My first forum so bear with me

[Junkie]

Hi all my name is Shea and i've been living with Crohns for over 3 years now. My story started when i was out with some friends and suddenly had the urge to use the bathroom. Needless to say there was a lot of blood that night. I spent a week in te hospital and after a ct scan, multiple blood tests, an endoscopy, and a colonoscopy, i was diagnosed with Crohn's disease of the ileum. Since then i have been on a number of low intensity drugs starting with Pentasa. When the Pentasa didn't have any effect i went into a deep depression and lost almost 40 pounds. Finally with the support of my family i returned to the doctor and was prescribed prednisone to shock my system. After that i was prescribed a regimine of infliximab(remicade). The remicade seemed to be working for about a year until it slowly started to fail. I stayed on remicade until finally i was taking the maximum dose at the shortest period possible. Currently i am taking a newer drug called Cimzia which is in the form of two pre-filled syringes that i inject every 28 days. I have been using the cimzia for about 11 months now and am sad to say that it is starting to fail as well. My next options are to remove the imflamed tissue by means of surgery or to find another means of healing. My father and i have been doing some research on fasting for detoxification and at this point i am considering pretty much any other option besides surgery. If anyone could help me in that regard or has any suggestions it would be greatly appreciated.

 

[effdee]

Ask your doctor about Humira. It's similar to Remicade and Cimzia. I got about a year of remission out of Remicade and Humira before they stopped working for me. I feel the same way you do about surgery, so I think Humira is definitely worth considering. Best of luck.

 

[Guest]

hi there - just to put across the post-surgery point of view... Crohn's ruined many years of my life, through my teens and early 20's. i ended up having surgery and had all the affected bowel removed, and eventually after recovery, it was the best thing i could've done. no more Crohn's, no more pain, no more debilitation & being 'the poorly one'.

unfortunately i do now have a recurrance of Crohn's, but i've had 20 years free of the disease.

i completely support the idea of making sure that every medicinal option has been tried before contemplating surgery - but if that is way your surgeons feel you need to go, it can be a real chance of a new beginning.

 

[DustyKat]

Hi Junkie and :welcome:

I'm glad you found your way here 'cause this is a fab place with loads of support and info and you will be a very welcome addition.

I understand the desire and sense in wanting to exhaust all avenues before consenting to surgery. I can't offer any advice with this route as my daughter's treatment was completely the reverse. She was diagnosed on the operating table undergoing emergency surgery so she never had the opportunity try medication as a means of controlling her disease. I just want to reassure you that should surgery be the only option left open to you then, as ding has said, it may very well be a new beginning for you. Roo had her surgery 4 years ago and has been in remission since that time.

Good luck with the decisions you need to make and please keep us posted on how you are going. Browse the forums and if you have any questions don't hesitate to ask!


All the best and take care,
Dusty

 

[archie]

Hi Shea, i'm also new to this forum, but have been receiving great support. I too am faced with the discission of surgery and after speaking to many people it does seem to be the best option for returning to a normal and hopefully drug free life. Everyone is in support of having elective surgery when your fit and healthy and not leaving it until an emergency situation. I've recovered from a perforated bowel and it wasn't fun but at least i'm here to tell the story. It's a tough discission to make, but i'm now relieved that i've made it as I feel much more in control of the situation. I hope this is of some help and i'll will keep you informed of the surgery when it happens. Alice

 

[Dexky]

Wow Shea!! You were fine one day then a week-long hospital stay!! That was a rough intro to your disease. I can only offer encouragement and say that from those experiences I've read about on here, surgery has been a godsend for many!!! I hope whatever you and your docs decide, you find your best course and a looooonngg remission!! Good luck!!

 

[Crohn's 35]

:welcome: Shea.. you have found a place where we know exactly how you feel, your pain and your worries. Although fasting is ok to rest the bowels and staying on clear fluids, somtimes is needed but for a very short term. I too have my in the Ileum but have never bled, and that area is where all the nutrition is. I too had surgery because my initial diagnosis was so bad and I couldnt stay out of the hospital. Like Dingbat says surgery isnt the last resort any more, reading it in from our CCFC meetings, surgery can be a life saver for most. Laproscopic surgery is the least invasive. I too had Remicade and Humira in the past but now since Cimzia isnt here and my current Gi thinks it wouldnt work anyways, I am winging it and I know more sugery is down that road.

Hope you get relief soon, someone is always here to answer your questions. Glad you are here!

 

[Astra]

Hi Shea
and welcome (fab name)

Just to concur with the others, surgery will be one of my options soon enough, but not until I've exhausted all other avenues! But if it means pain free, then I'll do it, I had a hysterectomy 9 years ago cos I was in agony every month, best bloody decision I've ever made! I'm totally pain free in that department!
It's a toughie but I'm sure you'll make the right decision.
Glad you found us, lots of friends here for you
lotsa luv
Joan xxx

 

[Banhammer]

Hi shea! I am so sorry to hear about those failing for you, I hope you do not have to go through surgery and that you find another option! Best of wishes
-evan