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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?

My Butt Hurts

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!
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.

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.
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.
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,
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.
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
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.
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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.
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

My Butt Hurts

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...
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
:) 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 :)
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.
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:D
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
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.
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.
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.


ele mental leprechaun
Hope all goes well Trixie and your daughter gets some relief finally whatever the course she follows.

Thinking of you all

:( :( :( 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?
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.
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.
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.:smile: I am going to get some much needed rest before I see her again tomorrow. Thank you everybody!!!
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.

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ele mental leprechaun
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))
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!



One Badass Dude
Hi Trixie,

The surgery route is very evasive, but let's hope it works wonders for your daughter. Mine (very similar) bought me many years of manageable symptoms.

Any further questions or issues the two of you care to discuss, feel free to post them here.
What a difference already!! No more nausea, vomiting, pain. Her bowels are already starting to make noise, which is a good thing. She's up and starting to walk. Her cathiter might come out tonight and she's no longer on oxygen. Her urine output is great. She hardley pushes the button for pain management. She has 16 staples in her tummy. She thought that was funny that they stapled her. They have talked to her about what going to happen when she goes home and the meds she will be on to start with. Everyday is something new to look forward her progress.
only 16 staples???? ha! amatuer!!!!!

:tongue: :tongue:

great to hear shes coming along well! congrat trixie:)


ele mental leprechaun
Thats such good news to hear Trixie.

Amazing how they bounce back once the pain and problem is resolved isnt it?

She will gradually increase in confidence now as the days go by and you will get to see your wonderful daughter again personality wise.

Well done to you all for coping through such a difficult time.

Good News, Her NG tube came out today. She has been eating some liquid foods today. We even wheeled her down to the cafateria for a change of scene. They are talking sending her home at the lastest by Monday. Then the real work starts. She has 3 more fissures that are flared and need watching. He didn't want to remove them because it would have been to long of a surgery and he feels thay can be relieved with medication. They are talking Remicade. Anybody have experience with Remicade? I have been reading some of the other posts and most have been on a short time and it didn't help. I would appreciate any imput you have. Also I have seen just about everybody is on a probiotic's any thoughts on which one? Thank You
She's Home!!!!

She came home Sat. night. She's doing pretty good. Gave me a scare when she passed out in my arms while drying her after her shower. When i went ot fill all her prescriptions they said she couldn't drink alcohol with one of them. I said she doesn't drink but I might be starting. LOL Again Thank you everyone.


ele mental leprechaun
Hey Trixie,

Very glad she made it home. Going to be very weak for some time til she builds back up again. Biggest steps are getting home initially - you can paddle about all you like in hospital but the trip home really drains you...

We all know here you will take exceptional care of your beautiful daughter - just make sure you pace yourself!! Have a look on the treatment section in relation to the remicade. You will find loads of info there as several have been asking similar questions recently with starting it too.

You are just as important as Jean is. You will both get there. Healing ((hugs)) to you both.

Keep us posted.
Update on progress


This is Jean talking now. I am feeling let better now since my surgery happen. My wound is healing nicely. I have no pain at all and that is very good news. We hope it stays that way for a long time. I am eat more now but still watching what I eat still so I don't going into pain again. I am happy that I am in no pain. I go back in December to see the GI about what to do next. I have been drinking more water than anything else. It is going to take a long time to heal and do more stuff. There is certain foods that I can't eat yet problem not for awhile. Well that is my update for now. I will let you know more when I know more to.

Thank You
Great to meet you Jean and to know that you're on the right road at last. Scary time, hey? I bet you are feeling shell-shocked after it all. But you got there and hang onto that thought.

I agree with Pen - it'd be great if you could join our forum under your own (user) name so we could get to know you more. We've all been following your story and keeping our fingers crossed for you and will keep on crossing them that you continue on the road to recovery. Take care and love to your Mum - I know it's hard for you to to see her so worried about you.


ele mental leprechaun
Hey Jean,

So good to see you are feeling up to posting yourself now honey.. Well done that girl!!

As you say its going to take some time for you to pick up and recover but you will get there and get your life back and thats the fun part. Think of all the things you missed doing because you had no energy and so much pain that you could pace yourself and get back to as time goes on eh?

As the girls say come and post under your own name and you will find a fair few here around your own age group. Then both you and your mum can post whenever you want.

You have brought a ray of sunshine to my day Jean. Keep going honey. ((hugs)) to both you and your mum.

Looking forward to seeing you around..
hey trixie and jean!

havent been on this thread yet, so ill say welcome now.
im about the same age as you, jean, ill be 19 in january.

nice to meet someone else who is close in age and tryin to get along with crohns :)

This is Jean again. I go see the Gi on Wednesday to get more info on what to take for medicine. I will let you know what she said. I will post more info on Wednesday night. Everything is going well with no pain or nothing. I am eating everything insight and I know when to stop eating too. Well that is it for now until Wednesday.

Thank You for all the support you guys gave me. It is hepful what other people are going through too.

Thank You Jean

Jean is now talking. I start my humira on Monday. They are going to show me how to put one in my stomach and one in my leg also. Then I do it myself after they show me how to do the shot. I have been doing very well on my other medicine too and I have been eating like crazy. Well I hope the humira will work for me when I start the humira on Monday.

Thank You Jean


ele mental leprechaun
So good to hear you are doing well Jean!

Both your mum and all of us here will be over the moon at your increased appetite and overall improvement.

Hope the Humira goes well honey. Keep us posted. ((hugs)) to both you and your mum.

This is Jean talking.

Jean does not start her humira until Monday the 29th. The Monday I suppose to start my humira was a change of plan because I something else came up that day. I am working also at a Pet Store and I love it there. Well I hope the humira will help also. I have gain weight now that I am eating like crazy too.

Thank You


One Badass Dude
Trixie and Jean: I hope you both stick around.

There may be no cure yet for Crohn's Disease. We all suffer. The ONLY redemptive measure we have at our disposal is to reach out to others similarly afflicted.


One Badass Dude
Christiansen said:
Have you tried Homeopathy?

My son (diagnosed with crohns disease) was cured with this kind of treatment process w/c didn't require any form of surgery and steroids.
this holistic treatment is just a perfect alternative for him considering that he has a number of allergies

God Speed and take care!
I'm not quite sure I'm following...

Your son has already been cured by the same guy you were asking about six weeks ago in regards to your daughter?
long time posting

Just wanted to let everyone know that Jean is doing wonderfully. She had a colonoscapy 3 weeks ago and the Dr. said if they didn't know she had Crohn's you wouldn't have known it. Here colon was that clear. No flareups no nothing. she is still on Humaria every 2 weeks and that seems to take care of it so far. She is back up to her normal weight and her diet is pretty normal also. Still not alot of dairy products, but everything else is great. I hope everybody has just as much success with Humaria as she has had.


Sports Crohnie
hi trixie -
just read this entire thread. what a happy result. i'm glad she's doing well and the smile on your last post makes me feel like you're feeling better these days too.

thanks for posting an update.
thats great to hear trixie!
so glad that shes doing better now :)
you guys had one heck of a ride there and definitly deserve a break.
thanks for coming back and posting her results
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Im doing great now. My humira is help alot now and I am feeling so much better now. Im eat alot now which is good and gain weight now to. I hope everybody feels well with what you are doing and getting back to your normal life. I know I am back to my normal life now with working at the pet store and going back to school now. My school last year I had to drop out because of my surgery and could not continue on with it. Since my surgery I am back in school now and working at the pet store is a lot of fun with working with all different animals. I can finish school now without dropping out this time. By the way I am in collage also. Talk to everybody later.

Have fun with your life if you can.
GoJohnnyGo said:
I'm not quite sure I'm following...

Your son has already been cured by the same guy you were asking about six weeks ago in regards to your daughter?
thanks for picking up on the contradictory posts, Johnny... this member seems to have been here purely to advertise a website, masked by stories about his son then daughter having Crohn's. the member has now been deleted and his posts removed.


Captain Insaneo
trixie said:
Im doing great now. My humira is help alot now and I am feeling so much better now. Im eat alot now which is good and gain weight now to. I hope everybody feels well with what you are doing and getting back to your normal life. I know I am back to my normal life now with working at the pet store and going back to school now. My school last year I had to drop out because of my surgery and could not continue on with it. Since my surgery I am back in school now and working at the pet store is a lot of fun with working with all different animals. I can finish school now without dropping out this time. By the way I am in collage also. Talk to everybody later.

Have fun with your life if you can.
Outstanding story!! I'm glad it's all better now!!