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Hi everyone.

Briefly, I was diagnosed with Crohn's disease almost 10 years ago (time flys). I have a very severe case that has been somewhat difficult keeping under control. I have been on most every drug there is (all but one being completely useless) and Remicade has been the only one to help me in any way. I have been on Remicade since before it was introduced to the market which unfortunately means I have had more Remicade than anyone I have ever met. It is no longer working how it should, so I am staring a drug change in the face currently.

The reason I tell you all this is that I want you to know that I have a first hand understanding of most any physical experience of Crohn's that one can have. On top of that....especially given my age when I was going through the intial stages of this issue....I have experienced (and continue to experience) more than my share of the emotional/mental side-effects of this disease.

So, I am currently finishing my doctorate degree in Clinical Psychology here in Chicago and wanted to offer my help to anyone that is need. I am NOT offering to provide therapy per se but rather I am offering my time, understanding, and knowledge as well as any suggestions I suppose. Having the experiences that I have had, I understand the toll that this disease and its treatment can take on a person. If you just need someone to listen to you for a while or if you have specific questions that you would like to ask, dont hesitate.

Hope this helps someone in someway.

Take care.

Brandon

 Reply posted for bca131.

Brandon,

I hope you are doing better.  I have been where you are.  I am 50.  I am currently on Humira and was caught between the clinical trial and FDA approval for years.  I finally started taking the drug and was in remission for the 1st time in 10 plus years and lost my job last week.  Remission out the window in 24 hours.  Health insurance in place for several months, but don't know if I'll have funds for the hundreds it cost for the monthly co-payment.  My life has revolved around my disease for 35 years and it gets more and more difficult to rally each time I get knocked down.  Unless you walk in the shoes of someone who has to manage their daily lives as we do, there is no way to understand the crazy that goes on.  I long ago gave up worrying about side effects from medications, now the most pressing issue to pay for the medications.

Be well-Joy

 Reply posted for bca131.

Hey Brandon,

Having someone who knows first-hand how things really are would be great. I was diagnosed when I was 15, and have seen a therapist before. As I'm now approaching my ten year anniversary since being diagnosed, there are definitely a lot of things weighing on my mind. My family and friends are wonderful, but the self-loathing is wayyyy too much somedays. If you have time, I'd love to gain some perspective and talk a little.

shirleyp2002@hotmail.com

Again, IF you have time. Thanks :)

Kristi

 Reply posted for bca131.

Hi Brandon,

I am a parent of a 10 year old girl who was diagnosed with Crohns when she was 6. She had a tough first six months when she was hospitalized twice and finally put on Rhemicade which was successful. We then experienced 2 + years of excellent health however the past six months have had our share of minor flare ups.

While of course we are always concerned with the physical side of the condition, my daughter now shuts both of us out when she is having Crohns related health issues. She also recently started to have nightmares on her mortality. I asked our doctor if she could recommend some professional help with knowledge of the condition however she said they did not have anybody specific in mind. I would think the professional help providor would need to understand the condition to address these issues constructively. As when she is feeling well, there are no issues at all.  

Any advice or insight you might have would be greatly appreciated.

Best regards and I hope you are keeping well.

Seamus

 Reply posted for bca131.

Hey Brandon, not sure if you are getting overwhelmed with email requests but would like to chat. I was diagnosed with UC in 2007, and have had numerous flares. Currently experiencing one now; on prednisone, and feeling really down. My dr. wants to try Remicade, so I guess that will be the next step. Just wanted a sympathetic ear, since I don't get a lot of emotional support from my family. Hope to hear from you. Thanks.   jackie@crashmusicinc.com

 Reply posted for bca131.

Hi Brandon,

I would also love to speak with you when you have some time.  I'm on the SCD diet to control my UC which I was diagnosed with last year.  Currently, I'm off meds and seem to have my flares under control.  I continue to stay on the diet, as it has now become more of a lifestyle for me.

However, I've seemed to develop an unhealthy relationship with food that has lead to binging, compulsive tendendcies, etc. If you have some experience with this, I would love to chat.  My email is newman.sophie@gmail.com.

Thanks in advance, Sophie

 Reply posted for bca131.

Brandon,
Could you please email me?  i would like to talk to you.  i think i may have an eating disorder in the works.  keracooper82@yahoo.com
help.....

 Reply posted for kittiegirl.

Kittiegirl, yeah I don't want to make you feel bad or anything. If you want to make your husband feel better, you might want to stop worring/freaking out about his crohns. If I knew someone that was all worried about me having uc, I would tell them to shut up about it because its not their problem, it's mine. Because if someone else is worried about you, it only makes you doubt yourself.

 Reply posted for bca131.

My husband was diagnosed in October of 08 with Crohns and did not respond to Asacol so his GI put him on the prednisone to stop the flares. He became steroid dependent and is now on Humira with seemingly wonderful results. When we started this whole process she said he had mild to moderate crohns and that things didnt look bad at all. Now its January and he is on this medicine where he seemingly has to watch literally everything he does so he doesn't get sick. How did this happen? I am struggling as the wife feeling so helpless. He is just listening to his doctor (which he should) but I can't seem to calm down with this whole ordeal. He is going to have Crohns forever and he's already on a very powerful medicine. How do I stop obsessing and help him emotionally deal with the disease? Any thoughts??

 Reply posted for bca131.

Brandon, how do we deal with Rn's, Doc's that don't take our issues seriously?  Especially, pain.  My GI is great, but, my reg doc doesn't listen to my issues, just gives me my antidepressents & I'm there for maybe 5 minutes.  He pushes everything to my GI.  Thanks in advance.  L

 Reply posted for bca131.

Thank you for writing and offering your support.  I've had Crohn's for about thirty years and understand the difficulties that it brings into one's life.  I'd like to know if there is any data on how patients die and what is an average life span for adults.  Thank you, if you know what to look up I'm happy to do the research. 

 Reply posted for bca131.

Hello Brandon, Let me first say I am a mother of 3 and my middle one being the one who has Crohn's he was diagnosed in 2006 on his 5 birthday and it has been stressful for me because of being his mother I hate to see him in pain and suffering. We have tried just about all you can on a child not being happy with his current doc I switched him to a new one in which he will see on the 23rd of this month but in the mean time he is in alotta pain he can keep nothing he eats in and his stools went from soft form to completely diahreea in the past week. I am struggleing to keep myself together for my children bbecause when I see him in pain it hurts me and I feel so bad because all I can do is comfort him, I tell him if I could take the pain away I would but we know that is impossible. He cries to me asking will the stomach pains ever go away and will he be better when he gets older, I try my best to tell him the truth but really I don't know I am told different stories from the 2 GI doc'sa he has seen. I do alotta research on the web and have just about everything on Crohn's. So I am very educated. I am emotionally worn out though I probably worry more then I should I admit that but again I am a mother. I have great family support who listen to me and have always been there but I need someone else to talk to to understands first hand about the disease, seeing my son suffer hurts more when he can't eat I don't eat, when he is too tired to get up off the couch I sit by his side and don't get up, but what can I do when his pain hurts so bad he is in tears?? You can reach me via e-mail I sure could use somemore support.. (christinastbs@yahoo.com) Thanks..