Let Me Introduce Myself.....

[bhaddad103]

My Name Is Barbara, I reside in New York and I am a single mom of 2 wonderful Children..My Son is 19 and was Diagnosed with Crohn's Disease about a year and half ago.. We have tried just about every medication out there, but nothing worked...My son Had his first Resection surgery done in Sept. of 2011. After the surgery it was like he was a brand new person.. They took him off al medicine and visits to the doctor were every 3 months for a check up..We were so grateful for the surgery..we are into 8 Months after the surgery and My Son had A flare up that lasted close to 2 weeks. back and forth to the emergency room..Prednisone and perccocet and a 4th colonoscopy on Monday..We were fore warned about the surgery that its not used as a cure..The disease will eventually make its way back. Well that's my story..I guess I needed to vent a little bit..I'm missing those 8 months after the surgery..Life seemed so easy and carefree!! I love my kids to death and I hate to see my son in Pain!!! anyone else that suffers from this disease as well!!! God Bless...:rof:

 

[crohnsinct]

Hi Barbara! Welcome to the group. I am pretty new here and have no experience (knock wood) with surgeries. I am so sorry about the set back! Vent away...that is one of the things we are all here for. Sending lots of healing thoughts your way.

 

[Tesscorm]

Hi Barbara,

I'm so sorry to hear that your son is having such a difficult time (and, you too!) But, I'm glad you've found this forum. There are some wonderful members who are always happy to offer support and share their knowledge; and, of course, the parents who certainly all understand the many concerns and worries!

My son was diagnosed last May when he was 16 years old. My son's treatment has been Enteral Nutrition only. This is a nutritional formula that has a comparable success rate at inducing remission as steroids, provides all necessary nutrition, has anti-inflammatory and healing properties and NO side effects! It usually has an 'exclusive' period when diet is the formula alone for a number of weeks (six weeks for my son) and then regular foods are reintroduced. My son's maintenance has been half the dose, 5 nights per week. The formula can be ingested orally (shakes) or through an NG tube overnight (which my son has used). This is often the first treatment option in Canada and Europe but isn't as commonly used in the U.S. There's quite a bit of information re EN on this subforum as well as in the Treatment forum.

Another treatment that is not commonly used is Low Dose Naltrexone (LDN). This drug is also not commonly prescribed as it was initially developed for treatment of other illnesses, however, studies have been made and there has been notable successes in its use for Crohns and other auto-immune diseases. There are very, very few side effects. There are a number of members who have found success using LDN. Again, there is much info re LDN in this forum as well as in the treatment forum.

If you haven't yet, have a look through the Treatment forum - you'll find lots of info there!

One more There are also, at least, two members here who have undergone Stem Cell Transplants - their postings will provide you with lots of information (not sure where you'll find them - using the search feature for Stem Cell will get you there...)

It's horrible to see your child in pain and not be able to alleviate it right away! As my son is close in age to yours, I can well imagine how frustrated he must also be feeling. I hope you are able to find a treatment and some relief for him quickly! :ghug:

Good luck!

 

[DustyKat]

Hi bhaddad and :welcome:

I am so sorry to hear about your boy...:hug:

Tess has given you loads of fab advice...:thumleft:...so I have nothing to add there.

Just curious though, was maintenance medication never discussed with you or your son as a way of perhaps keeping the disease at bay post operatively?

Dusty. xxx

 

[kimmidwife]

Welcome Barbara,
So sorry you had to find us but glad you did. Like Dustykat said your doctor did not mention maintenance meds? It seems to usually be the standard of care. Where in New York are you?

 

[bhaddad103]

Hello..
Remicade and Humira were discussed but the doctors felt that it would be harmful to his immune system. That is why we opted for the Surgery...He was taking Prednisone but the Doctor said he didn't want to give him too much of it.. they put him on Entecort, but that soon stopped working for him..After the surgery they took him off everything..Just recently because of the flare up they put him on prednisone again as well as perccocet. :ybatty: Doctors are really driving me nuts with all these medications..but yet nothing works!!! Thank you all for your kind support and Advice...I am so Happy I joined..And I live in Hyde Park, NY..

 

[Tesscorm]

Hi Barbara,

There are other medications that it doesn't seem your GI has considered but, perhaps, there's a reason (other than what I've primarily learned here, I don't have any experience with the meds). Other treatment/drug options are the 5-ASAs, methotrexate, Imuran/6mp/Azathioprine as well as the biologics you mentioned (remicade, humira) and the EN and LDN. There are many others here who can better offer you advice re the medications (ie what works best where and when) but it doesn't seem that you have been made aware of all the options???

In addition to the Treatment forum, also have a look through the Forum Wiki - you'll find lots of info there re treatments, tests, etc.

 

[DustyKat]

Hey Barbara,

What type of doctor is advising about the medications? Is it a gastroenterologist, a surgeon, paediatrician or a GP?

It seems bizarre that on the one hand they would forewarn you that surgery, in the case of Crohn's, is not a cure, which it isn't but on the other hand leave you high and dry post operatively. I know that some doctors do take this path and surgeons often think their handiwork is a cure or close to it. :wink:

To be fair there are such widely varying opinions on the treatment for Crohn's whether it be at the outset, after surgery or even when experiencing your umpteenth flare. My own personal may be flawed, probably is :lol:, but I view Crohn's like any other chronic illness. Take Asthma for example, it can in most cases be controlled by medication, so you take what is termed prophylactic medication, the idea being that you keep the disease in check therefore avoiding acute episodes. This is how I view my children's maintenance medication...it keeps the lurking monster at bay.

Crohn's ebbs and flows as can individuals outlook on it. Some people stay on medication for very lengthy periods whereas others choose to go off them after a period of time and they may make other changes to their life, like diet and supplementation if they haven't already done so.

In your son's case his disease sounds as if it would be rated as severe so to me maintenance medication should have been a natural progression for at least X amount of time but that was a choice not afforded to you. Perhaps as an immediate treatment to get you away from the thoughts of further medication at this point, and who knows it may give you some breathing space, is the Enternal Nutrition that Tess has spoken of. It will at least rest his bowel and provide him with adequate nutrition.

Dusty. xxx

 

[izzi'smom]

^yeah, that!
Sorry that you had to find your way here, but WELCOME! and hoping your sons flare settles soon.

 

[Sascot]

Sorry to hear your son is flaring again. It is nice when they are living carefree/painfree! Unfortunately mine only lasted 3 months before a flare but we did enjoy it. Now he is on Aza - week 3 and hoping for the best! Good luck, hope you find a medication you are happy with and that works

 

[my little penguin]

:ghug: hope you get to the bottom of the issues soon and find something that helps him.