other options to try first, her doctor had suggested a bowel rest. But didn't want to put her through it for two months and she ends up needing the surgery anyways. I know deep down this is the best thing for her. As a mom, I would want to try anything before I put her through major surgery. I think I am pretty happy with who is going to do her surgery. Her doctor had suggested him. He is a pediatric surgeon at childrens. I went with a regular gi doctor for over three months and she ended up at childrens for two weeks in the hospital with her blood work looking terrible. I think after over a year with her gi doctor she has now, I trust her to do what is best for my daughter. Is their anything you can think of that maybe I should ask. They will be doing her surgery in two steps. The first surgery would take 3-5 hours. Hospital stay only 5 days. He said they get her up walking the very next day. She wants me to call Monday and schedule her apt. She is due for her remicade on Friday. Her doctor doesn't want her to have it, she said she wouldn't put that in her body again since she is having the surgery anyway. She told me not to worry she would admit her if needed be. Thank you so much again for everything you do for people like us who don't know what to do.

We went through the exact same thing with remicade. Dillon was due for his and they did not give it to him. He was also on 10mg of prednisone going into surgery. He ended up being hospitalized for a few days before surgery, which actually made everything so much easier. He had been so worried about how he could possibly handle the one hour trip to the hospital the morning of the operation if it was rush hour....things you and I don't think about but this was terrifying him. Being in the hospital they could make him comfortable, keep him hydrated and they actually gave him a transfusion the day before surgery. It also helped him to have a rapor with the nurses before heading off to surgery.

I am glad you are happy with your surgeon and it sounds like you are in good hands.

As hard as it is to have the conversation, I would make sure that your daughter understands all the possible complications. The surgeon will discuss them all and it can be scary, but make sure that she understands that most of them are easily dealt with and may just mean a little longer stay in the hospital. I assume that your doctor has discussed pouchitis with you. We were told that 30-40% of J pouchers will have it at some point during their life but that it can usually be dealt with easily with a couple of weeks of antibiotics. On these sites you will read the stories of people with constant pouchitis but this is actually very rare. Bowel obstructions are also a possibility. Again, the numbers we were given were that 30% of people, having any sort of bowel surgery, will have a bowel obstruction within 10 years and 30% of those people will have it occur with the first month post surgery while the intestine is still swollen. Dillon did have his fair share of bowel obstructions but they all happened shortly after surgery and he has no issues for the last year. Almost all bowel obstructions resolve on their own with bowel rest and walking, massaging etc.

Your daughter should also be fully aware of the implications of possible decrease in fertility. I don’t know too much about that since it more a female issue. …..at least you do not have to worry about erectile disfunction. ( that was a little attempt at humor)

I really don’t mean to scare you with these things and everyone here knows that I am a big advocate for surgery. However, I do believe that it should be entered fully educated so that there are no surprises. As we were anticipating surgery the statistic that kept us going is that one year post surgery 95% of people are very happy that they had the surgery. I think that speaks volumes. And just about everyone here will tell you that their only regret is that they did not do it sooner. You also have to remember that stats like 30% will have a bowel obstruction actually means that 70% WILL NOT.

I have to tell you that the most magical time for me was the first week after Dillon’s colectomy. Even though he was going through the early days of post surgery and he was dealing with his ileostomy you could literally see the life returning to him. Every day that passed he just got healthier and healthier and happier and happier. The happy-go-lucky kid that we had lost to this disease was smiling back at us. It is only afterward that you really realize the severity of the effects that that diseased organ was having on the whole body.

I wish you all the best and if you have any other questions I am always happy to discuss any part of our journey. If you want I can also give you my email address, but I do think it helps others to be able to follow our conversations. I cannot promise , but I could also see if Dillon would be open to taking with your daughter if you thought that would help.

disneynut 66

Didn't mean to ignore you, No I didn't ask how many surgeries he has done. That is why I wanted to know what kinds of questions to ask. I do know I think he told me that the nurses that would take care of her have gone through this. Is their anywhere on the internet I could go and find out more about him. It isn't set in stone yet that I have to go their. My daughter is just so tired of being sick she just wants this over with. I know that is where I need to be the parent and do whatever I can to make sure these doctors are the best. Thank you for your input

 I am in between two surgeries,soon i will have the takedown.I had UC flares only two times,but it was such a disaster that they decided that i shall go for a surgery. And I did not regret it at all....even life now,with an ileostomy bag is MUCH,MUCH better than UC days.And most probably,after takedown things are improving more....

My surgeron did 120 j pouchs.Is it a small number?