Update: on my daughter

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73monte
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Date Joined Mar 2007
Total Posts : 1497
   Posted 1/6/2009 8:17 PM (GMT -7)   
For those of you that haven't seen some of my other posts regarding my daughter (Holly), I'll just give a brief recap of what we've been going through of late.
 
She just spent 10 days in Hospital after being diagnosed with and abscess with a small fistula on her small intestine. Crohn's has become active as well.  It was drained and she was placed on antibiotics. She was released for the Hospital on Christmas Eve, and continued oral antibiotics,(Flagyl), and after having IV prednisone, she went to oral prednisone at home. They want to start Imuran, but she will have to have the Chicken Pox vaccine towards the end of the prednisone taper first.
 
I guess that wasn't such a "brief" recap was it?
 
I've been doing alot of research about what she's been going through. I'm incredibly concerned about this abscess healing, as I've had some replies, and read that they are very difficult to deal with. Most of the info. that I've found is on Perianal fistulas/abscesses. I really don't know if there's alot of difference. The Perianal, sounds more serious.
 
Currently, she is back to school and her sport, (figure skating). So far, she is having some of the typical Prednisone effects. She's very hungry for sure. The one not so typical thing is, that she's immensely tired. I'm not sure if it's that she's still recuperating from 10 days in the Hospital, or whether it's the infection/abscess recuperation time. I've never seen her this tired, accept for the week before she was first diagnosed. She's had no fevers and her BM's are very normal. No diarrhea of constipation. She says she feels discomfort in her side when she runs or skates, but no real pain. Perhaps still tender from the draining.
 
For now  we just wait, as her next appt. if Feb 2nd. They will do a SBFT at that time. The GI feels that the abscess/fistula will close and heal. But I get the immpression that it's a 50/50 thing.
 
The waiting, wondering and worrrying has been extemely difficult. I think I'm getting worse instead of better. By far the most confounding thing about this disease is the indefinite prognosis. My wife says I have to start thinking more positively, but I'm a harsh realist. I think in terms of definites.
 
I don't want to dwell on my issues with this, as I know "Nanners" will certainly give me a firm scolding.
 
Just kidding of course, she's been a tremendous help.
 
Anyway, Thanks for looking. Tomorrow's another day. Hoping for good things for all.
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
Total Posts : 1753
   Posted 1/6/2009 9:10 PM (GMT -7)   
I can't really help with the abscess/fistula matters, but I would be concerned with the amount pf physical activity you allow her to do right now. I overdid it and paid in full after my release from a week+ hospital stay and taking prednisone in tandem. The prednisone made me feel fine but my body was not ready for the activity I attempted on it(I moved into a new apartment AND fixed every room in 5 days by myself along with cooking and cleaning).
I just don't want any new sense of physical freedom induced by steroids to affect her negatively...
And I'm sure you guys are being extremely careful with diet which really does help based on a few personal experiments since last May :)
I really hope she heals up soon and is able to start reaching remission..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 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."


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 1/7/2009 3:58 AM (GMT -7)   
Hi I think LMills gave you some good advice and thanks for the update on Holly .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/7/2009 4:14 AM (GMT -7)   
Monte, I actually think that you are dealing with your daughter's illness very well. I think it's realistic and really helpful to remember that this is an illness that she will have for life. That attitude will help her not to feel so upset and disappointed when this illness rears its ugly head again - as it probably will - and will be of tremendous help to you all as you help her make decisions about her future. While it's good to remember that some Crohn's patients are only inconvenienced by their illness, there are others that become so sick and disabled that they need to change their lives completely if they are to live with this disease. While it's ok to encourage her to keep aiming high, I think that from now on you all need to have a set of fall-back strategies in place: contingency plans she can use for various levels of dependence and / or disability.

As I said, I think you are grasping the reality of a lifelong chronic illness, and you should be congratulated for that. I don't think you should dwell too much on the negatives, but it's always good to keep them in the back of your mind.

Best wishes.

Ivy.
Co-Moderator Crohn's Forum.


73monte
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Date Joined Mar 2007
Total Posts : 1497
   Posted 1/7/2009 4:58 AM (GMT -7)   

Thanks All,

Perhaps more rest is in order. Believe me, I would never push Holly to take on too much. I let her decide what she feels up to doing. The GI is the one that actually encougaged her to do as much physically as she could. 

A lot of what's going on this time is very new to us. When first diagnosed, she had no Hospital stay or infection/abscess. When she started the Prednisone, she seemed to get stronger by the day then. Maybe I can't remember just how long it took. It seemed immediate, but in hind sight maybe it took a few weeks. 

Thanks again,

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.


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 1/7/2009 8:30 AM (GMT -7)   
I am glad she is finally home and that her health seems to be improving. Best wishes to you both!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/7/2009 9:45 AM (GMT -7)   
Hugs Tom!!! I say let her do what she is comfortable with. I remember when first diagnosed my Mom was a real worrywart for me too. I guess thats natural for a parent. We would rather be the person sick, than our child. As for the fatigue, I think her system is a little run down from the infection and hospital stay. Plus not all of us get the super energy from Pred. I just got off it last week and I had no probs with insomnia or anything this time. In fact I was a little more fatigued. Have you had her bloods checked lately? The reason I ask is I had really bad fatigue awhile back and found out I was anemic. I will keep her in my prayers that this abcess/fistula closes up and that she gets feeling right as rain soon. See that wasn't so bad, was it?:)
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

73monte
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Date Joined Mar 2007
Total Posts : 1497
   Posted 1/7/2009 10:24 AM (GMT -7)   

Wow, Gail, you really took it easy on me there. Hopefully, I'm getting better at not letting my anxiety show through in my posts. 

You always seem to make so much sense, and I think you're quite likely correct. Thanks so much for taking the time again. 

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.


HannieBell
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 1/7/2009 2:10 PM (GMT -7)   
Hey there,
I have had 3 perianal fistulae, sub total colectomy, and recently had an abcess drained 2 weeks before my wedding!!! The fistuale totally healed after weeks of oral prednisone and flagyl. The exhaustedness is totally normal, as the Flagyl really rocks your body. I feel depleted when I am on it but it is the only thing that quickly closes the fistuale in tandem with the prednisone. DO NOT worry about the fistulae or the abcess. They will heal in time, just do not overexert. I think it is always really important to allow kids with Crohn's to lead normal lives if they feel like it. Keeping happy is hard enough without feeling like you are disabled and dehibilitated by your disease. Have her take hot Epsom salt baths to speed up the fistulae healing, and keeping the abcess away is easy when you eat organics and stay stress-free.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/7/2009 5:53 PM (GMT -7)   
Hi HannieBell,
 
Thank-You for the encouraging response. I'm glad you've had successful treatment. I should have described more clearly, that my daughters abscess/fistula, is abdominal, and not attatched to the skin or draining to the outside. 
 
I'm not sure if that's tremendously different from perianal abscessess or not. She does seem to be recieving the same treatment as you have.
 
You are the first person to tell of successful treatment though, which I was happy to see. 
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 1/7/2009 6:26 PM (GMT -7)   
Hi Monte,

I'm glad your daughter is improving! It will take time for all the inflamation to go down -- even after the infection is gone. My Docs say that inflamation causes fatigue (inflammation for any reason or disease). Also, I agree with getting more blood work done. Check for vitamin D and B12, which are a typical problem in CD. My D and B12 were low and I felt very tired all the time. Taking D and B12 supplements have made a dramatic difference.

BTW - On the topic of perianal abscesses and fistulae (which I know your daughter doesn't have), the location dictate the treatment and healing options. If the fistula start in the rectum close to the anus, then fistulectomy surgery is often successful (cut it open, let it heal). If the fistula starts high in the rectum, fistulectomy surgery would cut too much sphincter and leave you incontinent. Other surgical procedures have a 60 - 70% chance of success. I don't know about abdominal abscesses, but I hope your daughter's heals ASAP!

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


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/7/2009 7:10 PM (GMT -7)   

Hi FallColors,

Thanks very much for that imput. I'm sure there will be more blood work done in Feb. when she goes back for the SBFT. I think you and "Nanners" are right about that. I will ask about b12 and D.

She has been taking iron since first diagnosed. She was very anemic, and it took almost a year to get her iron stores up. She hasn't taken any since her Hospital stay, but I wouldn't be suprised if she's anemic again. I will be asking the Doctor about that as 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.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 1/7/2009 9:26 PM (GMT -7)   
Hey 73-

Sounds like everything's looking upward. The discomfort is normal (from my perspective at least) and it IS possible that she may be overdoing it on the ice skating. The doctor would tell her to be as active as possible since we all heal better when we're physical. Still, might watch her and hope she isn't doing the Olympic jumps just yet :-P.

She's lucky. I must continually explain to my mother that "God" may perform miracles but he's busy with saving folks in third world countries. My mom is ALWAYS shocked when I explain that I'm having a bad day involving bathrooms. So, that MUST be such a life-saver. Someone whose realistic about the disease and educating themselves for her. You're going the right way. All eyes open but maybe some definite positive arrows sounds like the right frame of mind.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


73monte
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Date Joined Mar 2007
Total Posts : 1497
   Posted 1/8/2009 9:21 AM (GMT -7)   

Hi Joie1,

Thanks for responding. She might be overdoing it abit. She plans on just crashing this weekend so maybe that will recharge her a little. 

After reading your signature, I'm really surprised to see how much you've gone through in less than a year. 2 resections already seems uncommon. "Many abscesses" sounds like a nightmare. 

Don't sell your Mom short, we all deal with this as parents differently, but likely the concern and fears deep down are the same. 


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.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/8/2009 4:55 PM (GMT -7)   
Unfortunately, not all parents or family in general, are so caring and compassionate as you are... I believe your daughter is very lucky in that regard...

Anyway, I agree with everything above about doing as much as she can while she feels up to it... But not push herself too much...

It can be really difficult, sometimes... Especially at a young age (I'll count myself in that number)... There's so much to experience... and you don't want to miss out... but sometimes, you have to for the sake of your health...
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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/8/2009 5:37 PM (GMT -7)   
Thanks Celey,
 
I appreciate the kind words. I've had my shot at life, and I just want my children to get a fair chance, (or any other young person for that matter).
 
Life's tough enough without throwing this into the mix. Definitely alot more difficult to make your way then when I was young. Many more obstacles and dangers.
 
Having to deal with a disease like this one to boot, seems extremely unfair. 
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 1/8/2009 10:26 PM (GMT -7)   
If you think about it ,theres not a lot of definites in life, and there is no normal life, there's just life. You make the best of it. Sounds like thats what you guys are doing. I am sure that you would take all of her pain for her if you could. We always feel that way for the ones we love, but we cant. So you prop her up when she needs it. You let her cry when she has to and you make sure she knows that you are there for her. You may find that your daughter is strong and an inspiration for others. My hopes and prayers for her to be as well as she can as soon as she can. You hang in there too.
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.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/9/2009 3:28 PM (GMT -7)   
Well... I think it is kind of unfair... but I try to think like Sniper does, so I don't get too depressed... This disease is just another gear in the clockwork of life... //>.>\\'... Not a very efficient gear, but a gear, nonetheless...

Again, your daughter is very lucky to have a father like you... And what sounds like a very caring family...

My father's in jail... And I know my mom cares about me (and all of her children), but she really doesn't understand the disease, due in part because of her mental illness...

I'm twenty... and I don't know how to drive because no one had the time (or patience) to teach me... and I couldn't afford driving classes... I have to fill out paperwork and find someone to give me a ride to the grocery store so that I can have food to eat...

All of my life has been pretty difficult (though, I know there are several others who have gone through or are going through, way more than me)... But I'm still here... which means I can still live... and hopefully, take all these experiences... and be as Sniper said.... An inspiration...

I'm sure your daughter can get through this, and be an inspiration, 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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/9/2009 7:44 PM (GMT -7)   

Celey,

You certainly have endured tremendous adversity. You have a such a positive outlook considering what you've been through. I hope you have a good network of friends and other family members that are standing by you. It's so difficult for someone your age to make their way in the world even in ideal situations.

If I could be so bold to give you some fatherly advise. The best way to gain the most independence, so that you can drive, work in the best conditions, not have to worry about income etc. Is to put every ounce of energy you can muster into an education. If you can somehow sacrifice the next few years, it will pay massive dividends for the rest of your life. 

I know it's easy to say, considering that I don't know every detail about your current situation. But even still I would strongly advise you do everything you can to persue this.

You're obviously a caring person, to be on this forum trying to help others, (like me). Perhaps you should check out a career in Social services, or Health sciences.

I hope things get better for you. I certainly will pray for your success. Sorry to get so long.

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
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/9/2009 7:59 PM (GMT -7)   
I wanted to agree with Tom about you Celey...you're a good inspiration for the rest of us well. I would teach you to drive if you were close by :)

Is your daughter getting any rest? I can understand wanting to be out there doing something, anything, after being unable to move about properly for so long..is she able to eat much more lately?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 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."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/9/2009 8:13 PM (GMT -7)   

Hi L.M.

She's following a low residue diet pretty much, and she's constantly hungry, and eating alot. Typical Prednisone side effect I guess.

She is immensely tired though. She went back to school this week, then was at the arena 4 nights as well. It's hard to keep her away from that. I think she should slow down abit. This weekend she has nothing planned, so I'm hoping the rest will benefit her somewhat. 

Hope things are good with you, Thanks for checking in. 

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.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/10/2009 4:12 PM (GMT -7)   
Hopefully, the rest will do her some good... :)

And as for the education bit, I'm already ahead of ya... :)... I'm in college right now, and I actually do plan on trying to get involved in the health sciences... Going to study Biochemistry... :)... I'm glad that there are scholarships out there... and so many people here at the college that are willing to help me... :)... Really makes me feel good... //^_^\\
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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 1/10/2009 8:18 PM (GMT -7)   

Celey,

Guess I jumped the gun on that fatherly advise. I'm so glad to hear that you're persuing that. It will pay huge dividends in the long run. Good luck.

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.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 1/10/2009 8:23 PM (GMT -7)   
The advice is appreciated, though... :)... It's always good to hear some encouragement. :)
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.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 1/10/2009 9:18 PM (GMT -7)   
Hehehe...I'll have to change my signature. I've had two resections but not in the same year. Five-six years ago, I had three surgeries in three months. When I got diagnosed, was when I had my last surgery.

Meanwhile, let's see how your daughter does do after the calming weekend.

Celey, keep it up. My mom...well...we're all pretty sure she's mentally unstable. Extreme paranoia, hears voices, etc. Will NOT see a shrink. So, I can only imagine learning with your mom. Oh...try getting some friends to show you the ropes of driving. My dad's sage advice: Don't worry about the people behind you driving...worry about YOUR driving and what's ahead. Oh...and my advice on driving: Don't get a license until you're sure you can handle the fact that whomever gets in your car with you driving becomes your responsibility during the ride. I figured that out when I was 16...so I waited until I was SURE I could handle that before I went to get my permit at 17 and a half.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P

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