Crohn's Disease Forum » Parents of Kids with IBD » Daughter with Crohn's


 
10-28-2008, 08:26 PM   #1
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
Daughter with Crohn's

Finally someplace I can hopefully get my daughter and I some much needed support and not maybe it's this or this.

My daughter was diagnosed this year with Crohn's. After 2 years of weight loss, diarreha, vomiting we went to the Mayo Clinic and after lots of tests they figured out what it was. She started out on Azothyprine and Entocort. Did great until she got and eye infection. REduced the azo and went on another medication for eye infection which screwed things up royally. Things straightened out a little and in July went back on a higher dose of azo and entocort. Starting in Aug. she went to ER with fever, chills and dehydration. They said she had a UTI and antibiotics and rehydration and she was fine for a month. In Sept the same thing again. Mayo took her off the Azo. 8 days later the same thing and after the meds were done back we go to the ER again for the same thing. This time they took her to a different hospital and ran all kinds of tests. Only thing she showed was a low white cell count. They put her on a different antibotic and sent her home after 4 days. A week later same thing and I stopped the Entocort. A week later we went back to the Mayo and had blood work-up and guess what, she had the best bloodwork ever in 3 years. Everything was normal. Her Iron levels haven't been normal for 3 years and now great. No more meds for now. Well that was short lived. She now has the chills and fever again and the vomiting. I don't know what else to do. She's not on any meds at all. So we know it can't be the meds causing this. Any suggestions?
10-28-2008, 08:30 PM   #2
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
Aww, glad you're here. How old is your daughter??
Treating Crohn's is a lot of trial and error. I'm been on like 15 different drugs total for all different things since 2002, sometimes they wear off, sometimes they just don't work.
Sorry I can't help you more than that, but welcome!
10-28-2008, 08:44 PM   #3
D Bergy
Senior Member
 
Join Date: Apr 2007
Basically, most of the Crohn's drugs are immune suppressants. The fact she caught an infection while being on the immune suppressing drugs stands to reason. She simply was more vulnerable than a normal person.

The antibiotics took care of the infection but if antibiotics are used a probiotic should also be used. I am treating my father for a yeast infection right now from his long bout with antibiotics and no probiotics. He thought it was nonsense at the time, but he is taking them now and glad to have them.

The low white blood count could be from the Entocort. I am not familiar with the drug but I am sure it is an immune suppressant. I do not think it would be unusual to have a lower white blood count while on one. Others here know more about these drugs than I do. I do not use them.

I do not know what is wrong at this time but I would suspect yeast is playing a role. I doubt it is the whole problem.

You will need a professional diagnosis, but I certainly would use some probiotics to possibly help or prevent a problem from all of the antibiotics.

I would have several things to try, but they are outside the scope of traditional medicine and you really need a doctor to diagnose the condition properly.

I hope you can get some answers.

Dan
10-28-2008, 10:35 PM   #4
Guest
New Member
 
Join Date: Oct 2007
hi Trixie, & welcome.

sorry your daughter is going through such worrying times.. must be very hard for you both. i can't really comment on what may be going on - none of what you posted rings any bells with me. but i would suggest, try & get her to a different consultant, one who specialises in blood issues.. and stick with that one, at least until investigations are complete. it may well be that after diagnosis, she might need a GI if indeed it is Crohns. but at least you'd be more informed of what is happening with her body.
10-28-2008, 10:55 PM   #5
jed
Senior Member
 
jed's Avatar
 
Join Date: May 2008
welcome trixie
__________________


Current meds - Methotrexate, the rest werent doing anything.
Current state - hopeing poop softener, honey and cinnamon tea make me poop like a crohnie again..

my story - http://www.crohnsforum.com/showthread.php?t=3093
10-29-2008, 01:05 AM   #6
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
She is 19. We have been to a GI at the Mayo Clinic. That is who diagnosed her. We were at the ER again tonight. She has been off any kind of drugs for over a month and she again had fever, chills and dehydration. They admitted her into ICU because her blood pressure is so low and heart rate is way up. The doc will call MAyo tommorrow and see what way to proceed. Hpefully no surgery but that is what they talked about last time we were there. It is in her Ilium at this time.
10-29-2008, 01:18 AM   #7
jed
Senior Member
 
jed's Avatar
 
Join Date: May 2008
frustrating isn't it?

really feel for you and your daughter trixie, many of us have been down that path ourselves.

hopefully you can both get some good news from the clinic.

and if it turns into a surgical path, its not all that bad. i went for quite extensive surgery last year, and its been the greatest thing i've ever done with this disease. changed my life completely.

best wishes,
jed.
10-29-2008, 02:56 AM   #8
drew_wymore
Senior Member
 
drew_wymore's Avatar
 
Join Date: Nov 2007
Entocort being a mild steroid *shouldn't* have caused the low white count, in fact it should have raised it. I've been told by my GI and GP that steroids increase the body's white count.

Azathioprine seems like a more likely culprit. One of the side effects is bone marrow suppression which could explain the low white count.

It sounds like she's in the best place she could be right now though, although I'm sorry she and you are going through all this =( My thoughts are with you both and hopefully Mayo and the hospital can come up with a plan of action to get her onto the road to recovery and stay stable.
__________________
shamless plug for my website .. http://www.youmakemefeelinadequate.com
10-29-2008, 08:23 AM   #9
Mazen
Senior Member
 
Mazen's Avatar
 
Join Date: Nov 2006
Location: Beirut, Lebanon
Why don't they try and give her one of the 5 ASA drugs (Asacol, Pentasa...); they have less side effects and may help. good Luck
10-29-2008, 08:34 AM   #10
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
She had Pentasa and it never did any good. She has been off all drugs for a month now. We thought this past weekend it was from a pizza we had that got me sick also. But she also had dental work done because the consistant vomiting has started to decay her enamal on her front teeth. Guessing right now. I know surgery is an option, but so is Remicade and Humria. Any thoughts on any of these? She doesn't have an obstruction and can keep food down pretty good if we can find the right stuff to eat, lactose intolerant, tomato products and greasey foods tend to upset her the most right now. Will know more later today after the tests all come back.

TAlked to the ICU nurse she had 6 liters of fluids before she wanted to pee. That's alot of liquid. Fever is gone and heart rate is back to normal. Will see what other testa say later.

Last edited by trixie; 10-29-2008 at 09:11 AM.
10-29-2008, 09:17 AM   #11
Mazen
Senior Member
 
Mazen's Avatar
 
Join Date: Nov 2006
Location: Beirut, Lebanon
Sorry to hear about that trixie. Have you tried the SCD diet or maybe going elemental; here are some links:

http://www.crohns.org.uk/Docs/3/The%...20Disease.html
http://www.pecanbread.com/
http://www.breakingtheviciouscycle.org/
10-29-2008, 02:17 PM   #12
Guest
New Member
 
Join Date: Oct 2007
sorry to hear she got so bad that she needed admitting, Trixie.

i'll be keeping my fingers crossed that the results do indicate what is going on, and the doctors can then take steps to get your daughter well again.
10-29-2008, 02:27 PM   #13
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
Thanks to all of the responses.

Just got back from the hospital. They are keeping her for another couple of days. She is on a liquid diet and still has pain after a popsicle. The Mayo wants to see her next week if she gets better enough to send her home before that. Her heart rate is down and she is on her 7th bag of fluids with potassiam and a calcium drip also. She looks better but isn't if that makes sense. I will keep everyone posted.

Again Thank You
10-29-2008, 03:31 PM   #14
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
I remember just before I was diagnosed I told my doctor that my belly would hurt almost instantly after drinking a soda or kool-aid. (Her brilliant answer was "then don't drink that") A popsicle is similar ingredient wise to those. I know that sugar can cause inflammation, but I don't know if it's instant or not. A popsicle might not be a wise choice for her right now. Just thinking...
10-30-2008, 08:03 PM   #15
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
An update:

She has been moved out of ICU and into a regular room. Still on and IV and pissing like a racehorse now, which is good. She is starting to eat more solid foods now. One great thing that has happen, her nurse and CNA tonight both have either friends or relatives with Crohn's and have been giving her lots of suggestions and handouts they are printing off the internet. Her nurses friend is controling hers by diet alone with no pills or surgery. The dietician has been notified to come and talk with her and give her more handouts. So we will go through the cupboards and donate to the food pantry this weekend to get out all the "processed and junk foods". We raise our own beef and pork so I'm not worried about alot of chemicals in that. She might get to come home tomorrow YEAH!!
Thank you everyone
10-31-2008, 04:10 AM   #16
Guest
New Member
 
Join Date: Oct 2007
lovely to read that your daughter has improved now Trixie, and to hear you sounding happier too!

it must have been so heartwarming to have those chats with the Nurse & CNA, really pleased you had that nice surprise - and it may well go on to change things for your daughter, if the dietary improvements prove to ease her symptoms.

hope she goes on ok from here
10-31-2008, 07:17 PM   #17
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
She's home !!!!!!

All tests af course for anything were negative. No infections. We are thinking a reaction because of novicane? Not sure. Can't be sure about anything that has happened. Only that we will watch what she eats and all of us will eat healther. Have to have my junk food out of the house now. I'm just glad she's out and doing alot better. But this has happened 5 times now over the past 2 months. Hopefully it won't happen again.
10-31-2008, 07:24 PM   #18
jed
Senior Member
 
jed's Avatar
 
Join Date: May 2008
great news to hear she's home.

just remember that eating healthy for most people may not be eating correctly for her now. read up on all the diet threads around here for the best results for her

againi, glad to hear she's going well
11-01-2008, 06:41 AM   #19
crohnsmom
Member
 
Join Date: Jul 2007
Trixie,
To say I know exactly what you are going through is an understatment! My 21 year old son became ill while away at college at the age of 19-turned out to be Crohns, and that year was a mightmare with flares, hospitalizations, and medications that culminated in resection surgery in spring 07. Truthfully the surgery was the best thing that happened for him since his terminal ileum narrowing and scarring was beyond any other conventional treatment.He has been in remission since then and is due to graduate from college this spring.
The hardest thing for a parent is to see their child suffering and be helpless to do anything-our role is always to make it better! The support I received here on the forum was really a lifeline of hope for me during the darkest days-I know you too will find it invaluable!
If there is anything I can ever do please feel free to contact me-this is a complicated and sometimes baffling disease with life long implications-it is a roller coaster ride! Try to remember there are periods of remission out there for many sufferers, and most people are able to lead pretty normal lives with good medical care and follow up.
Wishing you and your daughter only the best
Sincerely,
Ramona
11-04-2008, 10:19 AM   #20
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
Here we go again. Started throwing up again last night. Left a message for Dr at Mayo clinic. Will also talk to Dr at hospital where she was admitted last week. Just so he know what's going on. Probably anothe CT scan in the near future if she can tolerate it. It makes her nauseated. I think surgery's getting closer than we want.
11-05-2008, 07:15 PM   #21
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
WE go back to Mayo Clinic on Monday afternoon to see the surgeon and Dr. WE aren't sure if surgery is going to happen but it's leaning towards that. If we do have surgery it can be done at our local hospital and not 2-1/2 hours away. I can't afford to stay in a hotel for 5 day's or more and eat. So at least I'll only be 20 min. away. In a way I'm hoping for surgery to help her have a "normal" life for awhile. We'll see.
11-06-2008, 06:35 AM   #22
Guest
New Member
 
Join Date: Oct 2007
wow what a rollercoaster you are all on with this....

maybe surgery is going to be the way to go... it's worth going through if she can regain a steady and improved quality of life. certainly, it's not good carrying on the way things have been.

i'll be keeping my fingers crossed for her.. please keep us posted, and all the very best.
11-06-2008, 08:34 AM   #23
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
Hope all goes well Trixie and your daughter gets some relief finally whatever the course she follows.

Thinking of you all

((hugs))
__________________
Jan

IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
11-09-2008, 04:05 PM   #24
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
Jean was taken to the UW hospital by ambulance Sat. night.She doubled over in extreme pain and vomiting constantly. I took her to our local hospital and they did a CT scan. She has severe thickening in her ilieum and large intestine. They say she is in a flare. She has NEVER had anything like this. Not even when she was first diagnosed. She's crying out for them just touching her belly. And of course everybody has to come in a push on her belly. When we got to the UW she was kind of daised from the pain meds they gave her. (Let's all have some pain meds) No fever or chills. The intern came in and took her accessment. She got up to use the bathroom and got the chills so bad she was shaking like somebody having a siezure. The Dr by that time came in and she was as pale as a ghost. In so much pain and couldn't do anything but moan on the bed. her teeth were chattering so bad she couldn't hold still. He said he has to go and get the intern so he can see what going on because he has never saw anything like this. My mom was so mad. They are supposed to be taking care of her and not using her a a guinea pig. He say's there are other patients that he has to see also. We had been there for almost 2 hours before they started doing anything. But boy did they move fast when she turned white. 15 min. later she had 101 fever. She has not had normal bowel movements for over a week. They are worried she could have had too many antibiotics in Sept. Her good Flora is gone and the bad has taken over. She is on antibiotics now and potassium, and will be started on prednisone thru her IV to help with the inflamation. She gets pain meds every 4 hours and tylenol suposatory also to keep the nausea down and help with the fever. She's finally able to drink water but it still hurts in her belly when it gets so far down. She ahsn't eaten a "meal" since Friday night and that was very little. She's down to leass than 110lbs and still dropping weight. They aren't sure if surgery is necessary at this point. They don't want to unless it is needed for sure. I just hope this time we can do something to help relieve the pain and symptems and not just ignore them or jump to something else without finding out why she's having so many visits to the ER for deydration, fever. Anybody else ever have it this bad?
11-09-2008, 06:08 PM   #25
jed
Senior Member
 
jed's Avatar
 
Join Date: May 2008
so sorry to hear she's having this really rough patch.

and yeah, i went thru this hell she's going thru at the moment. really feel for her.

best wishs.
jed.
11-09-2008, 07:35 PM   #26
CookieCat
Senior Member
 
CookieCat's Avatar
 
Join Date: Nov 2008
Hi Trixie, I am also really sorry to hear how sick your daughter is at the moment. When my tummy flares up bad I also get fever and chills, shaking and vomiting - it is horrendous. I got so bad last year that I had to go to hospital to emergency and they ended up doing a laparotomy and took my appendix out (it was healthy) but because they were looking at the outside they couldn't see what was going on inside my bowels. It wasn't until I had a colonoscopy and they saw the ulceration and strictures that I got diagnosed with crohns.
I really hope your daughter starts to get better soon. At least she is in the right place for now and the docs will look after her. You take care of yourself too - your daughter needs you right now.
Love
Cookie
11-10-2008, 04:10 PM   #27
trixie
New Member
 
trixie's Avatar
 
Join Date: Oct 2008
Location: Wonewoc, Wisconsin
An update on Jean:
At 3am this morning she had emergency surgery. Nothing was helping to relieve the pain. They removed about 12" of her small bowel including the iliuem where she was blocked. She is so much more comfortable already. Hardley any pain. If she does she pushes a button and gets pain meds right away. They put a picck line in because her vains have all collasped. So now they can get her some nutrition also. They were getting her up and about later this afternoon. She already was watching cartoons and more alert. Boy what a difference already. She still had 2 more spots with Crohn's they could see, but felt they could manage thses with meds instead of cutting them out. It has been a very long ordeal and probably more to come with followup and meds, but she is on her way to recovery. I am going to get some much needed rest before I see her again tomorrow. Thank you everybody!!!
11-10-2008, 06:02 PM   #28
jed
Senior Member
 
jed's Avatar
 
Join Date: May 2008
you sound so relieved trixie, wonderful to hear!

surgery is never good, but it just may make things so much better for your daughter.

so glad to hear she's recovering well.

Jed.

Last edited by jed; 11-10-2008 at 06:17 PM.
11-11-2008, 12:03 AM   #29
soupdragon69
ele mental leprechaun
 
soupdragon69's Avatar
 
Join Date: Dec 2006
So very glad Jean has some relief finally Trixie. You have all really been through the mill.

Hopefully she can turn a corner now and have a vastly improved quality of life.

Well done to you all for coping through it all!

Thinking of you. Wishing you all well. ((hugs))
11-12-2008, 04:27 AM   #30
CookieCat
Senior Member
 
CookieCat's Avatar
 
Join Date: Nov 2008
Brilliant to hear your daughter's come good Trixie. Makes me feel hopeful too...

Rest up yourself I am sure your daughter is going to need you over the next few days. My Mom is already getting sick of the errands I have been sending her on to get me things from home. Thought I'd packed everything, but as always I forgot things!

Cookie
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Daughter with Crohn's
Thread Tools


All times are GMT -5. The time now is 02:35 PM.
Copyright 2006-2017 Crohnsforum.com