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Docs want to refer my 10 year old for surgery

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Ulcerative Colitis
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Posted 1/16/2013 2:02 PM (GMT 0)
My son has had UC since the age of 5. It is pan colitis - mild to start with, and kept under control quite well. But he started a major flare up a year ago (sparked by iron tablets, I believe) and nothing is working. He had to come off azathioprine as he was allergic to it (imuran in the US I believe, we are in the UK).

He is currently on 20mg of prednisilone, 4x400mg Asacol and a weekly injection of methotrexate, which he has been having for six months. Things were ok but not great - still several bloody BMs a day, though no pain (he has never had more than a slight tummy ache with the UC). But a colonoscopy in November revealed that his colitis was worse - now moderate to severe. He had a fever after the colonoscopy so was put on IV antibiotics for 2 days in hospital.

My son has also had six blood transfusions in the last year due to anaemia. Despite all this, he continues to go to school and doesnt view himself as ill.

Just before Xmas he had his first dose of Infliximab (remicade in the US). Things improved for a couple of days, then carried on as before. He had a terrible cold over Christmas with a high temp and was ill for a couple of weeks, so his second dose of Infliximab was delayed by a week - he had it a couple of weeks ago, and no improvement.

Docs say they have no other options - they have no more drugs to try and say we need to see the surgeon. Is there anything we can do to stop him having his colon removed at the age of 10?

I am overwhelmed by all the possible alternatives and supplements and don't know what to give him. We tried VSL3 with no luck. We have read about SCD and tried 2 weeks of gluten free to start with - my son lost 2 kilos and was emaciated. we had to stop it. I have read about fecal transplants but my husband and I both have the herpes virus so assume we are unable to donate. Have tried to get in touch with Dr Borodys clinic - we would def go to Australia if a good chance of improvement - but nobody replies to my many emails, and they won't talk on the phone to overseas patients.

Please, can anybody help? I am really quite desperate. Thank you.
Posted 1/16/2013 2:36 PM (GMT 0)
Hi Bex,

I feel for you as my son (14yo now) has UC. Do you have access to a healthy fecal donor and you could try FMT at home?
Also, have you tried any rectal meds - either mesalamine enema or steroid foam enema?
-Chris L
Posted 1/16/2013 2:38 PM (GMT 0)
I'm sorry that your son's been dealing with this for so long. I have a daughter who has the same dx and it's been a struggle.
If you ware willing to travel Boston Children's Hospital will do FTs on children with UC. It will take a month or more to arrange though. There's also a naturopath in Oregon who is doing it with screened donor stool. If you want the details I can post them later. Dr Borody's will do international telephone consults but he will not treat children (we tried that when my daughter was first diagnosed).
If you want to speak to other parents whose children have had surgery, email me and I"ll send you some links to a few groups.
My daughter has exhausted all medical options as well and she's on a diet similar to the scd (paleo - dairy free). If you are willing to try it, I do think it's worth a shot. It may not work but it might.
If it comes down to it, I do know quite a few children now who have gone through surgery and are doing well and it's likely your son will too.
Posted 1/16/2013 2:39 PM (GMT 0)
I'm so sorry you are facing this with your young child. You say he has only had two doses of Remicade? It may take up to 4 or 5 infusions to work. Has that been discussed?

Can you seek out another GI for second opionions? I had surgery for my UC but I have a 10 year old myself and I would be freaking out if someone told me he needed his colon out. But having said that, I am healthy now and UC free. I know I would want the same for my child if I was faced with that. Most children do amazingly well with surgery.

Hopefully someone can come along with some ideas for you to try. Good luck with everything.
Posted 1/16/2013 2:40 PM (GMT 0)
I just read about your son's weight loss on gf - the key to these diets is to make sure they are getting a LOT of fat when you remove the carbs. nut butter, coconut oil/milk, animal fat, avocados, avocado oil etc. Otherwise they will lose too much (that's happened to my daughter too in past attempts but this time she hasn't lost anything knock on wood). It sounds counter intuitive but that's the basis of the paleo diet and it seems to work well for us (I don't think the scd stresses that enough even though they are almost the same diet).
Posted 1/16/2013 2:41 PM (GMT 0)
I am sorry you're going through this. There are a lot of alternative treatments that may be worth trying. There is a thread on the top of the forum main page called resources, in there, it goes through some of the options that are less well-known. Did they say he could try humira?

I know this isn't what you want to hear but, surgery can have great results. It's not something any of us want to confront, and I HOPE he doesn't have to but on the position side, I've seen many people who have had surgery with great results and they are now UC free. I am not sure about the surgeons in the UK definitely do A LOT of research.
Posted 1/16/2013 3:08 PM (GMT 0)
what about trying to heal the colon with vitamin e enemas? You can read about it at the curezone.com site and it may help heal a little? I'm sorry you're going through this as a parent and I'm hope your son get well soon!
Posted 1/16/2013 7:04 PM (GMT 0)
Fwiw, i have had recent improvement on hydocort enemas combined with slippery elm 'tea'. The enemas, while miserable to insert, are less poisonous to the general system and the elm is benign. It cant hurt at this pont, and I for one would not want surgery. Best of luck.
Posted 1/16/2013 7:10 PM (GMT 0)
I think I'd at least go to the surgical consult so you can learn what the options are, potential outcomes, etc. It might help you make a decision about which direction you'd prefer to head. A consult doesn't mean he'll have to have the surgery.
Posted 1/16/2013 8:51 PM (GMT 0)
Bex17-
Have you heard of LDN?
There is a lot of info concerning Low Dose Naltrexone under the
U C Resources tab. I think it's the 13th post.
Some have experienced success with LDN when all else has failed.

The 11th post under the Resources tab contains a description of InSoFla's regimen which includes information about diet and other alternatives.
There is a lot of information about low dose naltrexone on the internet including YouTube presentations by Dr. Skip Lenz who runs a compounding pharmacy (Skip's Pharmacy) in Boca Raton, FL from which many get LDN. The staff of the pharmacy is very helpful and knowledgeable.
The beauty of the drug is the absence of dangerous side effects.

I sincerely hope that you will find an alternative other than surgery for your son. It's heartbreaking to see someone so young suffer with this disease. Whatever happens, I wish you the best.
Posted 1/16/2013 9:15 PM (GMT 0)
Thank you so much to everyone for your replies so far. It's heartening to have your help, advice and support. Our consultant says that enemas (he was talking about steroid ones) are only effective for disease low down - in the rectum etc. He says no point for pan colitis where the whole colon is affected. He also dismissed LDN when i mentioned it a while ago - said may have some effect in Crohns, but none for UC. I will ask him again - And also look at vitamin E enemas. Killcolitis is your daughter on a paleo diet? My son is so fussy about food I genuinely think he would refuse to eat. How is your daughter doing?
Posted 1/17/2013 2:15 AM (GMT 0)
I'm so sorry that your son is sick. Here are my thoughts on what might help.

1. Your doctor could be wrong about the enemas. My son was diagnosed with UC with ulcers throughout the entire colon as well. Our first doctor said no to enemas for the same reason and wanted to start remicade. He actually seemed offended when I asked him about enemas. I wouldn't have known about them if I hadn't been on this forum and seem all of Quincy's posts!!! I found a different doctor who would write us a perscription and that is when my son finally was able to get into remission. We are doing one in the morning and one in the p.m. (mesalamine). Even though he has inflammation in his entire colon, the inflammation in his rectum and low colon seem to be the most extreme. I had read one of Quincy's posts that said this is typically a problem which is why the enemas tend to work and therefore decided we needed to try the enemas. It worked, my son has been in remission since starting the enemas (although only a few months). We are going to try going down to one per day soon. My son never had bad stomach aches or cramps either, just a very mild ache at times. He has always been able to eat, even during a flare.

2. I agree with the other posts about trying scd/paleo. It wouldn't hurt to try the diet. My son is also picky and I don't want him to lose weight or be extremely upset emotionally because of not being able to eat what he likes (he loves to eat)! I am just trying to slowly integrate this type of diet into our lives and I am finding that there are a lot of things that I can make that he enjoys eating. It can be overwhelming at times but just do the best you can.

3. The other thing I do is homeschool. Unless your son absolutely loves school, I would consider it, perhaps temporarily. My son gets plenty of rest, has very little stress and has plenty of play time and excercise. He doesn't have to get up early and deal with sitting in a classroom all day. He gets his work done in the morning and the rest of the day is fun! He can eat healthy snacks mid-morning and mid-afternoon. He sees friends, takes guitar lessons and swims on a swim team.

4. I would consult with a surgeon while you are trying some other things. It doesn't mean you have to go that route but at least you will have a better understanding of the advantages/risks. I often wonder if I will be facing this someday with my own son. Some of the people on this forum who have had surgery have been gracious in answering my questions about it. I am thankful that it is an option for him if his UC gets worse and he cannot get into remission. I think that even if he ends up with surgery he can still have a good quality of life.

Hang in there and let us know how things are going. I'll be thinking of you and your son.
Posted 1/17/2013 3:54 AM (GMT 0)
Personally, if my child gets UC, he will have surgery. We actually thought he did have it, he was having bloody stools with mucous and some other problems. And I told my husband, that he would have surgery, there wouldn't be any drugs or diets or anything. And my husband agreed. However, I have had surgery and know what it's like.
I totally understand why someone who hasn't seen the post surgery side would be hesitant to go for it.
My thought was just that I had been through so much, and people go through so much, so many drugs, so many sacrifices. He was 3, I just couldn't see a life time of that for him.
But that doesn't mean there is anything wrong with trying things. It's just very personal.
I do agree that regardless you should go ahead and get the consult. It may help ease your mind, and if he ends up with emergency surgery you will be established with someone. Honestly it's not a bad idea for anyone with UC to have a surgery consult. Or anyone with a chronic disease that sometimes requires surgery for that matter.
Anyway, I am so sorry to hear that you have to make this decision. I know that having your child sick is so much harder than being sick yourself. I would rather be sick everyday than have him sick one day. Good luck to you, I hope you find a good answer.
Posted 1/17/2013 7:05 AM (GMT 0)
Theres gotta be other things to try. Just terrible to hear about a 10 year old going through this:(. Scariest thing is apparently its genetic which gives me scares about me having kids which is a ways away for me but still.
Posted 1/17/2013 12:15 PM (GMT 0)
Please try the paleo diet. Check my signature for other things which i tried and helped me. Meds either did not help me or caused great side effects. There are alternatives to modern medicine.
And try enemas, mesalazine enemas, even for pancolitis. They did not help me but have helped many people.
Posted 1/17/2013 1:27 PM (GMT 0)
I had my ileostomy surgery when I was 10 years old - that was 36 years ago and I have never regretted it. It was the best thing my parents ever did for me.

Your son's story sounds like mine... diagnosed at 5, numerous blood transfusions, diets, pills, etc

My parents' biggest fear was that one day I would turn around and say 'why did you let them do this to me?' I never have. Surgery gave me my life back and jhas enabled me to live it without pain, pills, etc.

Life is good!
Posted 1/17/2013 1:53 PM (GMT 0)
     I was just going to say...talk to Shaz over on the ostomy board, but Shaz beat me to it.

     My heart goes out to you.  I didn't develop UC (actually UP, proc***) until I was 52 yrs old.  I just cannot fathom what you and your son must be going through.  This is a terrible disease, but not hopeless. 

     Best of luck and God bless.

Posted 1/17/2013 5:46 PM (GMT 0)
Thanks but I want to do everything possible before resorting to surgery. We probably will see the surgeon though.

Susan451, sorry to hear about your son, but sounds as though he is doing pretty well. thanks very much for your advice. We are seeing our gastro doc tomorrow and I will ask again about enemas. Is mesalazine better than the steroid ones?

I will also think about starting him on the SCD/paleo diet but very daunted...
Posted 1/22/2013 4:15 AM (GMT 0)
I would try the steroid enemas first, and then if you see improvement switch to the mesalamine enemas as a maintenance medication. I was also wondering if it could take a month or so for the Remicade to work? What did your GI doctor say?

My son was on oral prednisone and we were having trouble with weaning him off. He would start having cramps when we decreased his dose. Once we started the mesalamine enemas, we were able to decrease the prednisone without him having any return of symptoms. I think if he has another flare I will see if we can try the steroid enemas first before going to oral prednisone.
Posted 1/22/2013 4:40 AM (GMT 0)
I just want to say that you need to give Remicade more time, unless the condition is deteriorating. It's taken me a long time to feel well on it, even though they said I was healing very well after a few months on it. I still saw blood 5-6 months after being on it, so it takes time. One of the nurses at the infusion center told me that it can take a long time (6 months even) to get into remission if the disease was really bad when Remicade was started.

My sympathies are with you. Best of luck, we're all here for you.
Posted 1/22/2013 2:21 PM (GMT 0)
Hi
My son is 20 and very like your son. We are in a similar situation to you. Will has tried nearly everything and the remicade only worked for 5 infusions. I had him referred up to St Marks in London. At least they are the centre of excellence for all this. We have met the surgeon but we are trying to hang in there. You must definitely try ldn. It can help UC - my son takes it and we are sure it is keeping his crp levels down and for many it has changed their lives. You can get it by going on the prescribe4me website. Will takes 3mls of liquid ldn. If you want more info join the lowdosenaltrexone yahoo group which I belong to and then contact Jayne Crocker who represents ldnnow in the UK. She is brilliant and will definitely encourage you to try ldn. You cant lose. All I can say is that if your son does need surgery have it done in the best possible place by surgeons who do it regularly. I dont know if he can have J-Pouch done at such a young age but he could have it done in the future if not. Please let me know how you get on. Sue
Posted 1/23/2013 1:10 PM (GMT 0)
Hi again. Not a good meeting with doc on Friday. He will give my little boy one last infusion of Infliximab (remicade) next Friday, then do a colonoscopy 2 weeks later. if no improvement, says we must schedule surgery within the next couple of months. He has also prescribed mesalazine enemas which we are starting tonight. He said no to the steroid enemas. I am not feeling hopeful, but I am definitely going to check out LDN, thanks Sue. I have also booked a Skype call with Dr Davis in Oregon to talk about fecal transplants tho not sure if you can do this while on Infliximab. Think my younger son could be a possible donor. Sue, I didn't know St Marks was a centre of excellence - for children too? Thank you for your help everyone at such a bleak time for us.
Posted 1/23/2013 1:34 PM (GMT 0)
Hi Bex,

So sorry to hear about what your family is going through with your little one.

In my experience, doctors dismiss too easily LDN and other alternatives, including diet, which do work for many with UC.

I would strongly urge you to do your due diligence with LDN.

Call Skip's Pharmacy in Boca Raton, FL - he's quite nice, very knowledgeable and probably has the most experience and knowledge on LDN having some 20,000 + patients worldwide, including a large pediatric population.

Also, diet modification - as in gluten and dairy free - actually Paleo which is an anti-inflammatory diet is quite good, along with certain supplements, like probiotics, slippery elm, l-glutamine among others.

You say that VSL #3 didn't work. What happened? How long did you try them for?

Has your son's vitamin d3 levels been checked, as there's a strong correlation between low d3 and IBD?

If you are interested,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope your son will feel better and let us know how we can help you.

 

Just want to say, don't let the doctors rush you into making a life-altering decision; once your son's colon is out it cannot be reversed.

 

 

Posted 1/24/2013 6:11 PM (GMT 0)
Hi Bex
St Marks is only a gastro hospital; that's all they do, that's why we went to them and I have to admit we have had very good treatment. I dont know if they deal with children too and I dont know if they have a paediatric department but you can ring and ask. They can do keyhole surgery there too. Have a go at the ldn. I think it's really worth a try. Some people do brilliantly on it. I hoped Will would do better but he is well so I am sure it is helping. I dont know where you are in the UK. We are in the South, Eastbourne. I can really relate to what you are going through - I spend so much time researching just in case I stumble on something. Please would you let me know how you get on with your skype session re the fecal transplants. I would be really interested to know. I think if you click on my name you can email me. Please do. Sue
Posted 1/26/2013 5:32 AM (GMT 0)
Before going for surgery try Fasting. For a 10 year old, Juice Fast.
The juice must be fresh (not bottled) and ideally organic. Do some research to find out more.
Fasting is the only thing that I've found to alleviate the symptoms (and possibly heal the condition long-term, though I am in early stages and yet to find out). I have not tried medications and don't intend to, I would rather juice fast forever.

Note: I am not a medical professional, perhaps you should consult one before putting your son on a juice fast though I don't believe it can cause any harm.
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