Crohn's Disease Forum » Support Forum » Its been a while, but here I am again in serious tears


10-01-2010, 11:03 PM   #1
BLM
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Join Date: May 2010
Its been a while, but here I am again in serious tears

Hey friends, WOW!! Its been a while since Ive been here, life is hectic at best. My CD is in remission, and I have done a camera endoscope to see other area of my digestion track. I currently take NOTHING, as I had a bad medication interaction and ended up with seizures!! I was hospitalized for a week to get things under control. Im so scared of whats to come with NO treatment, I know its just a matter of time before things go south again.

In the meantime my three year old son has become ill. Hes been having MASSIVE Diahrea with lot of blood. He underwent a colonoscopy on Weds and biopsies came back as early IBD, with possible allergic reaction to diet??!! Im a mess!! I just want to crawl in a hole and hide. Hes my healthy boy, and now loosing weight and wont eat. What do I do?? They want him to start azulfidine ASAP, and follow up with allergy doc on Thurs for testing and then back to GI in Dec. Im devistated, and dont know what to think. Ive been so sick for so long, and so miserable, and now my baby has this crap. Life is so unfair, and I just dont understand why me. Any suggestions for getting him to eat or any support is needed, I feel like Im slipping into a state of depression and I dont know what to do.
Thanks~
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Bev~
Diagnosed Crohns Disease March 2010, suffering for 15 years


Prednisone
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B-12 injections 2xmonth
Daily vitamin
60 mg Lansoprazle
Celexa

As Needed:
.25 Xanax
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10-01-2010, 11:20 PM   #2
Lucy
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Bev so sorry to hear about you and your son. If he will not eat what about Ensure or something similar to get the nutrients in. What does his peds say? I cannot imagine having one of my children having IBD or Crohn's, but hopefully they can help him with the meds. Be there for your son, fight the depression, keep talking to him, he needs you more now than ever. Maybe since you have to watch his diet it will help you along the way too. Even with Crohn's or IBD life can still be wonderful. Please know that I will add you and your son to my prayers. Hang in there, keep us posted, and remember you have friends her to listen. Take care of yourself too.
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DX: Crohn's in the terminal ileum 1997/2010 in colon
Meds: Humira 40 mg injection weekly
This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.
10-02-2010, 12:25 PM   #3
Jennifer
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Hi! Long time no see. Sorry to hear about your son. That's how I was when I was a kid. Having all those tests done on you is scary and I know that having my parents around helped me a lot. Is there anything he has said that he really wants to eat? Perhaps you could try to create this yum yum in a healthier way for him for now. My mom used to make me toast with butter, cinnamon and sugar by baking it in the oven (you can always limit the ingredients). They have Ensure for kids or something similar and its pretty tasty. Hopefully they will find out what's wrong with him so he gets treated properly. Hang in there! Its going to be ok. Also, I don't quite understand why you aren't on any meds.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.

Last edited by Jennifer; 10-02-2010 at 12:32 PM.
10-02-2010, 04:59 PM   #4
Crohns08
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BLM, I'm terribly sorry to hear that you and your young son are doing poorly. It's bad enough that you are struggling with IBD, but it's even worse that such a young child is having to struggle as well. I'm sorry I don't have anything else to say as far as advice goes except to just be there for him, which I know you are. I've been going through a lot more tests and it helps to have my parents there with me. Crabby had a good idea, sometimes we can recreate foods that he likes to be a little healthier which might make it easier to tolerate. Why don't you share some of his favorite snacks/meals and maybe we can help?
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10/2011 - Same abcess, different approach this time, open incision!


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10-02-2010, 05:14 PM   #5
Jerman
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So sorry that you are going through such a difficult time. I am also very sorry that you son is not feeling well, it is always harder to see our little ones suffer, you just wish you could take the pain and suffering onto yourself rather than to see them struggle. It is paramount that you also take care of yourself, especially in terms of your spirit/depression, I myself fell too far down that hill and am still fighting my way back to the top. You may want to discuss this with you physician so that you can be at your best for all of the rest of the trials you are having to deal with. Good luck and take.

Jerry
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10-03-2010, 02:10 AM   #6
BLM
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Hey everyone, thanks for your kind words. So for myself, the reason Im not on any treatment is because I had a terrible drug interaction which caused me seizure. My GI just kind of left me in the dark, hoping i wouldnt bother him anymore with my complications. I switched drs and Im waiting for my apt with my new GI. In the mean time I was in the hospital today!! Im flairing and not well. Not D, but lots of intense pain with sharp burning cramps in my illium radiating around into my back and through my kidneys. I went to the ER, got hydrated, got some pain relief and sent home. The hospital seems pretty useless too. Anyway, its late and I must be to bed. Again thanks for your kind words, it does mean a lot.
10-04-2010, 09:04 AM   #7
Sue-2009
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Awwee....Bev!! ((((HUGS)))) You need to try and stay healthy for both you and your son. I know its hard. If you have a friend/family that you can lean on...that might help. I will send some good vibes and prayers your way...I am so sorry things are tough for you right now....Peace, Sue
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