My son is suffering

[jojo]

Hi all, I am new to this forum,

My son was diagnosed with Crohns when he was only 8yrs old in 2002. Ever since then my life has taken a turn for the worst, we have been constantly in hospitals and the doctors have exausted all the medication routes. The only thing left now is a colostomy! My son is 17 now and doing his A levels and just the thought of having this op is scaring him.

I don't know how to support him as he hasn't had any success over the years with the medications so he is just used to being ill all the time. His bottom end is still diseased as opposed to the top end since the beginning so the doctor suggested getting a colostomy bag to relieve his symptoms.

I just want to know if anyone his age has any experience of this bag and how they coped with it. Also I read about vitamin D, my son's doc hasn't prescribed any vitamins for him... ever. Should I ask about that too?


Please help!

 

[DustyKat]

Hi jojo and :welcome:

I'm sorry to hear about your boy and so many years of suffering, how very difficult and heartbreaking for you all.

Am I right in thinking that this will be a temporary stoma? Crohn's Mom daughter had a temporary ileostomy and there are other parent's that have had children with temporary stoma's. We also have a Stoma Forum here and you will also find fab advice there. There are younger members that visit the stoma forum.

I would certainly ask about supplements but have some testing done first and then go from there. First up ask for Full Blood Count, Liver Function Tests, CRP, ESR, B12, Iron Stores, Folate and Vit D. There are supplements that you may wish to commence regardless of health e.g. Krill/Fish Oil. The issues surrounding deficiencies can be very much dependent on where his Crohn's is located. If he only has perianal disease he most likely won't have issues with malabsorption on the other hand Ileal Crohn's presents the most problems.

Good luck to your boy and I hope he can find some lasting relief soon!

Dusty. xxx

 

[Terriernut]

Oh what a tough road you've been on! We have a subforum here for parents with children with IBD. http://www.crohnsforum.com/forumdisplay.php?f=49

We also have the stoma subforum you might want to check out. I myself have a colostomy. It was the best thing ever for me I admit.

I see that Dusty is replying as I'm typing this (wonderful lady that Dusty!)

:hug:

 

[David]

Hi there and welcome. I'm so sorry to hear about what you and your son have been going through My heart goes out to both of you.

Would you mind sharing what medications they have tried with your son? And have you tried total enteral nutrition at any juncture?

I wish you and your son all the best.

 

[Jocky]

Hi jojo, i'm sorry to hear your son is suffering:stinks:

I was about 16-17 when i had my colostomy, it was a huge decision to make at the time but for about 2 years afterwards everything was great, i even managed a school trip to Switzerland:thumleft: Sadly it didn't last as my Crohn's eventually took over again but since my permanent illeostomy five years ago, I haven't had a single problem with my bowels (just those darn EIMs!) If i could go back in time, i would skip the temp colostomy and have the permanent ileostomy but that's easy for me say now, i doubt i could of made such a huge decision at the time!

It's down to personal choice but i feel so liberated with my stoma but i'd never have mine reversed even if i could!

Good luck with your decision, I'm sure the both of you will make the right choice for him

 

[jojo]

Thanks for that post Dusty!

The specialist he sees said that it's not reversible (not temp) because he has Crohns, as apposed to if he had UC in which case that would be possible. Dunno what the implications are but at our meeting with him last week the doctor couldn't go into too much detail as my son wasn't prepared to even contemplate the thought right now. I am in my thirties and married so if I had the condition and suffered like my son is doing I would jump at the chance to have a bag but alas, he is only 17 and thinks differently to what I do.


x

 

[jojo]

Hi David,

My son has been on Asacol (i don't know the name of that med if you are in US or other countries). He's also been on azathioprine, infliximab infusions and now Humira.

Over the years I have tried many times to rid this disgusting disease from my son's body. It has left him with stunted growth, he is very tall (nearly 6ft) but has failed to show any facial hair (only sparce thin hair on his chin) and feels very weird. His body is that of a 13 year old boy.

I have tried all sorts of Chinese Herbalists at my own expense, to no avails sadly as I just couldn't accept the fact that my son has this terrible disease that was sucking him dry. He has been skin and bone and it was very difficult for me to accept it.

He has been on an elemental diet about twice since being diagnosed, both times he didn't respond to this treatment. The only thing that has worked are Prednisone on very high doses and when he is weaned off, he is ill again. It's the same vicious circle, again and again, year after year.

Holy crap, I am done!!!!!

 

[jojo]

Hi Jocky,

I really don't have any experience of knowing the terms that you are using so please pardon my ignorance in this subject. All I know is that the doc said that my son will need to wear a bag and the surgery is non reversible and that its called a colostomy. I have researched it since the appointment and have read about horror stories with mucus coming out of the rectum even though the rectum is not in use and other gross stuff.

I said to the specialists in 2002 that please, please take my insides and give them to my son, i will happily live with this disease so that he can flourish. He is handsome and fair skinned and very clever, and it's a shame that his body is being ravaged by this condition.

I didn't even know what Crohns was before 2002. I have had to learn how to cope, it has been difficult and I am on anti-depressants as I took on all the responsibility on my own shoulder and didn't tell any of my family about my son. Only in the last few years have I opened up when I got help for myself. I hate it so much and I want my son back.


Is there no medical procedure that will give him new insides or take mine and plant them into him???

Seriously

 

[DustyKat]

Oh Mum...:hug::hug::hug:...what we wouldn't give to trade places and take all the pain and suffering away from our children.

There is such a thing as a bowel transplant and there is a fellow that pops in occassionally that has recently had one in the UK...

http://www.crohnsforum.com/showthread.php?t=31907

There is also a treatment called a Stem Cell Transplant...

http://www.crohnsforum.com/showthread.php?t=22259

I thought they may start with the surgery being temporary and see if resting the diseased part of the bowel helped to heal things up.

Unfortunately elemental diets aren't as successful the lower down you go.

Thinking of you and feeling your pain hun, :heart:
Dusty. xxx

 

[David]

Based upon what you said, I was going to suggest stem cells as well but Dusty beat me to it It's a pretty exciting therapy in my opinion.

 

[bentlr]

My son was diagnosed with Crohn's 10 years ago. He has been successfully treated with a probiotic diet (use only a reputable product like VSL#3). Takes no drugs. Lives normal life. Also he was found to have several food alleges which complicated his problem. You need to research MAP (Micro Avium Para Tuberculosis) on you tube. Your doctor will poo poo this theory and he is wrong. It is passed through dairy products which your son should get off of as soon as possible. Also research Jonie's (?) disease in cattle to convince you of MAP's contribution to Crohn's (not the cause, but the catalyst). 85-90% of Crohn's patients are infected with MAP. MAP does not have the same effect on people without a genetic predisposition for Crohn's. Read "Bacteria for Breakfast" by Dr. Kelly Carpa to understand what is going on in your son's intestine. Be very cautious putting full trust in the Medical profession on this issue. They will recommend the most expensive sollutions and and drugs, many of which do as much harm as good. UK and Australia are the leaders in Crohn's studies--not the U.S.

Good luck,

 

[Tesscorm]

Hi Jojo,

I am so very sorry for all the suffering and heartache you and your son have been through! My son is also 17 and I can only imagine how upset and frustrated I would also feel.

I do encourage you to look through the Stem Cell thread that was linked above. I have no experience with medications, however, have read that some medications are combined to increase their success (such as methotrexate and remicade) (has your son tried methotrexate?).

Also, there are some here who have had success with Low Dose Naltrexone (LDN)

http://www.crohnsforum.com/forumdisplay.php?f=32

It is not commonly prescribed for Crohns (was originally developed for other uses), however, as I mentioned, there are some who have had success with it and there are no risks from the drug.

Please do look through the treatment section - there is another biologic that you didn't mention, Cimzia, that is also used for crohns.

I truly hope your son is able to find a treatment that works for him soon!

 

[bentlr]

Remicade is one of those drugs that can do as much harm as good. The manufacturer was sued for 40MM because they failed to tell doctors the full story on the side effects of this drug. Doctors get their training on drugs from the manufactures who have millions riding on their "unbiased" selling practices. This is a very, very expensive drug with horrible side effects and my understanding is that once on it you have to stay on it. All I can say is that my son has been off all drugs and is doing very well.

Just sayin.

 

[jojo]

Oh Mum...:hug::hug::hug:...what we wouldn't give to trade places and take all the pain and suffering away from our children.

There is such a thing as a bowel transplant and there is a fellow that pops in occassionally that has recently had one in the UK...

http://www.crohnsforum.com/showthread.php?t=31907

There is also a treatment called a Stem Cell Transplant...

http://www.crohnsforum.com/showthread.php?t=22259

I thought they may start with the surgery being temporary and see if resting the diseased part of the bowel helped to heal things up.

Unfortunately elemental diets aren't as successful the lower down you go.

Thinking of you and feeling your pain hun, :heart:
Dusty. xxx

Hi Dusty,

Thanks for the links, it's quite humbling to read that other people are going through a lot worse and have still tried to stay positive. From what I gather from reading it briefly that it is only offered to very very serious cases as a last resort. So I don't think my son will qualify at the stage he is at right now. That still doesn't negate the fact that he is still struggling and isn't able to cope.

Stem cell surgery won't be offered to him even if we wanted to fund it ourselves.

 

[jojo]

Yes, I forgot about methotrexate. He has been on it for about a year I think. So many meds and I tend to forget all the various names as there are so many to remember!

x

 

[DustyKat]

Hi bentlr,

It is wonderful that your son is able to mange his disease without the need for drugs but I think we need to be mindful of the fact that for many people no drugs is not an option.

Remicade does have the potential do more harm than good as is the case with most drugs and not just those used for IBD but it also has the potential to save lives as well.

As you would know the journey with IBD is a highly individual one and all paths must considered and most are trodden before we find what is right for us. The decisions we make are never made lightly or without consideration and are arrived at through own personal experience.

Dusty. xxx

 

[jojo]

Hi Jojo,

I am so very sorry for all the suffering and heartache you and your son have been through! My son is also 17 and I can only imagine how upset and frustrated I would also feel.

I do encourage you to look through the Stem Cell thread that was linked above. I have no experience with medications, however, have read that some medications are combined to increase their success (such as methotrexate and remicade) (has your son tried methotrexate?).

Also, there are some here who have had success with Low Dose Naltrexone (LDN)

http://www.crohnsforum.com/forumdisplay.php?f=32

It is not commonly prescribed for Crohns (was originally developed for other uses), however, as I mentioned, there are some who have had success with it and there are no risks from the drug.

Please do look through the treatment section - there is another biologic that you didn't mention, Cimzia, that is also used for crohns.

I truly hope your son is able to find a treatment that works for him soon!

Hi there,

I don't recall Cimzia being prescribed to my son so don't know if i should approach the doctor to see what he says. So far he hasn't said of any other option left apart from the operation that I mentioned.

Lots of love to your son
xxxx

 

[bentlr]

Just my opinion based on a lifetime of experience. Drugs should be the very last line of defense rather than the first, but as you say it is an individual choice. Introduction of a drug is effectually introducing a poison into the body. And you are right each person handles a drug differently making the prescription of a drug not much better than a crap shoot. The human body evolved over millions of years to ward off disease or we would not be here today. There are many promising and effective treatments which do not involve surgery or drugs, some with amazing results, but mostly unknown. You will have to research to find them because no one is advertising anything they can't profit from by a patent. On is Helminthic therapy (look up on Wikiedia and the internet under pig worm therapy to see one reason third world countries don't have a crohn's problem. The best way to fight a disease is to help your body do what it has evolved to do. My son developed an fistula from his crohn's. His option was $20,000 surgery with less than 50/50 success rate. We found a 30 year old proceedure not involving surgery with a 99.7 success rate and a cost of <$400! In six weeks his fistula was gone. No doctor we spoke with knew anything about it. (it involved no drugs). Modern medicine can do amazing things, but it has a dark side its foolish to ignore.

Good Luck

 

[DustyKat]

One of the reasons people live as long as they do today is because of modern medicine. Of course this is not the case for everyone but it is for many.

I don't belive anyone here makes the decisions they do without considering all aspects of a given treatment, good and bad.

I wish more than anything that my children had choices and time but they didn't. I came within a whiskers breadth of losing my daughter to this disease, no amount of medicine whether it be conventional or alternative was going to heal a ruptured and infarcted bowel and overwhelming sepsis. She was undiagnosed at the time so that is testament to what untreated Crohn's can do, it does kill.

We discuss and welcome all treatments, theories, lifestyles, whatever here. I embrace them all equally but what I don't need is to feel any more guilt than I already do because both of my children have this disease and I can't take it away from them. I don't need to feel any more guilt about the heartbreaking choices I have had to make. This is a support forum first and foremost and I have no issue with you not believing in medication and I don't need a reason why you have that opinion, more power to you if you can successfully go down that path but don't take the moral high ground because I haven't trodden that path.

Dusty. xxx

 

[jojo]

I can't find anything on Helminthic therapy in the United Kingdom. Is it accessible here or do I have to travel in order to talk to someone about it?

 

[Lilyworm]

Just my opinion based on a lifetime of experience. Drugs should be the very last line of defense rather than the first, but as you say it is an individual choice. Introduction of a drug is effectually introducing a poison into the body. And you are right each person handles a drug differently making the prescription of a drug not much better than a crap shoot. The human body evolved over millions of years to ward off disease or we would not be here today. There are many promising and effective treatments which do not involve surgery or drugs, some with amazing results, but mostly unknown. You will have to research to find them because no one is advertising anything they can't profit from by a patent. On is Helminthic therapy (look up on Wikiedia and the internet under pig worm therapy to see one reason third world countries don't have a crohn's problem. The best way to fight a disease is to help your body do what it has evolved to do. My son developed an fistula from his crohn's. His option was $20,000 surgery with less than 50/50 success rate. We found a 30 year old proceedure not involving surgery with a 99.7 success rate and a cost of <$400! In six weeks his fistula was gone. No doctor we spoke with knew anything about it. (it involved no drugs). Modern medicine can do amazing things, but it has a dark side its foolish to ignore.

Good Luck

What was the therapy you eventually used?

 

[bentlr]

I must emphasize that the human body reacts differently for everyone. A certain amount of trial and error may be necessary. My son found that using an effective probiotic (there is no quality assurance in this area so you must use a reputable laboratory) kept his crohn's in check without any other medication. He was checked for food allergies and that was an eye opener which has helped him enormously. Important to realize that autoimmune diseases have NO CAUSE. An important clue in understanding that the cause probably is a result of what is not there rather than what is there. "An Epidemic of Absence" is a must read in this area to get a grasp the overwhelming amount of evidence pointing in the direction of what is missing in the bodies of modern man proportional to the rise of autoimmune diseases. I must point out that while the evidence is strong the profit incentive is not in this direction of research. One need only research the news on "fecal enemas" to fight intestinal imbalances (known 10-20 years ago) to see how slow low profit alternatives are researched and decimated. "Bacteria for Breakfast" by Kelly Karpa is another must read. Good Luck