Crohn's Disease Forum » Your Story » Feeling pretty great for 25 years!

08-25-2015, 08:07 PM   #1
Join Date: Aug 2015
Location: Kittery, Maine
Feeling pretty great for 25 years!

Hello to all of you. I was diagnosed in 1977 at 16 years old. (really rare back then, sad that it is so common now.) I was 5'6" and weighed just 64 lbs. I could not eat many things, popcorn would just about kill me, blueberries, juices, ice cream, pizza, many things caused so much pain.
I am 53 now (145 lbs, same height, trying to lose a few pounds!!) and mostly fabulous most of the time. I celebrate my own 25 years of being healthy with the member who posted: "In remission almost 30 years". There are tremendous benefits from having a good (understanding) doctor and especially AWESOME benefiits of hearing from survivors and thrivers at crucial moments. (There was no one who knew about or had the disease back then, a blessing in disguise as I had none of the information that is now readily available.)
Back then: I had done a long course of Prednisone (I loved it!!so much energy, felt fantastic for the first time in ten years and gained a constant 2 lbs a week til I was 120 lbs.) and they had me on a sulpher drug as a maintenance med. I still suffered with many days spent within a few feet of a bathroom. But I was much better than I had been. A few years later I was 28, married and pregnant ... I took myself off Sulfasalazine because I was worried about injury to my baby.
The most important and beneficial moment of my life was realizing that I didn't think I could be a good mother IF I was always in the bathroom! SO: I DECIDED then and there that I didn't HAVE Crohn's disease any more. I didn't live in a fantasy land.... I still had "issues" (and significant scarring within my physical body). Using words/thoughts I just put my experience in my history, rather than my present tense. I had never heard of a self help book, I had never heard of the concept of manifestation... the illness just needed to be put in the past tense. My path from there was a slow climb to success... I can eat most things now (and for the past 15 years) and usually feel great. I feel like my stress from life tends to land in my gut, so I do my best to manage it... knowing that I CAN calm myself, I can heal myself.
I became a massage therapist and a Reiki master energy therapist and I do this peaceful work to this day (15 years at this lovely career). I hope that all of you find your answers, it is a disease that is unique to each body. I don't imagine that I have THE answer for everyone. There is a deep and very real connection to your mind... your emotions, your whole being. I have a daughter (22) who is suffering now with a severe flare. Unfortunately, as I have accompanied her to many Dr. appointments over the years, I have heard what the docs have to say and even today have NO suggestions for diet, Reiki, acupuncture, yoga, mindful breathing, massage therapy or talk therapy. So sad to witness the establishment missing so many opportunities.
When my daughter was 12 and had "pre-Crohn's lesions" the meds didn't work so we tried acupuncture and had miraculous results. Then after 5 year remission she left for college and now, after 5 years of stress and poor diet (and no acupuncture!!) her entire being is in distress with ulcerative colitis and Crohn's. I think it is hard for her to hear me because I am her mother. I guess that because I look and feel pretty healthy it is hard for those in flare-up to imagine that I have any concept of the pain, agony and social isolation of Crohn's... but I know these things intimately. There is a depression (and lingering potential for depression even after many years of feelign good) that comes from hopelessness and chronic pain.
Try acupuncture... do meditiation, keep a journal, see a therapist...
get a massage regularly!, get Reiki treatments, trade Reiki sessions!! Find someone who helps guide you with breathing and centering while in the session. (see: Self Regulation Therapy). I have lots of ideas and have had awesome results. I definitely have times when life stress either gives me diarrhea or terrible constipation, but I do my best to stay aware of what I am thinking and feeling, as well as what I am eating and drinking. LOVE and positive energy to everyone who is suffering! If I can help please let me know!
08-25-2015, 09:44 PM   #2
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Join Date: Nov 2012
Location: El paso, Texas

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Thanks for sharing your Story joyful, I am glad you are feeling great and I do hope your daughter feels better soon.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-26-2015, 07:57 PM   #3
Join Date: Aug 2015
Location: Kittery, Maine
Thanks for sharing your Story joyful, I am glad you are feeling great and I do hope your daughter feels better soon.
Thank you! My daughter had success with Remicade for a while in college. She would like to avoid going back on it due to the truly unknown long-term effects but she may need to. I have directed her here to the Forum to be able to connect with this loving, supportive and often humorous community. Good luck to you and your children too!
08-26-2015, 10:02 PM   #4
Senior Member
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Join Date: Jul 2015
Location: Texas

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So nice to read your success story. I truly believe in controlling the mind and it actually helped a bit for my husband. A Reiki professional from India would have Reiki sessions with him on Skype often and try healing. It helped him a lot in addition to medication. She could just see him and say "You are severely dehydrated" or "There is a lot of heat in your system". And few days back she spoke to him on phone and said "There is a lot of positive energy in you now. Happy you are feeling better". He is now on Remicade and as though been born again. Hope your daughter feels better soon
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg

Crohn's Disease Forum » Your Story » Feeling pretty great for 25 years!
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