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surgery? mom of 17 year old

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Posted 5/9/2009 3:07 AM (GMT 0)
Hi everyone,

I am new to this forum but have to admit that I have been "lurking" for some time. My 17 year old son was diagnosed with ulcerative proctitis 1.5 years ago, but since then things have become much worse and his last colonoscopy, last fall when he was hospitalized for 10 days, showed that this had progressed to his whole colon. He tried all the 5-ASA type meds and then we progressed to oral prednisone and enemas. These helped a lot with the first flair, but have since become less and less helpful. He has had 5 rounds of remicade but ran into trouble the first time that he had to last 8 weeks. The next round he was tested to see how much of drug was still in his blood stream at 4 weeks post infusion and there was NO detectable drug. The doctors are therefore trying 10mg/kg of drug for the next infusion ( at 4 weeks) and at the same time he is back on pred to try to get the colon happier before the next remicade infusion and then we will "see" if the 10mg/kg works and how long it lasts. At the same time we are being set up to meet a surgeon. We are very lucky that we live in Toronto, Canada and have access to some of the best doctors and surgeons that there are.

I am trying to prepare my son for the fact that surgery could be in the future, but this is so hard for a 17 year old and he so wants the remicade to work. A part of me does as well but there is also a part that does not want these drugs to work and thus mediate a quicker decision toward surgery. The thought of these drugs, for however many years, scares the hell out of me and from what I have read, surgery, for the most part, is very successful...especially for young people. (even though we know that will not be a walk in the park)

I guess I am just looking for some support and some ideas as to what you all think. Bennie, I have followed your story with Bratcat and you both give us so much hope. Your story seems to be so similar to ours! My greatest hope is that I can be excited about my son's next birthday and telling everyone "What a difference a year makes!"....I am so happy that things have worked out well for your daughter.

Thanks to anyone who wants to share their thoughts and insights.
Posted 5/9/2009 3:27 AM (GMT 0)

Geez, Louise. 17 years old. I am so sorry. My first route to take before surgery would be to experiment by changing my diet. I experimented with an antifungal diet (against the wishes of my doctors) and got well again. As well, natural antifungal supplements and probiotics were necessary to help me get there. I'm sure his doctors have not recommended such a change, or may even have told you that diet will not have an effect on his symptoms. Sometimes you have to take our your health in your own hands and try something that goes against conventional medicine. I'm NOT saying a diet change (i.e. SCD or antifungal diet) is a guarantee (sometimes, for instance, the disease has progressed too far, or is not fungus/yeast related), but for me, I would be willing to try it, knowing many others have had their symptoms go away as a result. (Has he ever been on antibiotics in his life? - or been exposed to mold/mildew?)

It is not a quick fix, and it requires much sacrifice to restrict the foods that have become so much a part of your life, but the only way to know for sure is to give it a try. If you want more info on the diet and science behind the fungus link to disease, you can read more at www.knowthecause.com under the FAQ link. Fungus has been implicated in colitis and Crohn's disease. Don't rely just on your doctors knowledge, but continue doing your own research to make informed decisions.

I wish you and your son the best.

Posted 5/9/2009 3:56 AM (GMT 0)
Hi there!
First off welcome to healingwell!
Second, I am really sorry to hear about your son. I was diagnosed at 16 and I remember how hard it was and it kills me to see other kids go through that, it truly does.
Now he has tried 5-ASAs and pred? Has his GI mentioned 6-mp/Imuran? There are other meds out there, so maybe you aren't at the end of the road yet. It takes a while to find the right 'cocktail' of meds. I fought like crazy for a year and a half to figure out something that would work for me because I didn't want surgery to be the only choice for me, not at 16. I wasn't ready to let it defeat me. Sometimes surgery is best though. If his quality of life is severely impacted by the disease then surgery may be the best choice.
I guess I don't really have a lot of advice for you but I wanted you to know I've been there and you are so not alone. There are so many great people on this website that can offer a wealth of insight, ideas and support.
I hope he starts to improve soon. He deserves it and you do too!
Posted 5/9/2009 4:21 AM (GMT 0)
Hi Callalilly 22,

Thanks for the kind thoughts. Our doctors feel that Imuran is not a viable option for us. Without Remicade, my son seems to fall back into a flare within a few weeks of ending prednisone. None of us feel comfortable with the imuran/remicade combination due to the concern of lymphoma (even though we know it is has a very low incidence) and the lag of numerous months for the imuran, by itself, to possibly kick in is too long for us to wait. None of us want to see him on prednisone for that long.

I am so happy that things have worked out well for you and that you have had a three year remission...I hope that it lasts a lot longer for you.
Posted 5/9/2009 4:27 AM (GMT 0)
Totally understandable about the 6-mp/Remi combo. That's some scary stuff for sure. And pred is just as bad...
Posted 5/9/2009 3:20 PM (GMT 0)

Collicat, you are right, our children's stories are very similar! And it stinks!
You may want to think about changing his diet as kim123 said. We never really tried that completely with Bratcat. Being on a very strict food plan was something that she balked at (more than surgery, go figure).

I would suggest that you at least consult with a surgeon (or two or three). Get as much information from them as you can (their experience, what the surgery would be like, pros, cons, recovery, complications, etc.) and find one that you are comfortable with. This way, if you decide that surgery is the way to go you don't have to first do all the footwork. In Bratcat's case, we met with a few surgeons in mid/late May and surgery was scheduled for a month after. Less waiting for her was the best emotionally. Even back in the fall during her 2nd flare we had planned to look into surgeons in the spring when she was in remission. Unfortunately she had another flare in the spring so it just made the push to find a surgeon a bit more urgent.

I think it is also important that your son be a big part of the decision. All kids are different. When Bratcat was first diagnosed we said she wouldn't even go on 6-mp and surgery was a horrible word! With each flare, she (and we) realized that asacol, enemas, and prednisone weren't going to cut it.

It is very scary thinking about surgery for yourself or for your child. It is a slow recovery process but I can't believe that it has been almost a year since Bratcat's surgery. I'm sure you've read all the pros and cons I gave about why this was the right decision for her. I would suggest, if your son decides on surgery and you can arrange it (as opposed to it being an emergency) to plan it around a long vacation from school (we did it at the beginning of summer). This allowed Bratcat to recover slowly without the pressure of having to be back to "normal" by a certain date.

Good luck. If you need to "talk" more, you can click on my email address (I think it should work). I hope your son feels better soon.

Posted 5/9/2009 3:39 PM (GMT 0)

Hi

I am the mother of a 24 yr old son who got run over by the UC train ten months ago. We have watched him suffer, get depressed, miss work and basically be sick all the time. We treid every drug out there - even a short course of cyclosporin at Mt Sinai this week. We have looked for at least some evidence of benefits from any of these drugs and finally concluded that a life on these meds coupled with feeling miserable, is a sad looking future. Yesterday he had the surgery and I think it was the first night in a year that we have had any peace. He called this morning looking for us to visit and when I asked him how he was, his answer was" actually, not that bad." Wow- it has been a long time since we have heard that.

We now have hope that he will live a normal life - the surgery is a gradual process, but what's that in the course of a lifetime?  I have done endless research and as a family we concluded that the upside definitely outweighs the downside. At least in our case and really I think in many - there are so many unhappy people out there suffering with this disease.

Now of course my son's health was deteriorating rapidly - he was getting sicker and sicker - the steroids were messing him up and the immunos were not working - we did not have a lot of options. But when the surgeon came out of the OR, he looked at us and said, - we did the right thing - his colon was very diseased.

As a mother I feel you pain so well - please feel free to contact me if you would like to get updates on how he is doing. I will tell you that today for the first time in so long, we feel hopeful and tremendous relief.

My very best to you

Maria, mother of Anthony, day one after surgery

Posted 5/9/2009 5:00 PM (GMT 0)
Hello =) Im 17 too =D I was diagnosed with pancolitis March 18,08 and I tried what seemed like EVERYTHING..I was prednisone dependent (just got off completely in December) I was on 20mg of pred forever..everytime Id try to taper off Id flare SO bad! I was also taking a Methotrexate shot every weekend bc it made me sick for 3 days after I got it..poor mom. She was the one who gave it to me and she would cry everytime she had to give me the shot. I was taking folic acid, multivitamins and iron too..ended up being 11 pills a day =O Which for a 16 yr old, or for anyone, is wayy too many pills! So after dealing with UC for almost 2 years (i had UC for about a yr before i was diagnosed) nothing seemed to be working. And it was soo frustrating. I remember there were days where i couldnt get out of bed bc i was too sick. And sometimes Id have to crawl to the bathroom bc i was in so much pain! Ill never forget what i went through. It was horrible! And my doctor said our last resort would be Remicade. So i had 3 infusions of that and none of them worked. My option now was to deal with the pain or get surgery. My doctor knew how bad my disease was so he pushed surgery on me but did it nicely. And then one day I just had enough..I was so sick of being sick. So I decided to get temporary ileostomy surgery. Of course it was hard at first. But since I was on prednisone..the pain wasnt as bad as it couldve been bc steriods numb the nerve endings. I had my ileostomy surgery Nov.19,08. It was hard at first to have the bag just because I was shy about it. But then each day I kept feeling better and better. And my parents have their friends over every weekend. And we would be sitting in the living room and my stoma would make a noise and no one would say anything. They didnt even care that it did that. And everyone that knew me just got used to it. I went to get my eyebrows waxed last month and my stoma was being kinda loud (depends on what you eat bc some foods give you loooud gas haha) And I always leave it hanging out of my pants..some people tuck it in their pants..but for me i dont really care if ppl see it..99% of the ppl who do see it wont know what it is lol i even worked with it hanging out of my pants. And this guy I worked with one day stopped me and told me I had something hanging off my shirt and he was talking about my bag LOL I guess its just whats comfy for him. For me, it was really uncomfy tucking it in my pants..i hated the way it felt against my leg blahhh So my bag pretty much gave me my life back. I started playing basketball again which I hadnt done in 2 yrs bc I was too sick to. I started running which at first I could run maybe 10 ft after surgery it takes time to get your energy back..it took me about 3-4 months. So tell your son thats normal not to have energy. I actually couldnt walk from my room to the living room without getting outta breath haha it was funny. well, it wasnt at the time but it is now lol I just got my bag taken off 12 days ago. And this surgery was harder for me than getting the bag. Just bc the pain was more intense since I wasnt on steriods. I miss my bag lol I felt amazing with it and now ive gone back to the healing process. Your son will have a bit of a hard time adjusting to his new lifestyle with the bag. He should be able to do more and enjoy life a lot more with the bag. It was hard for me to look at my stoma while i was in the hospital but i got used to it pretty fast. Sorry this is so long lol But I hope it helps =D
Good luck with everything!
Posted 5/10/2009 12:58 AM (GMT 0)
I relate to most all on this thread, as I too share the mom pain. Living with the unknowns of this disease stinks. We have had a horrible year and one half, and now, things are looking up. Remission...a beautiful word. Our doc does not seem overly concerned about the 6mp/Remi combo, and she is a world class doc at the University of Chgo. We know there are risks, but think the colon is actually healing and hope we can stay on the Remi long enough to prove it is working, and long enough to get off of the 6mp. Fingers crossed.
Happy Mothers Day, ladies. No one said this job was gonna be so hard! :)
Posted 5/10/2009 11:54 AM (GMT 0)
As a mother of 2 children (son 17 and daughter 10) with UC I just want to tell you I know how hard it is to see your children suffer. We have been fortunate that for the most part my children do pretty well, but we have had some rough patches. Surgery was being considered for my son when he was 11 (before the days of remicade), but thankfully steroids pulled him out of that flare. He has also endured a 13 month long flare and again, steroids did work then, too.

I don't know what the future holds for my children... I imagine at some point it will be surgery. It's tough to think about.

I just wanted to offer my support.
Posted 5/10/2009 3:15 PM (GMT 0)
Thank you all for the time you have taken to reply to my thread. I really appreciate all your input. It is quite empowering to have access to your wealth of knowledge about this crappy disease.

I hope everyone has a great Mother's Day and is blessed with our kids feeling pretty good today!
Posted 5/10/2009 6:10 PM (GMT 0)
Hi Mamaluke,

I am thinking of you today....I hope that your son is improving a little bit more everyday and that things are going smoothly following his surgery. I am sure it is the best Mother's Day present to see him on the road to recovery!

Please keep me posted. Your family is on my mind.

Cathy
Posted 5/10/2009 9:33 PM (GMT 0)
Hi,

I'm 19 and have been in Remission for almost 7 years now. I took Remicade a few times back in 2002 and I truly believe that it gave me the jump start into Remission. My GI always says he thinks it's the Azathioprine that has worked so well for me, but as that takes time to take affect I think it had a lot to do with the Remicade. I remember one time I was supposed to have a colonoscopy because I was experiencing abdominal pain, but somehow it was decided that I would try Remicade (that would have been treatment #2) and my pain went away almost immediately.

I was scared to death of the thought of surgery as even a possibility, so hopefully that isn't the last resort for your son. However, a lot of people have had success with surgery, so I guess it just depends on each individual person.

I hope he gets better soon.

UChick
Posted 5/12/2009 2:19 AM (GMT 0)
Hello Cathy

Three days post-op and we are beginning to see some light of day. The surgery was successful and the surgeon walked out and looked us in the eyes and said............you absolutely made the right decision - the colon was very diseased and no amount of medicine would have saved it. He's had a good deal of discomfort and the gas being released it very painful, but after a long day today, he seemed to finally get some relief around dinnertime. No question that all of this is overwhelming - there's a lot to learn about the ostomy (stage 1 of the procedure) but the support and education at the hospital has been great.

While losing your colon is certainly no cause for celebration, at least we were able to say "you HAD ulcerative colitis - you don't HAVE it anymore". And we also ceremoniously threw his Lialda in the garbage can!

We are not fooling ourselves - we all know he has a journey ahead of him and that life in some ways might be altered. But no challenge that he might face going forward could equal the misery (and danger) that UC
presented to him.

While I worry sometimes that he will get discouraged along the way, I am so relieved to have him off all those toxic meds.

Take Care
Posted 5/12/2009 1:22 PM (GMT 0)
Hello Maria,

I am so glad to hear that things are going well. It must be so hard. Please know that we are thinking of your family. Let Anthony know that we are pulling for him.

I am pretty sure that we will be not too far behind you. My son, Dillon, is on his third round of oral prednisone and it is not working very well. We see the doctor tomorrow, and I am pretty sure that he will be put in the hospital and given pred through an IV. Our best plan would be to get him into remission with the pred and remicade to enable him to finish this school year (which is grade 12....final year here in Ontario) and be able to go to his prom.....he already has his suit and his date has her dress etc. Then we can relax a bit, meet with surgeons and plan our attack. I know that most of the time, though, that the best laid plans do not work out.

Has Anthony decided on the J pouch and is it being done in two steps? I am not sure how sick he was when he had his surgery. I understand that sometimes they do the operation in 3 steps if you are very ill. How is he dealing emotionally with the osotomy? It must be such a relief for you to know that he is now headed in the right direction and I hear so many stories of these young people doing exceptionally well with this operation, although I understand that it does take a while. However, a year down the road there is every hope that he will be living an almost completely normal life.

All the best to you and Anthony,
Cathy
Posted 5/13/2009 12:30 PM (GMT 0)
Hi Cathy

His surgeon opted for the 3 step process based on his health at the time of the operation - his nutrition levels were very low and his inflammation was very high. While he was quite disappointed by this, the ostomy nurse yesterday, who has had Crohns since she was 10! told him that those who get it in three stages seem to have better outcomes. She bases her info on the fact that she's had an ostomy since she was ten and has tons of friends who wear bags or J-pouches. She works closely with CCFA and volunteers with them all the time.

Yesterday was a very tough day for him - it finally hit that the bag would be on him for close to 6 months (he was thinking 3). On top of that, we changed the bag for the first time. It was pretty tough - to be honest with you, he had a major anxiety attack right after wards. We were told this was very normal. She (ostomy nurse) told him that each day the stoma shrinks and get more manageable. Sometimes its hard to tell what's at work here because the tapering off the steroids is so emotional and personality altering. . He has a particularly hard time with steroids and always has..

I am seeing now that this will take some adjusting to - learning how to use the bag, how to "disguise" it under his clothes, how to deal with the potential odors (ostomy nurse suggested putting Altoids or tic tacs right in the bag!). These are all issues to anticipate, particularly with someone young (and single!)

He is coming home today so the real world kicks in soon. Please feel free to write anytime and if you get to the point of surgery, you are welcome to call either of us with any questions. If you wanted to contact us directly, I'm sure we could figure out how to do that.

We had amazing support at Mt Sinai in NYC and really got an education there. My sister-in-law is also a high ranking nurse with a ton of experience in ostomy care, so we have been lucky with that as well.

I hope your son makes it to the prom and that it all works out in the end. I'm sure it will. I'm pretty convinced that family and medical support are a crucial part of this - it's a pretty big ordeal and you will need support.

Good luck!. Maria
Posted 5/14/2009 12:31 AM (GMT 0)
Hi Maria,

Oh man we are all thinking of you and Anthony so much. I am sure that there is a serious period of adjustment but from all I have read, things will look up soon. You seem to have a great support group....your sister-in-law must be a great help and your nurse sounds like a gold mine. How excited you must be to know that this is the LAST TIME that he needs to deal with coming off of steroids! That in itself deserves a celebration!

As you said, for these young guys being single in such an added stress, but in the long run what is 3 or 6 months. I don't know if Anthony has a girlfriend at the moment, but if so I am sure she will understand especially if she has been around while he has been unwell. And if there is not a girlfriend than I don't think it hurts them to wait another 6 months for a relationship....lol...however they may think differently..lol. My son is only 17 and he definitely can wait 3 or 6 months...at least in my view! I always figure that laughter is the best medicine.

You must be so happy that Anthony is coming home. If you work, are you able to take time off to be with him? As mothers, I really think that we need that.

Have you followed Bennie and Bratcat's story? They also, had a hard time for a while but now Bratcat is about a year post surgery and things seems to be working out so well for her! They are my inspiration and I am sure that very shortly I will also be telling people to check out how well you and Anthony are doing .

We were at the docs today and it seem that the iron that Dillon was on was really playing havoc with him. He stopped it a couple of days ago and is doing much better. However, I know that this is just the pred that is making him feel okay. In 10 days he has his next remicade, at the max dose, and we will see what the does. Our eyes are open that we are just buying time and that, most likely, he will need surgery. We will be calling on you for insight and inspiration!

I hope Anthony enjoys his first night home in his own bed and, yes, the real world will kick in but he has you to help him!

All the best,
Cathy
Posted 5/26/2009 1:55 PM (GMT 0)

Seems that all posting here are pretty much in the same boat, so I thought I would relate and vent a little to all of you. My 19 year old son was diagnosed with U/C in October of 2008. Only symptons were diahrea, mucus, etc. He's really been great until about a month and a half ago when this whole thing just flared up horribly and the poor kid has barely been off the couch. Tried Liadla, Asacol, which really didn't do much for him, and is now on 40mg. of Prednisone a day. He got better at first and then slid back down, and has pretty much been that way for a month. Lost 25 pounds, and believe me he can't afford it. So thin right now, it's breaking my heart. He eats and drinks fine, but just runs to the the b/r all the time. We are seeing a doctor at UNC here in NC hopefully this week, as it's so hard to get into their gastro department quickly. His GI doc here is great, but seems that he knows his limitations (which I guess is a good thing), and has referred him to UNC. He's just so tired, and we have him going in for blood tests today to see just how anemic he is. He was "slightly" anemic about 3 weeks ago, so I am thinking it's worse now. I don't know what these new docs might do for him, but I am hoping and praying they do something to help him feel better, and get back to living again like a 19 year old should. I am reading so much about young people being diagnosed with this and Crohn's and it's just so unbelievable. Thanks everyone out there for listening to a very frustrated and concerned, loving mom.

Posted 5/26/2009 7:42 PM (GMT 0)
I don’t know if you want to try this, or if this will help your son but if you want to then do. I feel that UC is somewhat dietary, even though my doctor does not. I have cut out gluten, dairy and most refined foods, except occasionally as I need to keep up my weight. It has helped really. I also do a thing called combination eating, which gets rid of that spasm pain. My UC has improved. I know because I was doing cartwheels in a field yesterday. I also use carrot juice to reduce any blood. Please try this book called Great Taste no Pain. My pain is still there a bit but its better, I have been 2 months with very little mucus. The only mucus I had was less than the size of a penny. I think that’s pretty good. I really hope your son gets better soon.

Lots of Love
Posted 5/27/2009 4:14 PM (GMT 0)

Hello out there

Well, we are almost 3 weeks past the first surgery and my son is definitely feeling better. The pain from the surgery is pretty much a memory, the terrible pain from the prednisone is gone, the  migraine headaches and chronic lower back pain from the UC are gone and he is on absolutely no medicine at all. The bag continues to pose some challenges - no doubt about that - but at least it doesn't seems like a death sentence to him like it immediately after surgery. He is venturing out here and there and trying to rebuild some normalcy again. not easy for a 24 yr old independent kid to move back home.

What we have learned...............the ostomy nurses that help initailly with the bag changes are a lifesaver...........there are many different types of bags to use and many different ways to attach it and different adhesives. You have to try everything.

We've also learned to stay away from red currant jam!!!Wow - what a mistake - major stinging as it was passing through - we got kind of scared and thought something was wrong! What you eat do have an impact, but for Anthony, he seems to be tolerating food quite well, has been able to diversify a lot and is definitely putting weight back on.

So............it's not a picnic, but also not the end of the world. The upside is he is free of pain, free of all those toxic meds and is looking ahead to a normal life with a lot less anxiety. Every day is a learning thing, but we are hopeful. He is so much healthier than he was when he had the UC. Like day and night. The bag is no fun, but we are looking at it as a very temporary thing (six months)

Posted 5/27/2009 7:39 PM (GMT 0)
Glad that he's doing so well! I hope the six months pass really quickly, and I'm sure dealing with the bag will get easier as time passes! :)
Posted 5/27/2009 7:47 PM (GMT 0)
Maria,

I am so glad to hear from you. Your family has been on our minds a lot. It is wonderful that Anthony has improved so much. Now that he is feeling better, time will start to pass so quickly and before you know it the 6 months will be over!

Cathy
Posted 5/29/2009 1:07 AM (GMT 0)
Cathy

You have been in our thought as well. How are things going on your end? Please let me know and never hesitate to ask me anything - I am happy to share with any parent who might need to vent!
Posted 5/29/2009 3:42 AM (GMT 0)
At least he's young and should recover from the surgery very well and have better results than an older person. The younger a person the better the body heals.
Posted 5/29/2009 4:24 AM (GMT 0)

mamaluke and collicat, I've been following this thread the past few weeks and thinking of both of you and your sons.
Mamaluke, I am glad your son is starting to feel the positive effects of surgery. Each day he should feel more and more better. Having a positive attitude (even if it isn't all the time) will help alot. And six months will go very fast.
Collicat, I hope some of your son's issues were caused by the iron he was taking. Maybe he will see a lessening of his horrible symptoms. I hope the Remicade works for him.

Surgery is a big step but for Bratcat, it was the right choice.  I can say that Bratcat was much more comfortable being with friends (and then making new ones) after she recovered from surgery (even with her ostomy) because she didn't have to worry about her UC. She didn't have to worry about if what she ate would cause her to be in the bathroom, she didn't worry about when she would go into another flare, she was able to sleep longer in the morning because she didn't have to spend multiple times in the bathroom when she first woke up. Yes her energy level was much lower after her first surgery but that is all just a memory now.

Keep us posted on how your sons are doing. It's sad that we have to "meet" under these conditions but it is so nice to have "friends" who understand what we feel.

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