Update: on my daughter Holly

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73monte
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Date Joined Mar 2007
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   Posted 1/21/2009 5:58 PM (GMT -7)   
Holly's been doing okay, except for the fatigue I had indicated earlier. Also, the Dr. has prescribed nystatin for the oral thrush she's developed. As far as her Crohn's goes, the Prednisone seems to be working as expected. Very normal sized daily BM's, large in diameter, which seems to indicate that the inflammation is clearing. The abscess is anybodys guess. I'm still very worried about that.
 
The only unexpected thing was this morning when she got up, she complained of alot of pain in her lower right side. Quite intense for a couple of hours, then it subsided, and went away totally after lunch. Is this a concern? What would be going on that would suddenly cause pain around her TI?
 
As some here are aware, I worry myself into a frenzy.  I really wish I had that coping mechanism, to better deal with things like this. You'd think I just need a couple of drinks, but I only drink when I'm happy. The more I drink, the happier I get. What a ripoff that is, as I won't drink when I'm down or worried about something. 
 
Sorry to turn this into a vent.
 
Tom.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


LMills
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Date Joined Apr 2008
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   Posted 1/21/2009 6:26 PM (GMT -7)   
I'm glad to hear you guys are seeing progress!! I'm not too sure about the right side pain..I don't want to say 'oh it's normal' because I have had cramping seemingly for no reason even when doing well on the prednisone. My guess is that her abdominal area is still very sensitive so maybe she ate something to cause it or overworked her muscles? It's understandable on the prednisone with wanting to eat anything and everything and that energy burst.

You deserve to do something you enjoy to help you relax! Surely there's something you enjoy doing just for you :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 1/21/2009 6:32 PM (GMT -7)   
I guess the Pain in the right side caused by the Prednazone. I feel the same however pred. doesn't work for me also i'm on 2000mg of Pentasa which also doesn't work for me.

I'm glad that your daughter feels better.
best for luck
Age:28
Diagnosed with CD in Jan, 08.
Meds: Prednisone(20mg), Pentasa (4mg) Remicade/monthly, Hydrocodone, prilosec, Fish oil, Multivitamins
Surgeries : NONE
..........................................
Words are, of course, the most powerful drug used by mankind


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/21/2009 6:39 PM (GMT -7)   

Hi LM,

If only you knew how funny/ironic your last sentence is, "something you enjoy doing just for you".

I was a certified golf fanatic. Even had a home business working on clubs etc. Always played early mornings, never took time away from my family. Now I don't even want to think about it anymore. I just worry about Holly all the time.

Thanks for your imput though, when I read some common sense answers like that, I do find that it does put my mind at ease. Hope you are doing well. 

Tom 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/21/2009 7:32 PM (GMT -7)   

Hey Tom!  Keep worrying and obsessing and you risk coming down with your own set of problems.  nono     There is a theory that stress may be a trigger for CD....  And there is a genetic componet to this disease, so take care of yourself!!

I suggest keeping your eye on the major trends and less on every little tick.  For example, if this happens routinely, maybe she should keep a diary of when it happens and what she eats and when.  Then bring it to her doc.


Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/21/2009 8:22 PM (GMT -7)   
Tom, is there a chance that you could get into family counselling or a support group? A child's diagnosis is a shattering thing for the entire family. It sounds to me as if you could really benefit from having some professional advice on how to adjust, and I think it might also help you to talk with some other parents.

Ivy.
Co-Moderator Crohn's Forum.


daisyrambler
Regular Member


Date Joined Jan 2009
Total Posts : 126
   Posted 1/21/2009 8:41 PM (GMT -7)   
i think fallcolors and ivy are right !!! I am very sorry that your daughter is sooo sick .... but I sure she wont miss you if your gone for a few hours to go golfing ..... I think it will do you lots of good ... ivy told me one day to take a be nice to daisy day ... and i did and it helped me soooo much ... I think you need a be nice to tom day ... do what ever YOU want to do ... really it will be fun ....
:)

thanks agian ivy ...

good luck and God bless
> 27 year old female < 
 > Diagonsed with Crohns disease in 2000 <
 
> In 2009 I was told my Crohns is Crohn's Colitis ~ they said the cd in my rectum, colon and all through my small intestine I was told that on a scale from 1 to 4 mine is a 4 i about cried ..... I dont feel that sick : ( <
 
 > Medication - pentasa(4000mg), imuran(100mg), prednisone(40mg untill around Feb 9 then i get to tapper), potassium, vitamin C, multivitamin, b-12, iron, and fish oil, plus i will start humira around Feb. 9 <
 
> I thank the Lord every day for my amazing husband and wonderful family <


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 1/21/2009 8:48 PM (GMT -7)   
:-) I'm glad it helped, Daisy!
Co-Moderator Crohn's Forum.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/22/2009 3:53 AM (GMT -7)   

Thank you all for the supportive responses and suggestions. I probably do need some sort of councilling to tell the truth, but I'm just not the type for it, and would never likely consider it. I'm sure there are many that would benefit from that once they get so consumed by something and can't sleep or live normally anymore, or feel without hope. 

I've always been kind of the hope springs eternal type, but feel that life is kind of like the Perfect Storm movie right now.

As far as doing something for myself, I just don't feel like it to be honest. I wish I didn't feel this way but...

The hard part for me is, that my daughter was feeling great, thriving, excelling at her sport, doing well in high school, then one week later, she's in a Hospital bedridden for 10 days. I actually thought she was going to be able to stay on the managable side of this disease, and have a great life, with maybe a couple ups and downs. I can see now that I was just insulating myself, and that I didn't have a realistic view.

I'd better wrap this up, as I can see I'm getting way too long again. I hope I'm not coming accross like I'm coming unglued or anything like that. I'm just maybe depressed or down or just haven't got to a certain place with all this yet, that my perspective will be better to handle it all. Hopefully it will come.

 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/22/2009 4:20 AM (GMT -7)   
You're not coming unglued, Tom. I said before that I think it's great that you do have a realistic view of this disease. Many of us suffer from unrealistic and unsympathetic relatives who think that this illness is something we can recover from, if we just change our lifestyles and attitudes. Your daughter won't have that problem with you, and I think that's wonderful.

The reason I suggested counselling is that we see the newly diagnosed quite often on this forum, and their families, and we get some idea of what the general timing and trajectory of the grieving and acceptance process tends to be.

You are dealing with it, and I think that's great, but I think you're having an unusually traumatic grieving process... probably because you are being unusually realistic about your daughter's disease. I just think it would help if you could chat with other parents, even if you didn't talk with a counsellor, so that you could see the light at the end of this tunnel.

It is very likely that your daughter will find some medicine that helps her, and that life will become more stable. It'll be different - it will always be different now - but eventually the different will become the new normal :-). Just give it time, Tom. You'll get there.

Best wishes to you,

Ivy.
Co-Moderator Crohn's Forum.

Post Edited (ivy6) : 1/22/2009 4:23:15 AM (GMT-7)


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 1/22/2009 4:34 AM (GMT -7)   
ps. One thing that I learnt while dealing with my mother's illness was that my worrying wasn't going to help matters at all. Whether she got better or not had nothing to do with me, and everything to do with God, doctors and medicine.

Realising that helped me to let go of my stress and start appreciating each day we had together.

Really, Monte, worrying is a fruitless exercise. You can be supportive, you can monitor your daughter's health and advocate so she gets the best care possible, but grief over lost opportunities and worrying about "what ifs" will get you nowhere in the long run.

This isn't a lecture or a guilt-trip: I'm just sharing something I learnt over some long and painful years while watching my mother die of cancer.

Ivy.
Co-Moderator Crohn's Forum.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/22/2009 4:44 AM (GMT -7)   

Thank-You Ivy6,

You are obviously a very wise individual. I believe what you're saying is very accurate. I am being harshly realistic, maybe too negatively harsh, and perhaps am in a sort of "traumatic grieving" phase.

I'm not sure how to get out of that. I'm guessing that that's where time comes in. Once again, I appreciate your suggesting talking to others, and if I happen accross that, I'm sure it would help, but I won't likely seek it out. I do enjoy this forum though. It's armed me with alot of knowledge, and the opportunity to share my experiences and perhaps even help others new to all of this like I was. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 1/22/2009 5:23 AM (GMT -7)   
Tom, This is just a guess I have come up with from my own experience with LRQ pain. I think its gas that expands the area that is sore. As the gas move down the pain goes away. But remember that nothing has to be wrong for gas to hurt. You probable have had gas pain yourself so try not to worry so much. Hope she continues to improve and life gets brighter for you all soon.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 1/22/2009 5:49 AM (GMT -7)   
Hi Tom If Holly's pain just keeps coming back then you will probably call her Dr. so you know what to do. I was thinking that since you like to do something about things that joining your local crohn's and colitis society will give you a opportunity to actually become involved in lots of helping ways. Also you need to take time for yourself each day it will help you to be a less stressed out person and improve your thought pattern,you have to have time to not worry about things it will be better for times you might need to be a little more involved in her care.

Glad you are reaching out and go for a walk or cook, or ... a person doesn't need liquor to be happy, it comes from within and is sometimes , something that needs to be worked on ... Go smack that ball around a morning a week or something... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/22/2009 12:08 PM (GMT -7)   

Hi Gail,

I will certainly call the Dr. if this persists. She seems fine again today. Perhaps as "Sniper" suggested, maybe trapped gas, who know with this disease.

As far as volunteering, our Crohn's/Colitis chapter is very small. They do have a walk-a-thon each Summer, which we did participate in the first year. I know it's a bit of a cop out, but I just don't have much available time at this point for a commitment like that.

I just wanted to clarify from one of my posts when I mentioned having a couple of drinks. I hope you didn't get the impression that I'm turning to alcohol, or have an alcohol problem. I just meant that many people enjoy a glass of wine, (or two), at the end of a long day. In my case it's ironic, that I would only have a glass of wine after a good day. So therefore, wouldn't opt for that to soothe my current state of mind. Alcohol is suppose to be a depressant, but for me it makes me happy. Kind of backwards I guess.

Tom


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/22/2009 1:15 PM (GMT -7)   
73monte said...

The hard part for me is, that my daughter was feeling great, thriving, excelling at her sport, doing well in high school, then one week later, she's in a Hospital bedridden for 10 days. I actually thought she was going to be able to stay on the managable side of this disease, and have a great life, with maybe a couple ups and downs. I can see now that I was just insulating myself, and that I didn't have a realistic view.  

From your signature it looks like your daughter was diagnosed almost two years ago.  One flare, although this sounds like it was a doozy, in two years with excellent health in between sounds pretty good indeed.  Obviously, I don't know all the details of her situation.  But to jump to the idea that her disease will be unmanagable in the future or that she won't be able to have a great life is awfully pessimistic.  Maybe you need a reality check in the opposite direction.  She's young.  She's otherwise healthy.  There are many treatments she hasn't tried yet, and more come on the market every year.  She may have challenges that her classmates don't have to face, but she also has advantages that some of them will never have- supportive parents and good health care.  I know from personal experience that it can be very hard to look for the positives when you're down the well.  But it could benefit both of you to ignore a little "reality" and focus on what her goals are (health and a happy life) and what can be done to achieve them.  Because she can have those things.  Her eventual definition may be a little different from others, but a happy life means many things to many people, so in that she's no different at all.
 
This essay has absolutely nothing to do with Crohn's or health.  It's actually about writing and publishing.  But whenever the topic of reality comes up, I think of this.  And I try every day to be a rat with an island.  http://jennycrusie.com/essays/ratswithislands.php

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 1/22/2009 1:21 PM (GMT -7)   
Hi Tom I was referring to happiness not alcohol .. and saying that happiness isn't always around we need to find it ,it can consume a person if we worry all the time and never find our inner happiness. It does not exists without letting it enter in. I would much rather be around someone who can laugh and be happy then with someone who is always down. A balance in our emotions is a good menu for life... by the way were you good at golf? It is good for keeping the body fit ..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


cutie
Regular Member


Date Joined Jan 2009
Total Posts : 80
   Posted 1/22/2009 1:37 PM (GMT -7)   
Speaking of happiness...I laugh more now and do more things that I want to do than I have ever done before ( when I was "healthy") I have "guts" because I don't know what's going to happen next so I live life to the fullest that I can!!!!!!!
age 41,diagnosed with CD in 11/07, Rx Pentasa 4000mg and Remicade.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/22/2009 4:35 PM (GMT -7)   

Okay.....

I seem to be digging myself deeper with every post about my outlook on this whole ordeal. First of all, I want to Thank all of you so very much for attempting to give me a good shake and snap out of it type advise. I totally agree with what all of you are suggesting, and I would likely be giving myself the same advise. 

I just can't seem to get off of this negative ride I've been on. I can't seem to stop thinking about both sides of what the future might hold. I do try to be hopeful, and think maybe the meds will work, maybe her life will be fine, maybe new treatments in 5-10 yrs will offer all kinds of new possibilities. Yes, all very true, maybe. But doesn't anyone ever think about the opposite maybes? 

I don't think I'm explaining myself very well at all. It's kind of like flipping a coin. There's a 50/50 chance of heads or tails. Even if heads comes up 10 times in a row, there's still a 50/50 chance of either or. The probability of heads continuing to come up is lessening with each flip. What I'm trying to say is, you can keep hoping for heads to continue coming up, but the fact is it won't. That's sort of why I'm having such a hard time being positive. 

So now that everyone reading this, (hopefully not too many), thinks I'm totally nuts!!

Tom.

 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/22/2009 4:45 PM (GMT -7)   
OK. Here's an idea. Instead of carrying all this around in your head, why not write it down?

I am a big believer in planning ahead. Start a piece of paper for the worst-case scenario, and start another piece of paper to work backwards from there, to the best case: scientists finding a cure for this disease.

Worst case scenario might be total disability. Think about how likely this might be (as a clue, the people on this forum tend to be sicker than your average Crohn's patients, but most of us still manage to maintain some semblance of a life, at least some of the time), then think about how you, Holly and your family might be able to deal with this, e.g.

* think about homeschooling - do research to see whether she'll be able to get to college without a traditional high school diploma
* think about moving, if we're not close to hospitals, clinics, shops etc
* find out whether it's possible to order groceries etc online. If it is possible, teach Holly how to do it so she can do it if we're not here
* think about insurance - now, and for Holly after she "graduates" from your insurance
* investigate what social support services are available for people in your area with severe illness and disability
* investigate college scholarships for people who've dealt with illness and hardship
* etc

Better case scenario planning might be:
* encourage H. to live in a dorm instead of shared housing while in college, so she can devote herself to her studies without having to worry too much about housework as well
* encourage H. to gain some skills that will enable her to work from home / casually / or temp if she is in a flare but still needing a bit of money - typing, medical transcription, secretary, etc


You'll probably have ideas of your own. What I'm trying to say is that problems aren't always insurmountable, especially if you plan ahead.

Ivy.
Co-Moderator Crohn's Forum.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/22/2009 6:32 PM (GMT -7)   

Thanks Ivy,

That's a very practical approach, cosidering and preparing for all possibilities. While I haven't done a detailed list like you're suggesting, this is more or less what I've been wrestling with.

Thanks for taking the time. The bottom line is, I think I really just need more time, and maybe some good news, some success with treatment and meds, and that will get me on my way. Of course I have to get through the waiting first.

Tom.

 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/22/2009 7:01 PM (GMT -7)   
I know you are anxious about her upcoming test and time is going by ,how much longer? Hugs..lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/22/2009 8:06 PM (GMT -7)   
Hi Tom,
I just wanted to see how things were going. I have been thinking about both of you! Ivy's suggestions were really wonderful as well. I was homeschooled, did really well, and am basically being payed to go to my state's university through scholarships(provided grades stay well). Life will be more difficult yes, but I just wanted you to know that it is perfectly reasonable to believe that she can have a happy productive life. There will just be some bad periods in between. And one great benefit to this disease is that it allows you to truly appreciate the good things in life you normally take or granted and gives you great character. She'll be able to grow into someone who can see so much more than your average young woman...
I just want you to know that it isn't wrong to hope because we can still lead wonderful, fulfilling lives. And I imagine with your support that she will :)
I just hope you find something to help YOU...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/23/2009 8:31 AM (GMT -7)   
Tom, it's usually best to get counselling as soon as possible (when you start getting depressed and anxious as you are)... because if you keep putting it off, most likely, it'll only make things worse. I speak from experience on this... (My disease had made me very depressed *I was dealing with a few other issues as well, but that was the main one*) I was constantly worrying about what could happen (often taking the worst scenario into account. I was afraid I would need surgery or that some complication would occur and I would die or that I'd have a bad side effect from one of the medicines I was taking). I was also frustrated with the fact that I wasn't 'normal'. That I couldn't live a normal life like everybody else. That I couldn't eat whatever I wanted or participate in all the activities I wanted to participate in.

I was even very angry because I've known people my age, people who are perfectly healthy, throw that health away by doing drugs or alcohol or even just simply smoking. I never did those things. I felt that I didn't deserve this to happen to me, and sometimes, even now that I'm feeling better physically and emotionally, I still feel that way)... I was frustrated with the way I felt (physically) and how I couldn't see what was going on... How I couldn't get rid of it...

I just kept spiraling further and further downward... and I waited on getting help. (I can say, though, it was a good thing that I did get help... even if it was a little late)... I don't think you'd reach the extremes I did, but I still think, for the sake of your mental health, it'd be good for you to get counselling.

Anyway, pain is an unfortunate symptom of Crohn's disease (it doesn't necessarily mean that something needs serious medical attention. As a rule of thumb, if the pain gets so bad for me that even the oral painkillers can't take it down (or if its really bad and I don't have painkillers) or if its coupled with nausea/vomitting and/or excessive sweating/chills and fever, I go to the hospital)... *Yet another reason why I was so depressed. It's hard to cope with being in pain almost every day (there were several periods I wasn't given any painkillers) and not get depressed. I had the added bonus of not only Crohn's pain, but also pain involving my right ovary, and joint pain. A triple whammy. It was awful. *I'm still dealing with the joint pain; it gets me down every now and then, but I'm just so happy I'm not having tummy pain, too*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 1/23/2009 2:18 PM (GMT -7)   

Tom,

I'm sorry to hear about your daughter having crohn's period, let alone at the age of 13.  How is she coping with the disease?  I understand how you feel as her parent, but I hope she isn't worrying about you on top of coming to terms with her illness.  My worry is if she thinks you will worry, she may not tell you about her symptoms.  Ivy has made some very good suggestions, and I hope you follow her lead in your own time.  Also please remember that when your daughter finds the meds that work for her, there is light at the end of the tunnel.  I have had crohns for 29 years, it has become a fact of my everyday life.  No it isn't fair, but things could be alot worse.

Take care,

Julia

 

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