• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Our Story - my girl's story...

Molly was diagnosed at 14 with Lyme Disease and put on an enormous amount of antibiotics 1500mg amoxicillin/day for SIX (6) weeks! She didn't tell me that it was causing diarrhea and for months after through summer of 2006. In December 2006 Molly called me terrified from a friend's house that she pooped and the bowl was full of blood! I picked her up and called the doc. They said to bring her to the ER. Christmas was just days away. Well she was admitted and borderline for a blood transfusion because this had been going on longer than she told me - at age 14 and just starting high school it wasn't something I guess she felt easy to tell me. She told her docs she had been having diarrhea since previous MAY 2006 - almost 8 months! I had been bringing her for follow up visits for the Lyme Disease and she was fine but she wasn't looking well ... losing weight - all concerns of mine but the doc said she was fine. She was NOT FINE. A colonoscopy on December 25th 2006 dx'd Crohn's for her...

We refused to believe it - had no idea what this word Crohn's even was! Where did this come from and why? No on in our family had it ... we started the natural route and everyone was in agreement that the antibiotics induced Crohn's... we didn't know that anytime on an antibiotic one should be taking heavy doses of probiotics and then for 2 months AFTER you finish the antibiotics as well. Apparently the iron her doc gave her for anemia caused the bleeding. Molly's colon doesn't tolerate oral iron so she gets iron infusions (through IV) and this helps tremendously.

Molly was put on prednisone and discharged on Christmas Eve. She felt ok - no pain but scared. Little did we know what was ahead. She blew up and got so puffy from the prednisone - mind you this is her first year of high school - and she's a beautiful girl so the prednisone distorted her face terribly and she was made fun of and couldn't explain to anyone why she was puffy because it had to do with pooping:( Couldn't say ASTHMA or something people were aware of. Anyway - she was put on Asacol and lost at least 50% of her hair - we got her extensions to thicken it up - tried to wean off prednisone 100x but it took a year and a half to get her off of it without flaring back up. In October 2007 Molly was in the worst flare and they gave us a choice....Remicade or lose the colon! We didn't want her to have the medicine with all the side effects that could happen but gave in to save her colon. She failed the Remicade - it worked for 2 weeks then stopped working. Tried again and it lasted 2 weeks. It's supposed to last 4-8 weeks depending on the person but she obviously wasn't doing well. Back to 60 mgs of prednisone and now over a year later she had bone loss from the prednisone on a scan.

Molly had some food allergy/sensitivity testing done and it showed she could not eat eggs, dairy, most veggies or chicken - nothing with vinegar. No sugar. We started acupuncture and that seemed to help but the NAET acupuncture for food allergies didn't help as much as we hoped. She still had bleeding and flares if she ate anything on the 'no-no list'... no cheating ever. If she cheated - she bled.

So finally a new doc in NYC put her on Humira injectios bi-weekly then went to weekly. First time in 2 years she was in remission - YAY! But then a year later she had a flare and colonoscopy and the doc said time to discuss a permanent ostomy for my little girl. She missed out on all her teen years... managed to be a cheerleader for 2 of her high school years and would get out of the hospital and compete and let them throw her in the air:) but she was never 'like the other girls'... and oh so pretty. I felt so bad as her mom that I couldn't kiss her boo boo and make it go away try as I did - doctor to doctor - racking up 14,000 dollars in medical bills that insurance DIDN'T cover... oy this was rough.

So here we are - she's not doing well on Humira as she is still having pain and diarrhea along with symptoms of MS which is a side effect of Humira - central nervous system disorders. UGH! Her last dose of Humira was Oct 2nd 2010. Today is October 27th 2010 and after her class (she's in local community college now:)) we will be going for more tests for MS but thankfully the neurologist is hopeful the blindness she experienced 2 weeks ago and migraines were all due to hormones and nothing more. The MRI shows some things of concern but not definitive enough to say MS so we are hopeful. She's a trooper and a stubborn one at that! But being stubborn with this disease is important - she won't let it stop her from having a life and boyfriends and such. She just has to eat a lot of turkey lol....all she can have mostly and bagels and green beans and even beef doesn't bother her but chicken would put her in the hospital. Every 'body' is so different.

I am hopeful and trying to keep her going but now she's trying to be more independent and I feel so lost. I want to help her... I made an appt. with a doc here on Long Island who prescribes LDN (low dose naltrexone) and MANY fellow Crohnies that I've met are on it and there are no side effects - they are living normal lives and the inflammation is gone in their colons so we go Friday the 29th this week and hope to get that medication to keep her protected.

I hope this all makes sense. I'm so tired and frustrated for her. I love her to pieces and keep asking God to give it to me and take away from her! Since off Humira she's had NO CROHN'S SYMPTOMS for first time in years... which we are all asking WHY? I did read Humira can cause gastrointestinal upset - great! NO wonder it didn't work as well as we thought. Oh she also takes medicinal strength probiotics 2x a day - LactoViden and BifoViden and after 3 months of taking religiously I think her 'flora' is more stable now. Last blood work was amazing and showed remission so keeping fingers and toes crossed and praying a lot.

Hoping LDN is a good alternative since we've exhausted most medicines at this point and an ostomy is not an option for her. She says she'd rather die then live with a bag - she's only 18. I can understand her feeling that way. Let's hope it never comes to that decision ever again.

My hope is stem cells will be the answer and soon:)

Good luck and God bless you all - parents, caretakers and anyone with this awful disease. I know way too many people suffering from Crohn's - we must make the public more aware of this disease and we must find a cure!!!
 
I understand what your daughter is going through. I was diagnosed at 19 after being married for just 6 months. My husband (yeah, we are still married, 26 years) blames the birth control pill. Sounds kind of similar, huh? I also took a large dose of antibotic for Lymes (I am orginally from the east coast) at 18. HUMMMMMMMMM. Molly can and will make it. You are right, stubborn is a good thing with Crohn's. I attended college, obtained my master's and worked 3/4 to full time through both. I now work around 30 hours a week in a highly rewarding but stressful job. It can be done. Keep the faith and don't let Molly get down and out!

Michele
 
I bet it was the antibiotics for you as well and I did hear that the birth control pill can make candida grow (which all crohnies tend to have overgrowth of) so you had a double whammy. She is strong and tough and I'm sure hoping she keeps on fighting. She works as well at a part-time job while going to school full-time initially to become a nurse but has changed mind and not sure what she wants to do. STRESS of school was worrying her and giving her ocular migraines which is why they thought she has MS so she dropped Anatomy and Physiology for this semester to lighten her load. I just want her to be well. And be able to EAT! I don't even know what to cook anymore. She's good right now and I thank God for every moment she feels well:) Stay well Michele...
~Janis
 

Astra

Moderator
Hi Janis & Molly
and welcome

Poor Molly, that is a heartbreaking story Janis! She's been thro a lot for such a young girl, hope you find comfort here with us!
When you feel up to it, have a mooch around our sections on diet, you might find something that will relieve Molly.
Glad you found us, lots of friends here for you, and ask Molly to join too, lots of young uns on like her, all paddling in the same boat!
lotsa luv
Joan xxx
 
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Thank you so much Joan:) It has been a long road as you know... thx for the support! I'm here to help others too:)

Hope today is a good day / night for you!
~Janis~
 
Hi Janis - My heart goes out to Molly - having to go thru so much so young. At 20 the drs wanted to give me a permanent ostomy and I reacted just like Molly. At 37 I had a j-pouch (had UC at the time, not Crohn's) and I still have it - many infections and inflammationm, but, knock on wood, I'm fighting to keep the pouch and avoid even a temp ostomy. The drs will say how many millions have ostomies, but I felt just like Molly so I can totally relate! I'm so sorry you both are having to deal with this disease. Hope you find the support you are looking for and that Molly continues to feel better!
 
I have a friend how has the j-pouch and has to watch what he eats - he's in his 20's... had the ostomy and soooo happy to have the j-pouch now. I hope you don't every need the ostomy. I don't blame you or Molly for never wanting it. They say so many people live happy normal lives with it but how normal can it be for a woman? I think a man could deal with it better - not being sexist but my daughter wears bikinis and would never be seen again in one for sure with a bag:( Stay well and good health to you Caligirl:) These diseases are cruel:(
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi again Janis!! Glad you found your way here!! Good luck!! Did you see the rest of Mr. Ziggy's stem cell journey?
 

DustyKat

Super Moderator
Hi Janis and :welcome:

I'm glad you found your way here 'cause this is a fab place with loads of info and support so please stay around.

My daughter was also diagnosed with Crohns in 2006 aged 14. Her journey has taken a different road in that she was diagnosed during emergency surgery that required a resection but she has been in remission since that time. She is also in her first year at university.

I know exactly how you feel about your daughter and this disease. I wish more than anything that your you and your daughter are able to find peace and relief very soon. Good luck and welcome aboard!

Take care, :hug:
Dusty
 
I'm so sorry Dusty that your daughter had to have surgery...but if it caused remission that IS good news. I don't know what Imuran is... it's familiar so we probably tried it. Gotta look into it. Does she watch her diet at all? Or eat everything?
Thank you for welcoming me to this wonderful place full of amazing people all going through similar situations. Support is a gift and I'm glad I found you all! :)

Good luck to you and your daughter as well... as my friend says - just keep swimmin'!!! What's the alternative? I won't give up in finding a cure/remission for my daughter. xo

(Where do I put the info at bottom of your message about Diagnosed and current meds? Still navigating the whole forum and a little lost! ;))
 

DustyKat

Super Moderator
Imuran is the same as Azathioprine, it's an immunosuppressant.

Roo has been able to eat what she wants since the surgery but over time she has found foods that sit with her better than others. At this point in time she is most comfortable with primarily seafood, vegetables and fruit.

Signature ~ click on User CP, the first option on the tool bar, it's on the top left of the page above post reply. It will then bring you to a page with a menu on the left hand side. Under the heading - Settings and Options you will see edit signature. Click on that and have some fun!

Dusty. :)
 
Not sure if last message went through but THANK YOU! 6MP/Azathioprine/Imuran are the only class of drugs we didn't try because along with Remicade or Humira can cause lymphoma... hate these choices we have!:(

Going to work on signature - you're a sweetheart - thanks!
~Janis xo
 

DustyKat

Super Moderator
I fully understand your hesitation with meds. I felt the same way, like what the hell!

I guess I was coming from a different angle though. As I said, Roo was only diagnosed on the operating table and she had a perforated and infarcted bowel, we were so close to losing her. I guess when I thought about it back then I was seeing what untreated Crohns was capable of doing to some people and I didn't ever want to go back to that place.

It's an awful thing to have to try and pick the lesser of two evils isn't it? argh!

Thinking of you, :hug:
Dusty.
 
Molly, too, was ready to lose colon so we succumbed to Remicade only to get temporary relief and save her colon thus far but it didn't last and the Humira didn't either... lesser of two evils is right and this disease is so evil... they can cure leukemia! Why not Crohn's?? I don't get it. Stem cells on the way - has to be the answer - using our own stem cells to cure...:) I'm hopeful!!!

~Janis xo
 
Hi Molly's Mom - As to what I can eat with the j-pouch - it varies from person to person and from day to day, believe it or not...somedays I can eat corn w/no problem, 2 days later it wallops me - same w/ hot, spicy foods like jalapenos, jambalaya, etc. So, I basically eat what I want and suffer any consequences involved with it cuz I love food - I'm probably one of the few overweight peeps with uc/crohns - so I'm stuck with the diseases and don't even get to be thin - bummer, huh??? Life just isn't fair!

Anyway, I had only been married (2nd time) for 6 months when I had the j-pouch surgery - had to deal with the temp ostomy and had horrific problems with it - output was 3x normal, leakage daily, skin problems, etc - I was an emotional wreck with it, but I know others have no problems with it. My gastro dr seems to think that 23 years of the pouch - I've gotten to live my life somewhat normally and I should consider the permanent ostomy now - he's outta his mind...lol!!! Anyway, I watched the webinar that was mentioned in another thread - it was with the head gastro dr at Cedars Sinai - wow, promising stuff going on with research - I'm thinking if I can just hang on to my pouch for another 3-5 years or so, they might actually have some answers - definitely going to receive a donation from me!!! Plus, I sent a link to everyone I know about sending an email to their congressman to support legislation for funding for research into these horrible ibds...

Sorry, I got on a rant here and posted a long one....tell Molly to hang in there - think positive and refuse to let this disease dictate how she lives her life - and hopefully, she will be as lucky as I've been with it....I'll keep you both in my prayers!!!
 
Thank you:) Rant away!:) I do the same thing a lot...lol...I haven't seen the link for anything promising except stem cells but what an ordeal that is with chemo etc.! Tell me - what is coming in the next 3-5 years? Can you send me the link! I need hope for my girl and lots of friends with this awful disease.

Tomorrow we go to a doc for low dose naltrexone and praying that works. We're done with Humira and 4 weeks later she's 'ok' but concerned something is going to trigger a flare - she needs to take something...LDN looks pretty promising. Have you researched that yet? ldninfo.org has excellent info on there.

Well off and running - stay well and I shall add you to my prayer list - it's way too long these days:( So many people needing prayers....
Love and hugs,
Janis xo
 
Hi Janis - I had to send you a private message cause they won't allow me to post a url yet - apparently I have to have 15 postings before I can do that! Anyway, I hope you get the message with the link - if not, you can find it at ccfa.org under the research section - the webinar was presented by Dr. Stephan R. Targan, MD from Cedar Sinai Hospital...
 
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