Can't afford anymore mistakes

Well, where do I begin.......my son was diagnosed with Crohn's at age 9 and is now 18 and just had his first major surgery, a right hemicolectomy. He started having bowel obstructions in July 2012 after a colonoscopy discovered a lot of scar tissue. His GI started him on Humira right away but unfortunately there was too much damage and surgery was the only option. My son's previous GI doctor left his practice with no warning so the family Dr said he was more than capable of monitoring this disease and convinced us that we didn't need a specialist......this was the first mistake. A colonoscopy was never done, my son's blood work was checked (but not often enough from what I have now discovered) and his medication was never changed since he was 9, we found out through our new GI that the previous meds (Pentasa and Aza) had probably stopped working at least 2 yrs ago which landed my son in the operating room Oct 30/12. Chris didn't really get sick, the odd fever and slept a little more but......the second mistake was me not taking this disease as serious as it is or gathering information about it to educate us Thank God I have found this site and can now become more educated and learn how to help him deal with this awful disease and hopefully get him to join as he is becoming quite depressed and feels very alone, he doesn't know anyone that has Crohn's and refers to himself as "not normal". He is very active always played hockey, baseball, took karate and now is recovering from surgery so becoming very depressed being laid up at home, breaks a mother's heart to have to watch her child suffer. Anyways, thats our story and it's been a very rough few months but hope that things get better now that the damaged tissue has been removed. I've read both good and bad stories about surgery after having a right hemicolectomy and can only pray not only for my son but I also pray for all the other victims of this vicious and unforgiving disease.

I'm so sorry to hear about your son and your username says the rest. My heart goes out to you, your son, and entire family.

*hugs*

What kind of surgery was done the first time around?

Is your son's disease Crohn's Colitis, meaning it is confined to the large intestine? Or does he have small intestine involvement as well. How is your son feeling now on a physical level? And do they plan to have him on any maintenance medication?

All my best to you.

stressed mom,
so sorry to hear about your son and what you have both been through. I found this site a couple months ago. My daughter 14, was diagnosed with Crohns this last Jan.

It is a tough disease, but your son is blessed to have such a caring mother.

Dont blame yourself, your doctor is to blame for not following through with referring you to a specialist. We all wanted to believe this disease was easy to treat and if a doctor told me we could monitor it ourselves, I would have believed it.

Your son is not alone and can find comfort, strength and the knowledge he needs through this site too.

As a mom, it is good to have a place to go and ask questions and find caring people who know what you are going through.

Thank you David it means alot to know there is support here for us. Honestly, I haven't heard the term Crohn's Colitis at all until you mentioned it so again I'm learning and thank you. They removed 10cm of colon and 10 cm of small bowel, he will be starting back on Humira this Wednesday if all goes well at the follow up appointment tomorrow with the surgeon. He is doing very well physically from what I can see, surgery was done laparoscopic and incisions look almost healed completely. Again I'm embarrassed to admit that I don't know as much as I should about this disease as he has never had any real issues until this past year so I'm learning as much as I can now and greatly appreciate and knowledge you can share. This is my first online post EVER I don't even have facebook so big step for me!!

Thank you Julie, I too found this site a couple months ago and have been reading stories everyday since but wasn't sure whether or not I should join. Some people are struggling so much worse than we are and my eyes were watering just reading their stories this disease has no mercy. Your so right this is a great site full of caring people like yourself thank you and I wish only the best for your daughter.

Hi Stressed Mom and :welcome:

I'm so very sorry to hear about your lad, bless him...:hug:

Don't be hard on yourself Mum...:ghug:...this is such a difficult and unpredictable disease and if there is one thing I particularly hate about it is how it makes you realise just what an awful kick in the guts 20/20 vision in hindsight can be. Ugh!

Both of my children have had right hemicolectomies with my son's being closest in amount to your son's. They both had open surgery and my son's was planned. He was in quite poor condition leading up to it but he had an uneventful post op period and I found the beginning of week 4 post op seemed to be the turn around for him. It was at this point that he was able to move freely again and shades of his old self started to return. Within the next two weeks he was driving distances again and returned to soccer training.

They both have had very positive outcomes from surgery. My daughter had surgery six years ago and my 18 months ago and both have been solidly in remission since that time. They are both attending university full-time, have part time jobs and are living life to the full.

I hope your boy is soon feeling on top of things again. Hopefully he will soon be out of the house again and that will have him looking at things more positively. I do understand his disappointment and frustration though and your heartbreak hun.

Good luck and welcome aboard! And please check out the Parent's Forum here.

Dusty. xxx

Thank you very much Dusty for sharing your story about your children, I'm so glad they are doing so well now and hope only the best for them. My son had a few complications after his surgery but I'm hoping and praying the worst is over I was so mentally, emotionally and physically drained I can't even imagine how hard it was on him as I'm sure you can relate having to also watch your children go through that. I'm going to encourage him to join this site just having people like you that know what we are going through and the support here is amazing I will be checking out the Parent's Forum for sure and thank you again for such a warm welcome :mademyday:

Michelle

Thanks for your kind words Michelle.

I too hope your son is over the worst of things and he soon finds lasting peace and relief.

Please just know that you and your lad are not alone. There is always someone here 24/7, the true advantage of a world wide forum! :lol:. We have other parent's and members here from Canada, Tesscorm is one and she has a boy close to your son's in age that also plays hockey.

I hope you stay around Michelle as we would love to get to know you better and if you have any questions please don't hesitate to ask.

Dusty. xxx

PS Now that I have named Tess she will be tagged to this post and so see your thread.

I just wanted to welcome you to the forum! I hope your son continues to heal well from the surgery.

Hi Michelle,

First off!! Please don't blame yourself!!!... there's no reason you should have done anything differently, you followed your doctor's instructions and your son showed no symptoms! The odd fever and some fatigue could have been caused by anything! Why would you have done anything different!?!?!? Crohns can be such a silent disease for some, this is what scares me as well... my son also shows few symptoms but I worry about what is happening inside! But, you've come to a wonderful place here - there are lots of very well informed members and parents! You find lots of information, advice and support!

As Dusty said, my son, Stephen, is the same age and it breaks my heart to hear what you, your son and your family have struggled through! I hope that the worst is over and he can move on with his recovery! I can imagine your son's frustration at having to get through the recovery of the surgery... hopefully he will be able to return to some of his activities soon. No doubt, not being able to play hockey would also be one of the toughest aspects for my son to get through! I'm not sure what activities he can start with but, perhaps, some light sports-related activities to build up his energy, muscle, etc. may help him feel he is working towards getting back to his regular activities - perhaps his GI can suggest what activities would be 'safe' to begin. While we have no experience with surgery, I have read of lots of who have had much success following surgery!

Do not hesitate to ask question or ask for support... Please also have a look through the Parents of Kids with IBD - as parents, we all understand your concerns! :ghug:

Michelle, Welcome to the Forum. Don't blame yourself for not learning enough about this terrible disease. Most people have no clue what is all involved with it.

I was diagnosed with CD 26 yrs ago when there wasn't as much as far as treatments as there is today. Until 4-5 yrs ago I knew nothing about all the new treatments out there. I was treated with steriods,IV's and liquid and soft diets. When we go to our Drs we trust that they know what's best for us when treating differant Diseases. When my original GI retired I was lucky to find a young GI who was open and knowledgable of all the new treatments available. The 1st time I went for a consultation she questioned me about the "surgery" I had in 2004 that my old GI had in my files. I had never had surgery for CD in my life. I loved my old GI because he had pretty much saved my life when I was first diagnosed. But now I realize that I missed out on so much of the new treatments out there.

When I joined this forum I found out about so many new alternatives outside the medical field's way of thinking. My wife actually started looking into things like Mona-Vie for easing my crampy feelings and helping with the consipation. There is so much knowledge here for you. I am still learning something new every day now.

Good luck with your son and please don't beat yourself up for not learning more. It doesn't make you a bad mom, it makes you a mom who admits that she has a lot to learn just like the majority of us.

Thank you all, it's very heart warming to receive such strong support and understanding.

Dusty - Thank you for introducing me to Tesscorm her words are very comforting, and again thank you for welcoming me I look forward to making strong connections here and getting to know you all.

Clash - Thank you very much it means a alot.

Tesscorm - Hi and thank you for helping me feel better. I really do understand what your saying but as a mom I just feel that I have let him down to some degree and didn't protect him by learning more when he was first diagnosed. I know that it's not my fault that his disease got this bad, I have lost all faith in his family doctor, but I could have also done more research. I can't change that past but I am so grateful for this site and all of you :hug: I will make sure going forward I am armed with as much knowledge as I can find about this horrible disease and educate him and I both as much as possible. I hope and pray your son never has to experience surgery and again thank you for helping me feel much better!!

Pirate - Thank you so much and your so right!! I had no idea what this disease is capable of and scares the heck out of me now after reading so many stories here. I sure am going to learn as much as I can and I have even heard of Mona-Vie here in Strathroy but was very nervous to let my son try it. Is it showing benefits for you? I am just starting to look into alternatives for medications and maybe will take a more serious look into the Mona-Vie now too thank you for mentioning it . You are all so kind, caring, supportive and understanding I thank you from the bottom of my heart we have felt so alone for these past few months just to have this support now is priceless!!!!!!!

Michelle, it really helps me for the minor flares, plus they have a power drink that is all natural that works good when my energy level is low. And it tastes pretty good. Plus it helps with the absorbtion of the nutrietion.

Michelle, Welcome to the forum sorry you and your son are going through so much. I hope he feels better soon and is back to playing hockey.
You've come to the right place to learn things, every time I've had a question there has been someone that has experienced and I've learned things just by reading other peoples posts

Pirate, that's great I'm glad you found something that helps you even with the minor flares is a small victory. I will be looking into this again very soon the lady that sells it told me it was good for CD but I was skeptical. Knowing it has been a benefit to you makes me feel much more confident in the product :smile:

Thank you Jacqui, I have also had alot of my questions answered just by reading other posts. I went from knowing very little about CD to a much better understanding of it just from everyone's stories and posts here it's fantastic to have such a dedicated support group right here at the click of a button and knowing your never alone in this battle.

Hey Michelle,

I'm sure we can all go back and, with 20/20 hindsight, say 'I should've, I could've, etc.'. :ybatty: My son had backaches for months and months prior to being diagnosed, we thought it was due to a growth spurt, slouching, a prior injury and the constant hits/twists from hockey, his GP suggested that he take an ibuprofen before games and practices to try to head off the inflammation and then more if/when necessary. As he played on two teams, he was on the ice most days... I'm sure he was taking, at least, 4-5 ibuprofens per week (sometimes more). Ibuprofen is NOT good if you have IBD!! To this day, I wonder if the constant use of the ibuprofen triggered the crohns. Why did I just go along with a 16 year old taking ibuprofens daily for months??? How did that seem 'normal' or 'okay' at the time? When I asked his GI, his GI actually thought his backache/inflammation may have been an early symptom of the crohns, which means the crohns had already been 'triggered' but... who knows? I certainly didn't make it better by having him pop pills daily!! :ymad:

All we can do is the best we can do! And I have no doubt that you have done all that you believed was in your son's best interest! :ghug: By the way, we have switched Stephen's GP... not necessarily blaming her but, some faith in her was lost and logistical (distance, etc.) just led us to move to a new GP.

But, having said all this, learning all you can, can only help you and your son. Fairly soon he will be making his own decision re his crohns so, as you said, it will be important to educate him as well.

There is also a teens forum here, it may be something he's interested in. But, maybe not... while my son is completely open and accepting of his crohns, it's also not something he wants to spend time thinking about... hockey, music and girls are his focus! :lol: His pediatric IBD clinic had lots of activities to bring together kids with IBD including skates at Air Canada Centre! but he had no interest. So, while I do try to share what I learn, I take my cue from him... I don't force him to talk/think about it except when it relates to symptoms, treatment options, benefits/risks, etc.

Is your son still playing hockey (aside from his current recovery time)? Stephen has finished in the youth league and joined a mens league this year (whew!!! no more hitting! :ywow. Who knows, our sons may have played against one another! Over the years, we played in tournaments in London, Sarnia, Fort Erie and some others (too many to remember! :lol

:ghug:

Thank you for sharing your story with me it really makes me feel a lot better. I too was giving my son tons of motrin and tylenol for fevers for YEARS as he would constantly get extremely high fevers and doctors would have no clue why because he was never "sick". He was presenting symptoms for 7 years before finally being diagnosed with Crohn's. They even took out his tonsils thinking they were the cause.......so frustrating but I'm at least relieved that we are on the right track now with a terrific specialist and all the support from here :ghug:

My son isn't playing hockey this year, he played goalie and taking pucks to the gut finally convinced him to take some time off from the contact sports lol. Chris played for Strathroy Minor Hockey and Del-Ko-Brydge so maybe they did play against eachother.

Also, Chris is the same about his disease meaning he doesn't like to open up much about it to other people. He has always referred to it as "an embarrassing disease" but I did inform him of this forum and that I joined and found tons of support and information but won't push him to join just hopeful that he will at some point.

Welcome to the site, sorry to hear about your son.

I just thought I'd pop in and say I know how your son is feeling. For a teenage lad it is an embarrassing thing to have really. Heck I'm still embarrassed of it at 20. Helping him meet people with the disease would probably really help him, especially if they're living a fairly normal life. I'm still to meet anyone with crohns myself, outside of the hospital anyway, and I've had it for 9 years. So any sort of visit to a support meeting would probably help him a bunch.

You've probably already read a lot of advice here, but I'd also make sure that he does have some sort of goal to aim for with his life. Goal setting is pretty important for everyone but when you're forced to stop doing things you loved before (like him having to stop hockey) you can just become depressed. Find him some other activity or hobby that can occupy him even when he is ill.

I don't know how much of this is useful to you but I hope it helped a little! Welcome to the forum, you'll definitely find good information here.

Don't feel embarresed at all StressedMom, you sound a lot like my dear mother, who is also stressed a lot of the time

I've only recently started looking into Crohns myself as it was never really explained to me that Crohns would need lifelong attention, glad I found out when I did. Anyone would be proud to have a mother who commits to searching the endless information on the internet just for their wellbeing, don't think your son hasn't noticed.

I wish you all the best, and congratulations for finding possibly the best resource on the internet for anyone suffering or related to a sufferer.

Price, Thank you it did help and I will definately try to find him another hobby he is able to do while he's recovering. He has become a little depressed but like you he doesn't know anyone else that has CD so makes him feel "different" and alone which is why I encourage him to come here and at least read through some of the posts in hope he will join too.

He was supposed to go off to college in September, he has wanted to be a police officer since he was 6, but due to surgery had to put it off for a year but that is still his main goal I just pray his health permits it.

Thank you again for your suggestions and for welcoming me

Thank you Jordan, it's very hard (if not impossible) for us mom's not to worry.

I felt the exact same way you did, I had no idea that this disease was so high maintenance my son's doctor made it seem like you just take these pills and carry on how WRONG he was!! We were not prepared or aware of the issues we have had to face this year and now doing my research and finding out so much that CD is capable of that I never knew.

And you are very right......this site is amazing and I'm positive it is the best resource for information and support

Just wanted to offer hugs.
You did the best you could with the information you had at the time.