Please help my son

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Desperatohelp
New Member


Date Joined Jun 2010
Total Posts : 5
   Posted 6/16/2010 2:34 PM (GMT -7)   
Hello all,
 
I am a very very sad mum of a 15yr old boy. He is suffering so much right now and is on methotrexate injections. He has has three relapses of Crohns this past year. I cannot cope anymore as I feel utterly useless.
 
He was diagnosed in 2002 and we have both been battling this vile, vicious and evil disease this whole time. I am now afraid for my son who has only one more medication left to try before needing surgery. How can I cure my son? Why cant the doctors implant my "insides" into him and give him MINE!
 
Please help!
 
*I am sorry but I had to edit your post, as discussion of self harm are not permitted*

Post Edited By Moderator (Nanners) : 6/17/2010 7:07:09 AM (GMT-6)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/16/2010 3:10 PM (GMT -7)   
Have you tried any of the diets? I follow the Specific Carbohydrate Diet (read about it at http://www.breakingtheviciouscycle.info/ ). It has done wonders for my crohn's! There is also a diet called The Maker's Diet which has helped people with bowel disease.

Some people are also finding success with LDN (Low Dose Naltrexone). The studies for it are certainly hopeful!

Hang in there!
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 6/16/2010 3:31 PM (GMT -7)   

you desperate, like me surgery was a good thing, it put me in remission for awhile, so don't discount it as a bad thing, think positve that if your son has surgery,  it would put him into remission, I was 20 when I first got cd, and just beginning my career as a horse jockey, I was down for a year but after surgery i was racing within 3 months after my last surgery, I got 17 years remission out of that.

 


artist guy


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/16/2010 3:58 PM (GMT -7)   
My heart goes out to you, Desperatetohelp. This must be such a heartbreaking situation for you.

Would you mind telling us what medications your son has tried? That way, we might be able to offer you some more specific encouragement and support than we can right now.

In the meantime, I would echo what ArtistGuy has said. Some people have wonderful results after surgery, and have long and fulfilling remissions afterwards. As Spooky said, dietary therapies might be helpful too. You might like to click on the "diet" and "medications" links in my signature and see if there are any tips that may be able to help you.

You might, for instance, be interested in trying enteral nutrition. There have been some very good results with this therapy, especially for teenagers.

All the very best to you and your son.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 6/16/2010 4:02 PM (GMT -7)   
Whoa Mum! I know how NOT easy it is to be the Parent of an IBDer. I've been one for 11 years now. My prayers have never been answered to switch guts with my Daughter. I'm still waiting. Always praying for a cure but that prayer hasn't quite been answered yet either.
Been in those desperate times too. 5 years worth while she was trying to finish High School and get through College. M-I-S-E-R-A-B-L-E. BUT, I found I have one tough, strong, resilient Daughter who is much better at dealing with the hand given her than I am. Even though she is now a full fledged Adult, I still worry and fret about her health everyday.

What is the one medication that hasn't been tried yet? Surgery might be the answer, only your Son's GI has the answer to that.

I feel your frustration, but somewhere down the line it will get better with whatever treatment/surgery it takes to get your Son to a healthy stage. It's just a miserable time getting to that point! It is out of our Parent's hands. We are the moral support, hope, faith and TLC to see our Kids through the tough times.

Post Edited By Moderator (Nanners) : 6/17/2010 7:09:01 AM (GMT-6)


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/16/2010 6:06 PM (GMT -7)   
Just sending my support -- and hoping some of the great advice here will help.

Enteral nutrition to give his gut a rest, SCD diet, surgery....something will help.

((hugs))
Official dx September 2007.
currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/16/2010 6:44 PM (GMT -7)   
So sorry your son is suffering. It must truly suck to watch your child battle this horrible disease. Stay strong for your son; he needs you.

I suggest you try the Maker's Diet or SCD or a combination of both.
Get your son some strong probiotics and multi digestive enzymes.
Get him to drink green tea and chamomile if you can, no sugar, only unpasturized honey.
Cut out all sugar, dairy, processed food for a several weeks.

The point is to put in the digestive system only what aids in healing and what is easy to digest. It definitely helps.

I had surgery and got sick right after. It can go either way. Once they take the bowel, it's gone forever and it changes your body's digestion. A family member had surgery and has been in total remission for about 15 years.

Try the diet before you opt for a surgery which may or may not help for long.

Best wishes!

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 6/16/2010 6:55 PM (GMT -7)   
So sorry your going through this horrible nightmare! I'm a Mom too and you'd give anything to not see your child in pain! Blessings to you! 
I have to say I agree with "artist guy" about the surgery. I've had two surgery's and that was a choice of  mine because I'd rather take out the infected area than resort to ALL the med's and not have any med's left to try later....I was 37 when I was diagnosed. Dr. said I was still young...but your dealing with really young!  I have been in remission since. I do have some side effects from the surgery such as alot of D. If I take a good probiotic and follow a good diet I'm alot better! Before surgery... pain, weight loss, and weakness. Couldn't do much of anything!
Best Wishes
Heather
 
Flowery
 "Get busy living or get busy dying"
Dx in 2005 with Crohns after a Hysterectomy. Re-section in 2006...came apart so got to do it again! Frequent Kidney stones and Shingles... a new present as of 08-09 Diabetes Type 2. Total of 12 surgerys.
Imran, Asacol, Colestid, Bentyl, Lamotil, Paxil, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!
 
 
               
                        


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 6/17/2010 2:30 AM (GMT -7)   
 
I feel your desperation and I know you would give anything to have this rather than your son but you can't!! He needs you to be strong for him (I do know this is difficult) but it is you who will see him through this, support him, give him strength and be his advocate!
If you start losing it then it will seriously impact on how your son feels about this disease.
I do not know too much about surgery but what I have learnt that is a lot of people appear to have been better off since surgery and have not regretted going along that route (if they had a choice)
 
There are so many theories about what causes crohns and equally so many different approaches to 'controlling it'-mostly medical but not all. Some people have had good results with the SCD regime but there is no way that my son would entertain it.
 
My son was diagnosed last year (at 16) so we are still quite new to this journey and it has been a real rollercoaster ride of emotions, he gets put on entereal nutrition, some discomfort, drugs, discomfort, more drugs more pain................. it is continuous. You start off positve,  treatment fails, you hit a low, try something different full of optimisim, fails, on a downer again.
Just keep on reading/researching and asking questions and don't feel bad about questioning answers you are given either.
 
Please, please try and not let your son see how you are really feeling (come on here and let it all out) sometimes we think that our children are almost oblivious to our emotions or what you go through to support them but they aren't and he will get his strength from you (I had a wonderful note from my son on Mother's Day thanking me for supporting him through this etc-made me quite tearful) 
Be strong/positive that is what will keep him going :)

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 6/17/2010 2:31 AM (GMT -7)   
I'm sorry to not have any hard and fast answers for you at this difficult time. I can so relate to your situation as a parent of a Crohn's sufferer as well.  I can only offer my support and prayers. I want to reassure you that hope springs eternal. I know that often times like this, we almost need to hit rock bottom. But after that, you have to continue on, showing your son all the support he needs, and making the best decisions for treatment. I hope that better days are ahead. Please keep posting updates. THere are alot of experienced people here that can help. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Desperatohelp
New Member


Date Joined Jun 2010
Total Posts : 5
   Posted 6/17/2010 3:47 AM (GMT -7)   
Thank you so much for all your messages of support and encouragement. My son was first diagnosed with Crohns when he was 8yrs old. He was hospitalised for several weeks and prednisolone brought him out of that situation. He recovered almost straight away and gained lost weight.
 
He then stayed symptom free and in remission for about two years while he was on Asacol. Ever since 2004 he has not spent one year without a relapse, he has been on Azathioprine, then methotrexate tablets and is now on 15mg of injections which has been changed to 20mg by his doctor just a few days ago.
 
I have been on the phone to the specialist this morning to ask about Infliximab (Remicade) this morning which is the next step for him. My son has grown to be steroid dependent and as soon as he's weaned off the steroids he is back in Hospital.
 
My son is so scared of surgery of ANY kind. I need to do research and reassure him as much as possible. He has missed so much of school and I am scared for his future. He is housebound and doesn't have friends for social events or after school. His disease has been much worse this year and he just can't shake it off this time.
 
My son is an A grade student and he has so much of his life ahead of him and it just seems a tragedy that this is happening to him. I get so frustrated and angry sometimes and tell my husband my fears and panic. My son is a very resiliant young man and has always faced pain with a smile. He is also very patient and doesn't let anything phase him so easily so I keep a happy face on for him. He doesn't realise the sheer terror I feel when he gets pain attacks and his whole face drains of color.
 
I am so scared and feel there is no future for my lovely son who deserves so much happiness and gets so much pain in this life. I want to take it all away from him and wish God would give me all the pain that he feels and I would happily trade places with him in a heart beat.
 
I have so much respect for people who have this disease and just wish science would come up with a cure asap to take all your pain away. You deserve much love and respect.
 
Rant over, sorry everyone.
 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/17/2010 5:19 AM (GMT -7)   
safe foods are very tricky, but here is what works for some of us

http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1669119
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 6/17/2010 5:49 AM (GMT -7)   

Surgery was the only option for me after trying some meds.  Surgery saved my life!  Only after surgery and getting the infection out of my body did meds start to help me and get me into remission.  Yes, surgery is scary - I was afraid every time.  My first surgery was when I was 23 and I had a 9 month old daughter and husband of just over a year at home.  I cannot tell you how afraid I was, but I also knew I was very very sick and I was useless to anyone.  I had to take pills to be able to get out of bed and get to the couch - I could hardly walk and I couldn't tend to my house or my child (thank God for my mom). 

Your son needs to realize if he is trying everything to get better surgery is one of those things.  It might not fix it right away and after being so sick getting better is a long journey - but he has to stick with it and keep his mind on the positive.  I would focus on what all I was going to do with my family once I felt good and could get out of the house.  I know you are a strong person or you would not have found Healing Well - this is a great place.  Your son needs you - I could not have made it without my parents while I sick.  Stay strong for him!


"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 6/17/2010 6:24 AM (GMT -7)   
unfortunately, it takes surgery sometimes to get rid of disease then treat it, that is how it went down for me. I was so sick, i felt so sorry for my parents because I knew it was out of their control, parents do not like when they can't help their children when they are sick, helpless feeling, believe me children know that trust me they do. I had major life threatening obstruction, so surgery was my only option, I have had a few since as well. I hav always been lucky with dr's they have done right by me, right know my 2 dr's are great, helping me with ssdi, they know that at my age and as long as I have had cd, i can't work in a normal work place, between anxiety over br issues and gas cramps and just cramping in general, your son is young and resilient, he'll fight back and he'll get the better hand, his dr's want to help, your government wants to help, not like the U.S. I lived in canada with socialized med. and it was good for us.

artist guy


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/17/2010 9:36 AM (GMT -7)   
I'm sorry but your son has been suffering for 8 long years and YOU, the one WITHOUT the disease, seem to be roadblock between your son and surgery and almost assured remission. I don't get it. I'll apologize in advance if this sounds unduly harsh but that's the way your post sounds and I feel like you're in need of a reality check and your son is in need of a surgical consultation.

Desperatohelp
New Member


Date Joined Jun 2010
Total Posts : 5
   Posted 6/17/2010 10:37 AM (GMT -7)   
 
 
Cleo35 wrote:
 
I'm sorry but your son has been suffering for 8 long years and YOU, the one WITHOUT the disease, seem to be roadblock between your son and surgery and almost assured remission. I don't get it. I'll apologize in advance if this sounds unduly harsh but that's the way your post sounds and I feel like you're in need of a reality check and your son is in need of a surgical consultation.
 
 
 
Greetings,
 
Maybe you are right. I think we have been seeking a cure where none exists. I have spent thousands of £ pounds on chinese herbal medicine and nothing has worked. The truth is that it hasn't yet come to the stage that he needs an operation, as I said before, he still has infliximab to try before they operate on him. I have just seen a lady who lives in the vacinity of our residence and she (aged 40ish) has had many problems with her ostomy. Which includes leakage and smell. That is what is sticking in my son's mind and we have done our utmost to rid his body of this disease.
 
I hadn't even heard of it prior to 2002 and still had no idea until I did more research in 2006 when I bought myself a PC. I KNOW what you say is true and when the time comes, I am sure we will have to have a talk with a surgical consultant. No one in my family has EVER had crohns nor has any experience or knowledge about this disease and the possible treatments. I just want to do the best for my son. He has had an MRI scan only a few weeks ago and is due for a colonoscopy too. It's just his pain is too hard to bear... 
 
 
Also a lot of what I have said is due to the fact that I was given hope by Chinese herbalists over the past few years that surgery should NEVER be considered as my son is too young to undergo a procedure like resection where his intestines are cut away and thrown. I have been desperately trying to find a cure by using alternative therapies as a compliment to the western medicine my son was on. I was told he should be healed not cut.
 
 
 

Desperatohelp
New Member


Date Joined Jun 2010
Total Posts : 5
   Posted 6/17/2010 10:43 AM (GMT -7)   
 
artist guy wrote:
 
unfortunately, it takes surgery sometimes to get rid of disease then treat it, that is how it went down for me. I was so sick, i felt so sorry for my parents because I knew it was out of their control, parents do not like when they can't help their children when they are sick, helpless feeling, believe me children know that trust me they do. I had major life threatening obstruction, so surgery was my only option, I have had a few since as well. I hav always been lucky with dr's they have done right by me, right know my 2 dr's are great, helping me with ssdi, they know that at my age and as long as I have had cd, i can't work in a normal work place, between anxiety over br issues and gas cramps and just cramping in general, your son is young and resilient, he'll fight back and he'll get the better hand, his dr's want to help, your government wants to help, not like the U.S. I lived in canada with socialized med. and it was good for us.
 
 
 
Hello,
 
I know the Dr's are great and very sympathetic too, but I know my child, I live with him and just wanted to do MORE than the doctors ever could. I see him in pain, crying and sobbing and I thought there was more options available out there but nothing worked.
 
Thanks for your honesty and I appreciate your input.
 
:)

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/17/2010 10:48 AM (GMT -7)   
I would like to know EXACTLY what meds your son has been on.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 6/17/2010 11:47 AM (GMT -7)   
 
I totally understand your feeling of being scared for the future for him, my son too was an A grader(wanted to go into medicine-lol) but things have taken a bit of a nose dive at the moment and now he is floundering. he has looked at other things too and the ones that appeal he can't do because of the Crohn's :( it is so hard cause it seems that they are 'knocked' every which way).
 
Please be wary of anyone that claims to 'cure' anything. Sometimes symptoms can be alleviated but not cured (in the true sense) I am looking at alternatives for my son(although he will stay on his meds) not to cure him but possibly alleviate some of his symptoms(I can live in hope) Don't pay out thousands you will gain little. Incidently my father in law was treated by chinese herbalists for a stomach complaint, after a couple of days mil called them back to him who took one look at him and called an ambulance(unfortunately he didn't survive  24 hrs) if only he had been admitted to hospital sooner!! Maybe you have had a lucky escape!
My son is fortunate that he is still attending school and his friends have been the best(so thankful for that) I don't know which country you are in but isn't there any associations/support groups for children of your son's age? They are about and organise 'social get togethers/activities for them.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/17/2010 12:20 PM (GMT -7)   
Desperate: the woman you met is not the norm for people w/ostomies in my opinion. I have had one since 2006 and had minimal problems - far less problems than before my surgery I can assure you. And surgery doesn't necessarily mean an ostomy - I had 2 previous resections done before it became necessary for the ostomy. One resection gave me 16 years of complete remission and the second one gave me 11 years of remission. I too am the only one in my immediate or extended family with the disease so I've been taking this journey pretty much on my own but with a lot of moral support from my family and friends. IMO, if your son is now virtually housebound he needs to have the surgery and then be on maintenance medication to keep him healthy. Both you and and he will be shocked and amazed at the difference in him after surgery - he AND you will have your lives back.

Note to Artist Guy: All of my surgeries have been in the US at the U of Chicago Hospitals. I don't know where you were getting such crappy care in the US but I doubt if it was at one of our premiere teaching hospitals.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/17/2010 3:24 PM (GMT -7)   
I have been living with the prospect of an imminent ostomy for years now and, like your son, used to be very scared and unhappy about it. One thing that really helped me was to visit the ostomy nurse at my local hospital and share my fears with her. She assured me that the tales you hear about faulty ostomies are NOT the norm, and told me many stories about patients she's had who have had years, if not decades, of happy and improved quality of life since their surgeries.

The kind people on HealingWell's ostomy forum also encouraged me to ask the nurse to give me a bag that I could wear for a few days, just so I could pretend that I'd had the surgery already. I learnt how to stick it onto myself, undressed and looked at myself in the mirror with the bag on... and, while it was a big change to my self-image, I realised that it was not as bad as I was imagining.

Another thing that has helped me is the realisation that my quality of life isn't too brilliant with my intestines intact and that I may well have a better chance of meeting people / getting a boyfriend / having a job / getting a life *with* an ostomy, than without.


Does your son have access to a correspondence school, so he can continue his studies? Another thing that might help him greatly is Lone Scouts. This is Scouting done by correspondence, and it will give him a peer group, even if by mail, and will also encourage him to try new things and develop his life skills.

Pen friends may also help him a lot. I can give you the name of a good pen friend organisation, if you're interested.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 6/17/2010 3:57 PM (GMT -7)   
Mum, There are still meds/treatments yet to try especially if Remicade has not been tried yet.
My Daughter has been on it for 7 years now. It is losing its effectiveness a bit, but still working good enough to where her GI does not want to move her on to Humira or Cimzia yet.

I GET how you are feeling about your Son's future. I used to feel the same a bit as I watched my Daughter struggle in College whereas pre-Crohns and pre-College never had to struggle one ioda in her studies. She graduated High School with high Honors and then the bottom sort of fell out being so sick in College. It took her 5 years to complete which is actually the norm these days even for those without health issues. She did get to enjoy her final year of College and flourished thanks to Remicade!

Despite it all, she survived, she toughed it out to the best of her ability and we were so proud. She even did a semester of Study Abroad in South America which was the highlight of her College years.
Yep, she even flared so very far from home (which freaked me out!), but it didn't stop her. Her hometown GI treated her long distance via email and made sure she had emergency Prednisone with her just in case so she wouldn't have to come home early. She still travels as much as possible and even made a return trip to South America not so long ago to visit her Host Family.

Crohn's did not stop her from getting a great job after College. Nor did it stop her from moving from her sleepy US hometown in Michigan to New York City to work and play. She is still there, most currently in Brooklyn and loving it. Crohn's does interrupt and slow down her life every now and then and probably always will, but it does not stop her from living life. It's a glitch in life she deals with.

I have wished everyday for 11 years to be able to take this away from my Daughter, but it is what it is and made my Daughter the incredible person she is today. She plans to get married and have a family one of these days and I can't wait to see that happen and be a part of it. LOL It might take some of the stress off of me having someone else to help worry about her unhealthly days and supporting her through them.

Have no fear, your Son's future will be Bright once the right treatment is found to get him feeling healthier!! There is NO perfect treatment, but better treatments, and more up and coming in the future. And if and when all else fails, surgery is always an option. So many that have had surgery wish they had done it sooner!
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