I've beaten crohn's and am medication free!!!!

I had Crohn's disease when I was 18 years old and was treated with salazopyrine, lomotil and steroids. I had numerous flare ups but lived a normal life I fell pregnant with my first child whilst on medication when I was 24 yrs old and then my husband and I decided 2 years later we would try for our second child. I decided this time to try and reduce if not stop some of the medication which may have affects on my pregnancy my 2 nd child was born 18 years ago now and from that time I have been in remission, i am 46 now and I take no medication at all and live a normal life disease free. I have been through many stressful events during this time but have still been ok.
My father had Crohn's disease and unfortunately it is looking like my first child now has crohn's he is having an endoscopy and colonoscopy this week. He is absolutely petrified of these tests and of living a life with crohn's. he is constantly on the Internet finding out whatever he can, but unfortunately there is not much positive information. This is why I wanted to tell my story to give people hope.
As far as my son is concerned he still needs convincing but I'm hoping more that maybe seeing more positive comments will help him rather than all the negativity that you seem to see when researching the disease on the Internet.

You've beaten Crohn's? That sounds like the most positive message you could give your son.

agreed, theres still so much unknown about this disease, (which I think has various causes and subtypes), I hope your son is as lucky as you are, and I am the rest of us are too! may you long feel well

Hi Scamp and welcome to the forum!

I'm glad that you've been feeling so well. Do you continue with tests to make sure everything is doing ok inside (regular scopes etc to at least screen for colon cancer and as maintenance)? Unfortunately disease free is not possible as there is no cure for Crohn's disease but symptom free/remission is definitely possible.

One thing I must point out about the internet, most people don't come online to share their success story. Most are looking for help because they are having a lot of problems so unfortunately we don't get to hear most of the stories of people who went into remission nor how they did it which is really unfortunate. After being a member here for years I've seen members come and go yet most seem to leave because they are doing so well and that's wonderful. Go live your normal lives and be happy. We'll always be here if you need any help or support.

One section on the forum that your son may find encouraging are all the members who were kind enough to share their success stories: http://www.crohnsforum.com/forumdisplay.php?f=72 This section was opened in 2011 so still fairly new on the forum. We'll see plenty more stories added as time goes by and I encourage you to share yours there as well.

My sister (who also has Crohn's) came over to visit me and I had left this page up when I answered the door then forgot it was even open. She asked to use my computer and once she was done with her business she saw your story up and read it. This is what she told me, "Her story is similar to mine, minus the having kids." My sister stopped taking medication over a decade ago (I forget exactly how many years) and hasn't had very many symptoms since (there were a couple occasions over that time period where she passed some blood but I haven't heard of anything since, last time was over 5 years ago). I know that eventually she'd like to see a GI again to at least check on things but she's waiting until she has proper insurance to pay for it which still may be a long way away. Yet I'm sure there are many cases like her's and your own where people were diagnosed and did receive treatment yet stopped and never started back on meds because they felt fine. Making sure that everything is fine through tests is ideal though (to catch any issues early on before they become a bigger problem).

I hope your remission continues and that your son gets the help he needs if he is diagnosed with Crohn's (your post read as he's just now started testing so forgive me if I misunderstood) and goes into remission quickly. He's more than welcome to join the forum as well.

Hi
thanks for your reply. It is so nice that this forum does also show success stories because as I said my son has found very little hope from the information given on other sites. I do understand that although technically I will always have Crohn's disease, I do feel I have beaten it and I do have regular colonoscopies to check on everything. It is lovely to hear that your sister has a similar story to mine, it gives hope to others.
I just want others like my son to know there is hope because I like everyone else when diagnosed thought I had been given a life sentence and my life would never be the same. Life is brilliant and although my son is unwell and I did feel incredibly guilty and blame myself for the fact that he may have inherited it from me and my father before me. I am not frightened for him just positive that he when its confirmed he'll start treatment and eventually start to feel better. many people live very normal lives.
I hope this helps others like my son and I will definitely direct him to the success stories on the forum and he'll know that if he needs any help, advise or just to share his experiences he can use the forum.

So great to read your success story!!

It's certainly scary for anyone to face this diagnosis and the coming 'unknown' but, there are many success stories out there. As Jennifer said, forums tend to have members who are looking for answers and those who are doing well, seldom visit the forums. So, it can certainly give a one-sided view.

But, I believe my son, thus far, has also been a success story. He was diagnosed at 16, enteral nutrition was used to induce remission and to maintain for almost two years. At 18, his new (adult) GI wanted to eliminate all remaining inflammation and started him on remicade this past February. However, since inducing remission with enteral nutrition, he has gone back to his previous life! He continued to play hockey at a competitive level, got his driver's license, has been as socially active as he ever was, went on a grade trip to Dominican Republic and will be leaving for university in September.

He has had random symptoms but very infrequently and they passed quickly. But, even these have lessened after the first year.

Let your son know that, with the proper treatment, he can hopefully get right back to his usual lifestyle (or very close to it) and with luck, he can have as much success as you've had!!

Thank you for your message, I have given it to my son to read. He is
at university and has completed his second year and this year is supposed to be doing a year in industry - not a good start so far!
He is feeling so low at the moment and can not eat solids and is loosing weight rapidly. unfortunately my experiences with crohn's aren't making him think more positively because he feels I'm just saying things to make him feel better but stories from other seem to make a difference. Thanks!

I hope the scopes can provide some answers and he can get on with a treatment plan. If he is having a tough time with food, do look at information re enteral nutrition. It has a good success rate at inducing remission (although not so great at maintaining it), will provide your son with necessary nutrition, is anti-inflammatory and no side effects. While it's definitely tough to go without food (my son did six weeks of formula only), it is, at least, portable and would be something your son could fit in with school, work, etc. My son did it through school - he was allowed clear fluids as well, so would take broth to have at lunch with friends... while not ideal, it was doable and he responded quite well to the treatment.

Please also have a look through the parents section - there are a number of very knowledgeable and supportive parents in that subforum as well with older children/in university.

Oh, just a tip for the scopes... my son's first scopes were when he was diagnosed, so during a flare... the prep was absolutely horrible, painful, etc.!!!

He had scopes recently done again but, this time, I put him on a low residue diet for a few days, then two days before scope, had him drink only Boost shakes and he ate just a little bit of chicken, the day before was 'prep' day, so followed the instructions and he found the prep very easy... (I think with the low residue and 'shakes' only day, he was already half cleared out).

Just got back from the hospital and it has been confirmed my son has Crohn's disease. It seems to be mild and very treatable so although hes very unwell we are hoping for a good recovery. He actually seems happier finding out, I think maybe be feels now he can start to get better now they know what they are treating.
I have had it and my father had it and now my son just wondering how many other people have inherited crohn's through their family ?

I'm sorry to hear that he has Crohn's but many members have talked about how an actual diagnosis of something brings a lot of relief since they finally have a name to the problems they've been having and can now finally seek proper treatment as you mentioned. Has his GI talked about treatment options with him yet?

Here's an older thread where members mentioned if it was in their family or not: http://www.crohnsforum.com/showthread.php?t=42125 There are many on the forum who aren't aware of any family members who have been diagnosed with any form of IBD and then there are people (myself included) who do have other family members or at least distant relatives who have been diagnosed. This site mentions Crohn's in relation to genetics: http://ghr.nlm.nih.gov/condition/crohn-disease

Thanks it was an interesting read.
My son is being treated with budesonide steroids to be reviewed in 2 weeks, we'll see how they take effect.