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kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/9/2008 6:40 AM (GMT -7)   
My daughter (15) was diagnosed with crohns about 6 months ago.  She has recently been diagnosed with arthritis in her back as well.  Her joints ache constantly and she is always tired.  She is currently in a "flare" and they are having a hard time controlling it.  She is taking prednisone, lialda, diclufenac and prevacid.  Last night she tried to go to her first high school dance but seemed to have an anxiety attack.  This is a first for her.  I have read where some medicines can increase this possibility.  Does anyone know if there is a correlation between crohns and anxiety.  I realize that stess plays a huge part in crohns.  I am at a loss and my heart is breaking for her so any help would be appreciated.  Thanks
 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/9/2008 6:51 AM (GMT -7)   
Hi The pred. is a hard med sometimes on the mind and yes anxiety does play a roll with crohn's. Sometimes a person pushes a little too hard and becomes a bit overwhelmed with the problems .Was her worry from perhaps getting the D or is she in a weakened state from being sick. Being in a flare now and trying to go to a big public function like a dance must have been a bit too much. Better days ahead I hope. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/9/2008 8:09 AM (GMT -7)   
thank you so much for reply---I do think she is overwhelmed. She has missed 8 days of school and it is so much to make up. One more question--I am so new to this and I am not sure what to feed her. I am going to meet with a nutritionist but until then any advice on foods that are gentle. I know it is all individualized and we are trying to look for the triggers. The pred is making her so hungry! Thanks again

FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 11/9/2008 8:32 AM (GMT -7)   
Everyone is different. I tolerate rice, bananas, apple sauce, protein bars, soups, bland chicken, sandwich meat. As I feel better I add more in.

I get panic attacks at times when I feel like I am trapped without a bathroom or in a situation where getting D (diarrhea) would be a really big deal. That may have happened to her.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 11/9/2008 10:11 AM (GMT -7)   
My son was put on prednisone for 8 weeks following his diagnosis. It totally changed his personality. I was never so glad to have him off it, as I got my son back.

After missing that much school, you might want to call her counselor and ask for an extension on getting work in--either that or email each teacher separately and ask on your own. I have always found them very accommodating and understanding when communication is open. Maybe this will help your daughter to feel a little less overwhelmed.

As for what to feed her, though I know all Crohnies are different, tens of thousands have found relief with the Specific Carbohydrate Diet (SCD) or similar diets. (Sadly, I cannot speak highly of my experience with nutritionists.....and sadly, doctors won't tell you about the SCD) If you care to check out the SCD, read the book "Breaking the Vicious Cycle" by Elaine Gottschall. The book is probably at your local library, or you can order it from your book store. There is also tons and tons of free online information and many cook books written to comply with this approach. My 16 year old son follows this diet faithfully and we are believers.

You said she is currently in a flare? Has your doctor mentioned the possibility of a liquid diet to calm things down? This is a studied and proven approach to dealing with flares. Our pediatric GI did NOT share this information with us. I learned it right here on this forum. My son utilized it during a mini-flare and it completely got things under control and he then continued with the SCD. (I don't think it would be advised to do it while on prednisone, though, due to the extreme hunger factor. Ask her GI...although ours wasn't supportive, possibly because he is a pediatric GI and they're even more tightly bound by protocols requiring drug management, imo...)

Good luck to you, kelliej, and welcome to the forum but sorry you have to be here! I will keep your daughter in my prayers! It's tough to be a teen with CD....
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/9/2008 10:45 AM (GMT -7)   
Hi again and I forgot to add my welcome . A nutrionist is a great idea I had a very good one when I was in the hospital. The statement of "easy to chew, easy to Digest"" made sense to me and I have followed the low roughage diet since. Chicken, white bread, minced meats, fish, potatoes , veggies cooked to very soft,white rice,cheese,pancakes,french toast ,lasagna, banana's or soft cooked fruit. I do have things like turnip that I stay away from so there might be a few foods that she has problems with. Also trying small amounts of foods she is not sure of helps.

I definitely stay away from: nuts, popcorn, whole wheat breads,brown rice,peppers,raw hard veggies and fruits . Hope this helps some for now chew food really well is also helpful.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/9/2008 11:03 AM (GMT -7)   
Thanks so much for the information I will look into the Makers Diet and the SCD diet. This is a great source of support and information!!!!!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/9/2008 12:37 PM (GMT -7)   
Even without meds anxiety and depression can occur with this DD because of the embarassment associated with having accidents in our pants and the need to dash off to the toilet in the middle of anything, this disease takes total control of us so it's no wonder at some point we likely all will deal with anxiety/depression with having this disease...it happend to me even without being on oral RX used to treat this disease...the only way I was able to bring myself out of the depression was regular daily exercise and when my symptoms got better so did my anxiety, but unfortunately I still have some minor anxiety that I don't think will ever go completely away.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/9/2008 12:50 PM (GMT -7)   
exposive d doesn't do anything to improve your mental health that is for sure.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/9/2008 4:10 PM (GMT -7)   
Prednisone has given me panic attacks before. It will go away once she under 20 mg of pred most likely. Panic attacks can be pretty brutal. And then there is depression/anger as you are tapering. Pred messes up my mind pretty badly.. i think that is the hardest aspect of the drug to deal with. The arthritis thing may be caused by prednisone or chrons.. it does a number on my joints and muscles as I am tapering down. What dosage is she on? I know i start feeling more like myself once I am down to 10 mg. 
 
If she is having a hard time with the flare and the prednisone isn't really helping, then it sounds like her next step is onto the immunosupressors such as imuran or 6mp.  I needed 6mp to get me off of prednisone in a bad flare a few years back.. and its hopefully helping me get off prednisone this time.

Vin


UC since age 22, now 27.  Several huge flares since then.  3/4 colon diseased. 
 
Currently tapering prednisone(10 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/9/2008 5:06 PM (GMT -7)   
Hey- she is on 60 mg. I know that is not that much but she is down close to 100 lbs. The arthritis is associated with the crohns. She actually has had back and joint pain long before she was diagnosed with the crohns. This is the second time she has been on the prednisone. I swore the last time she was on it I would never let her take it again because it messed with her emotions so bad---but---you do what you have to. I am no stranger to it either---I have many autoimmune deseases (now thankfully under control) and have spent close to 12 years on and off prednisone. It really is a miracle drug with nasty side affects! The doctors are going to start her on a new drug--not sure of the name--but they had to do blood work to see how she metabolized it. Does this sound familiar? thanks for responding

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/9/2008 7:28 PM (GMT -7)   
Yes the metabolising thing is usually Imuran or 6mp. unfortunatley those drugs can take from 1-4 months to really start working. 60 mg of pred is a pretty high dosage. Even at 30 mg my head is pretty screwy. Since she is on a high dosage now, it will probably take her at least 2-3 months anyway to wean off that level. They will probably drop her to 50 mg in 5-7 days.... and then on 5 mg every 5-7 days. The critical area is usually around the 10-20 mg range at which point she will be getting back to her normal cortisol levels and at then you will know if the 6mp is kicking in or not. If its not, she will be back to flaring pretty bad(assuming the pred has taken care of it initially). If not, then they will probably try remicade or humira at least to get the flare under control quickly.

Everytime I am on pred, i swear it will be my last time! But thats just because I forgot how sick I can actually get. Being on pred is quite bad..but being sick is quite a bit worse.

Vin
UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum. 
 
Currently tapering prednisone(12.5 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.  


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 11/9/2008 7:56 PM (GMT -7)   
I feel for your daughter. I've developed anxiety since I was diagnosed and just started therapy to get it under control. I think it's especially hard for young girls (I'm 20, was diagnosed at 18, but couldn't imagine dealing with it much younger) since it's such a hard disease to explain to others and really affects your social situations. I'm going to my boyfriend's fraternity's social event on Wednesday (the first time I'll be out in ages) and I'm definitely nervous/anxious about the whole thing. I've also lost touch with some good friends since I just can't go out and do the college-y things I used to be able to do. Also, when I was on pred, my face blew up and I started eating like a linebacker--I was probably the most self conscious when I was on that medication.

I think seeing a nutritionist will be a HUGE help, and as her symptoms improve then her anxiety will as well. For me, no wheat was the key, but everyone is different. Is she a candidate for a treatment like Remicade or Humira which might aid her arthritis as well?
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 11/9/2008 8:43 PM (GMT -7)   
Have you tried finding either/and a therapist or psychiatrist? Support groups also help tremendously. If she could be around others her age in this condition it would really help. I'm sure having a supportive and caring mother like you really helps as well. I know I wouldn't have been able to get through as well as I did without my mother's help.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 11/9/2008 9:32 PM (GMT -7)   

Welcome!  I am impressed you found this so fast.  Took me years to find this resource and I am so thankful.  First off, as a mother I am feeling for you to watch this and deal with it.  You may want to find her a place she can ask questions and vent her frustrations.  (not sure if there is an age limit here) Its great to be able to ask even the most basic questions.  My holistic/nutritional doctors are convinced that Crohns is related if not caused by food allgeries.  a very large percentage of Crohns patients have food allergies.  most insurance wont cover the blood test, but many offices will over a reduced cash copay.  Its very helpful, that way you are for sure staying away from foods that are a problem.  My experience has been that wheat and dairy naturally cause problems is just about everyone, they just dont really know it.  I just started this diet 3 months ago, along with supplements, and my labs are the best they have ever been.  They also are doing a "leaky gut" test on me this week.  This is a drink that tests the permiability of the intestine.  Many with GI issues dont absorb what they should and do absorb some things they shouldnt.  They also told me to stick with foods that are closest to their original form (not processed).  In terms of fruits and veggies, they are always easier during a flare up if they are cooked, canned, soft, etc.  Since she already has the arthristis diagnosed (which happens with many people eventually bc its an autoimmune disease as well) I would ask the nutritionist about adding glucosamine.  It will help both problems.  They have it in powders, Monavie products have it, and many others.

The hardest part of this disease is that it is one that is MANAGED, not cured.  Sometimes you can do everything right and it will still persist out of no where.  That will be frustrating for both your daughter and your family.  Also, your dr will be critical to your progress.  If you are not ecstatic about your GI, keep interviewing them until you find one.  I have gone through several to find one that will honor my desire to be preventive and use natural methods, as well as realize there is still a need for RX sometimes. 

You will always find lots of support here!  And you can search for your topics first to see if anyone has already asked your questions (which likley they will have!!!)

Good luck!  Keep up posted.


Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!  No surgeries yet.  Tried Mp6-gave me joint pain/tried remicade-gave me pneumonia


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/10/2008 5:17 PM (GMT -7)   
thsnks so much for the information and support. This really is a great place. mkl 11 I hope you have a great time on Wednesday!!!!! It was nice to hear from someone close to my daughters age. We are seeing a therapist to help with this. I have also looked into a support group but there are none in my area (that I have been able to find) We have to go about an hour away for a pediatric GI but I think he is good. Today he just put her on 500mg (3x day) of Metronidazole. Does anyone have any info on this? Thanks!!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/11/2008 1:01 PM (GMT -7)   
Hi Kellie I will bump this forward as I have no experience with that med. I will say that 60 mgsof pred. is a high dose and that it is probably causing alot of her problems emotionally. It does as mentioned get better as we lower our dosage slowly which is the way to lower if a person has been on it more then a few days. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/11/2008 1:58 PM (GMT -7)   
I am so glad you found us and sorry you are here. my heart always goes out to parents who have sick kids. I was lucky to be the sick one in my house! there is much to learn at first, so keep asking questions to us and to the docs. as for diet, you will hear varied answers. docs tend to recommend low res, which is helpful for not adding more irritation to a sore gut. some of us have found great luck with the different diets mentioned above or cutting out gluten (as I have done) or milk.
mostly try not to panic and know that the first few months are just darn hard...no way around that...but often things settle down from there once meds begin to work, etc.
a big hug to you! yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/11/2008 2:52 PM (GMT -7)   
Hi Kelliej and welcome to Healingwell. As you can see we have alot kind and supportive people on this board. I have had Crohns disease for over 33 years. I was diagnosed at age 18. Luckily for me, I had already graduated from high school at that point, so didn't have to deal with the pressures she is having too. I just wanted to share that after all these years with Crohns, I just developed anxiety related to Crohns this past year. I think I may have had it before, but never recognized it for what it was. A couple of things really helped me. 1) I started to see a therapist, and 2) my family doc prescribed a fast acting lose dose anxiety medication, Xanax. Thru therapy and with the help of the medication, I am now able to head off the anxiety and stop it in its tracks. Many of us also suffer with Depression. This disease is life changing and its no wonder we get depressed with the ugliness of this disease. Not something you can really talk to your friends about! I know there is a site called "Teens with Crohns Disease" that she might be able to join, to speak with young people like herself living with this ugly disease. But please feel free to ask us any questions at all, we all understand what she is going thru.

As for diet, many have found success with the SCD and Maker's Diets. These are very restrictive diets and you do have to follow them to the letter, so it might be hard for her at first to do this diet. I like gachrons eat a Low Residue diet. Like gachrons said its easy to chew and easy to digest. You might google it to get some ideas for foods to eat or avoid.

Again welcome, and we look forward to hearing more from you both.

God Bless,
Gail *Nanners*
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.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 11/11/2008 5:05 PM (GMT -7)   
HI,

I have a daughter who has a chronic illness. It began when she was 18 years old. She does not have chrons but her disease caused her to go blind.

I just wanted to let you know that the teens with chron' site is: http://pages.prodigy.net/mattgreen/

Take care, having a sick child is hard on a parent. Hang in there.

Donnaeil

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 11/11/2008 8:11 PM (GMT -7)   
kelliej said...
thsnks so much for the information and support. This really is a great place. mkl 11 I hope you have a great time on Wednesday!!!!! It was nice to hear from someone close to my daughters age. We are seeing a therapist to help with this. I have also looked into a support group but there are none in my area (that I have been able to find) We have to go about an hour away for a pediatric GI but I think he is good. Today he just put her on 500mg (3x day) of Metronidazole. Does anyone have any info on this? Thanks!!
Metronidazole is an antibiotic.   I am suprised shes not on cipro as well.  While on the anti-biotics, i'd recommend some probiotics as well to replace what the antibiotics are going to wipe out.
 
Vin
UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum. 
 
Currently tapering prednisone(12.5 mg from 80 mg).  Also just starting 6mp again(75 mg) and lialda.  

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