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73monte
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Date Joined Mar 2007
Total Posts : 1494
   Posted 12/10/2008 7:43 PM (GMT -7)   
It's been almost 2 years since my daughter was diagnosed with Crohn's/TI. During that time, she has been very fortunate, and done very well considering all the initial fears. For about the last week, she has developed stomach pain, pretty much right in the centre of her abdomen, naval area as well, it's pretty much constant. Every time she eats, she feels discomfort. Her bowels seem to be regular enough. Has anyone experienced this kind of thing? Is this Crohns related? Does this warrant a trip to the Doctor. Are there certain foods that might help? Ever since her diagnosis, I've pretty much been worried to death. I don't show it at all, and am very careful not to cause any paranoia about her eating or the future, as I want her to have a healthy positive outlook on things, but the truth is I worry to the point that it's debilitating. Is this normal for a parent? Thanks for any support. THis forum has been a tremondous help.
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.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 12/10/2008 8:41 PM (GMT -7)   
It's so hard to say what is "normal" pain and what needs to be checked by a doc... ultimately it's all up to our minds - how much we can handle and the quality of life involved. If your daughter's stomach pain is significantly lessening her quality of life - then she should probably try and figure out what the deal is.

I went through similar pains earlier this year, and while it's just a shot in the dark - I found that supplementing the acid in my stomach killed the pain almost immediately. For some reason most people have "too much" acid, but some of us crohnies don't have enough. I started taking something my alternative doc gave me called HCL at first, but then I found I could replace the expensive supplement with raw unfiltered apple cider vinegar. I just take two teaspoons in the morning (chug w/water and honey), and I keep the pain away for most of the day. Like I said, it's a shot in the dark, but it's a cheap one if you just need something to "try" while you and your daughter decide what path to take.

Also, monte- you need to take a deep breath because you're doing an awesome job supporting your daughter. That said, don't think that she can't sense your worry... that stuff is contagious, I swear. You have to be positive and balanced for your daughter to be positive and balanced. You have to think of your daughter as being the awesome person that she is, and that she just happens to have this stupid disease... you can't think of the disease first all the time and let it consume you! Even through the worst of days I'm still glad that I'm here and rolling along... your daughter probably feels similar... don't feel guilty or responsible or any other nonsense... It's normal for you to worry as a parent, but it sounds like you're doing just fine!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/11/2008 6:31 AM (GMT -7)   
Hi Monte it is hard to give a suggestion but if it continues perhaps her meds need adjusting. You need to get some help with this for yourself and I am not sure how debillating this is for you and what is going on. If you want to talk more about it with us please do. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/11/2008 7:44 AM (GMT -7)   
I take the safe route and run her symptoms by her doc. It could be something minor, but it can't hurt to get it checked out.

As for your worry, while it is normal for a parent to worry, I think your fears are a little over the top. I have had this disease since I was 18 and am now 51 years old. This disease is not a death sentence. Even though I have lived with this disease for over 33 years, it has not stopped me from having a normal life. I am married, have 3 grown daughters, five grandbabies, worked at the same job for 19 years, take vacations with my husband, I have a life. Yes there are downtimes, but there are still many good times to be had too. I have found that having this disease, has actually made me a stronger and more compassionate person.

Hugs,
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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/11/2008 4:53 PM (GMT -7)   
I would really like to Thank-You all for these helpful responses. I did speak to her GI today, and she feels that the Crohn's may becoming active, but will need to do some bloodwork  after the weekend. In the meantime, she has increased her Pentasa to 3000mgs a day. I know there are many suffering considerably worse, and that perhaps I do sound a bit "over the top" as was suggested. The fact that she's done so well for that last 2 years, has led to some wishful thinking, like she might be cured or something like that. I suppose as a parent, that it's some sort of defense mechanism. It's certainly a let down, but hopefully, they will get things under control once again, and my daughter can return to her busy lifestyle. 
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.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 12/11/2008 5:18 PM (GMT -7)   
You sound like a really good mum, certainly no one would think u were over the top, You are a caring mum. Because I have had crohns now for over 21 years its always in the back of my mind that one of my daughters may get it. So far so good for them but Im sure I would be the same as you are if it were one of my girls. I hope she gets relief from the pain soon. Keep us posted.
andorable

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/11/2008 7:42 PM (GMT -7)   

<<<You sound like a really good mum>>>

I know "mum's" can be especially caring, but I'm the Dad. Thanks for the caring post though, much appreciated.

When I came home from work tonight, my daughter wanted to eat something, so I made her some scrambled eggs and toast. After a couple of bites, she began having really bad stomach pain. It's going to be a very long weekend. 


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.


paintedsongs
Regular Member


Date Joined Jul 2005
Total Posts : 207
   Posted 12/11/2008 7:53 PM (GMT -7)   
 How awesome of you to be on this site getting info for your daughter ! Go Dad ! I have a suggestion, if the eggs and tst made her tummy hurt, this is what I have learned to do, its no fun, but I suggest switching to a liquid diet for a few days, soup, jello, broth, tea... Sorry to hear that your daughter is having the stomach pain. I know how much it hurts and I found the liquid diet can be helpful to let things rest .. keep us posted..
29 Year old Female. Dx with Crohns 2005. Currently take Imuran 50 mg. Had 3 remicade infusions which put me in remission.
Dx with Pyoderma Gangrenosum Nov '07. Used Prednisone and 3 more infusions to close up the PG.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/11/2008 8:33 PM (GMT -7)   
Thank-You for reply and vote of confidence. I was going to do exactly what you suggested, and go with a liquid diet until Monday. The thing is that anything she injests, causes quite alot of pain within minutes, solid or liquid. I just told my son, that we have to cancel his birthday plans for Saturday, so now I have him crying, and my daughter is fighting back the tears from pain. Can hardly wait for Christmas.
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.


CrohnsCrone
Regular Member


Date Joined Jun 2008
Total Posts : 25
   Posted 12/11/2008 9:25 PM (GMT -7)   
I was 13 when I was diagnosed (although I probably had been suffering from the disease for years before that) and had major surgery at that time. I am now 64 and still going strong! Hope that eases your worries a bit. :-)

By the way, my vote is to pass it by the doctor. Better to find out it's nothing that to ignore something that might need treatment.

All the best.

Shann-
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/12/2008 12:22 AM (GMT -7)   
oh boy... yeah. well your always going to have pain with crohns.. and its very possible shes going back into a flare. im only 17.. so from a teens aspect i can feel her pain. i flare up every year. i was diagnosed at 13 too i believe. im not on the pentasa anymore.. they put me on a 6mp or mercaptopurine. its nicer than pentasa because with that you had to take so many of those huge pills. but yes. definately take her to get blood drawn.. and it also could be her just now developing food issues. sometimes you cant eat dairy, but i doubt that if she has had it for 2 years now.. anyway hope i helped a little at least. Also, ask the gasteroenterologist (sp) about the 6MP its much nicer than the pentasa.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/12/2008 10:19 AM (GMT -7)   

Once again, Thank-You for your responses, and taking the time to help. I did talk to the clinic today, and we're going in for bloodwork and possibly and x-ray on Monday. That should tell us what's going on. I'm a little worried about a change in medication, if the Pentasa isn't doing it anymore. I know the initial weeks on Prednisone worked incredibly well, but I'm not sure if it's good to go back on that again. I'm not familiar with the side effects of 6MP, but have heard about pancreatitis. I guess we'll just have to wait it out and see what happens Monday.


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.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/12/2008 12:50 PM (GMT -7)   
If she needs to go on a short bout of prednisone whilst they figure it out,  it may be the best thing for her to do. I have the same symptoms when my crohn's is flaring. Try ensure- it is liquid and non-dairy. Mashed potatoes are ok too. She is lucky to have you.

Shann-
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/12/2008 1:11 PM (GMT -7)   
6MP isnt that bad of a drug.. it may cause issues in the future though..
most of the side effects from that drug arent that bad.. just google side effects of mercaptopurine(6MP)
if she is going into a flare.. then tell her to remember to chew her food up really really good. it hurts alot less going down. and also dont eat much acidic things like oranges grapefruit as it may irritate the intestines more than they already are, since there are already ulcers in the intestines during a flare, you dont want acidic foods on them.. it would just irritate them more. but if she is going into a flare.. she will have to be on prednisone for a while until it gets back under control. Also.. does she get her blood regularly checked?

Shann-
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/12/2008 1:12 PM (GMT -7)   
6MP isnt that bad of a drug.. it may cause issues in the future though..
most of the side effects from that drug arent that bad.. just google side effects of mercaptopurine(6MP)
if she is going into a flare.. then tell her to remember to chew her food up really really good. it hurts alot less going down. and also dont eat much acidic things like oranges grapefruit as it may irritate the intestines more than they already are, since there are already ulcers in the intestines during a flare, you dont want acidic foods on them.. it would just irritate them more. but if she is going into a flare.. she will have to be on prednisone for a while until it gets back under control. Also.. does she get her blood regularly checked?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/12/2008 2:46 PM (GMT -7)   
Hi 73Monte first off I want to say I meant nothing bad by the "over the top" comment. What I was trying to say was that she can have a normal life with this disease, once you get it under control. I just recently flared myself and have been back on the Pred for 3 days now. I already feel much better and think your daughter will too. Maybe you could ask him to put her on a short dose (I am only taking it for about 4 weeks). I saw a good definition about pred and the immune suppressants like 6 mp/Imuran. Steroids act like nuclear bombs and the completely shut down the entire immune system temporarily and the immune suppressants are like laser guided missiles and strike right at the diseased area. When you research 6mp on line, please do remember that the side effects generally are for folks on much higher doses than what we take. I think if she needs to go on a stronger med, I would give the 6mp a try first. I would recommend though that she also take Folic Acid with it. It does cause your hair to shed (not much) and the Folic Acid helps to stop that. But I think it is a good drug and think I myself might be starting it soon too. Good luck on Monday, hope she gets feeling better soon.
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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/12/2008 2:54 PM (GMT -7)   

Thanks guys, I'll keep her on a bland diet for now.  She says she's hungry, but is a bit afraid to eat. Any other food suggestions? She has had bloodwork done a few months ago. The results were extemely good, with no signs of inflammation. In the last 2 years, the only problems have been, a 2 week bout of constipation a few months ago, in which she had no pain, and still had a good appetite. After a couple of days of Senekot, it passed and all seemed normal again. Other than that, she has never stopped being Anemic, and thus has been taking Palafer all along. Even with that she is usually tired. I could go on and on, I'm trying not to. I don't want to dump on anyone. I really appreciate that people like yourselves, and many that are worse off, have taken the time to offer support.

 

 


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 12/12/2008 6:32 PM (GMT -7)   
Hi You know we are all family here and you can just let it all out and talk about things we understand.I know even we as people who have crohn's feel a little helpless at times and it is good to get some comfort and support .I remember your daughter from when you first came here.I hope your son has a happy birthday. You"ll get threw this . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/12/2008 8:07 PM (GMT -7)   

Hi Nanners,

No need to explain the "over the top" comment. There was no offense taken on my part at all. Actually, I AM over the top, and it's good that you pointed it out. It's a great analogy you give about the Prednisone being like a "nuclear bomb". I remember when my daughter was at her worst the first time around, and within days of being on the Prednisone, she was sailing. I just worry about the side effects of being on such a strong drug again. Is it okay to keep going on Prednisone everytime you need to re-gain remission? Anyway, Thanks again for taking the time.


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.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/12/2008 8:12 PM (GMT -7)   

Hi Gail,

I too remember when I first was scouring the internet for information about this disease, when I stumbled on this forum. I think you were likely one of the first to offer advise and concern. I notice that you reply to many that are coming here for the first time, usually totally despondent. It's great of you to take the time to do that, Thanks very much for all the support.


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 12/12/2008 9:00 PM (GMT -7)   
Concerning the prednisone, you obviously don't want to be on it for prolonged periods of time, but it's generally okay to start a short round of it and taper. My doctor will generally recommend between 10-20 mg and decreasing it by 5 mg per week. Of course you'll want to make sure your daughter is getting enough calcium since it does take its toll on the bones..
Anyway, it sounds like you have it under control. It's nice to see a caring parent like yourself..makes me miss my dad.

Ah, and one more thing my nurses told me when I was afraid to eat! It's better to get something in there so you might try ensure or boost. Broth, water, popsicles, jello, and so on are good too.

Let us know how everything goes. I'm hoping for the best so you'll be in my thoughts.
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.

"He who has a why to live for can bear with almost any how."


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 12/12/2008 10:59 PM (GMT -7)   
hey a few weeks ago i had simmilar pain in my tum,the instant i ate it wld hurt real bad,the docs thort it cld be gallstones etc but i tried some anti acid stuff and it seemed to help,i had damaged the lining of my stomach by not eating enough when i had my pills in the morning (i had started a new job so i wld only haf jelly in the morn so i dont haf to go running to the toilet while at wrk) im currently on 40mg of pred to keep things under control til my nxt scope,i find pred good and bad at the same time,good to keep my tum sorted but bad coz of the side effects.
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 12/12/2008 11:12 PM (GMT -7)   
also defintly go to ur doc,i find with this disease its better to be safe than sorry,even just making sure that anything you do is ok,must be hard for her being so young and hafing this disease,i struggle sometimes and im 21,i find the support of my mum critical,we tend to joke bout this disease makes it easier to cope with for me and her,i think if we didnt we would both be over whelmed,and shes been through alot with me and my bro (he had a brain tumor when he was 16 or something) he's ok now better than me but now she has me to deeal with :) nothing like having a giggle with your mum (or ur dad) before a MRI,I also found this site really helpful and if ur daughter needs some support adn encouragement or if shes feeling like shes the only one facing a problem with this disease this site can really help.
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/13/2008 6:25 AM (GMT -7)   

Hi Eva and LM,

You guys are so young, and obviously dealing with your own battles. Thanks for taking the time to offer help. 

For the last while, my daughter has been skipping breakfast alot too. Through the day she doesn't eat much as well. Maybe, that has caused some sort of irritation. If she does end up back on Prednisone, although I seem to remember the Doctor frowning on repeated bouts of it, I will ask about calcium, as that must be important as you indicated. 

 


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 12/13/2008 6:52 AM (GMT -7)   
Hi Monte does she like boost or ensure they would at least supplement a missed meal. Keep in touch on what the Dr. says and thank you for your kind words it is always good to be helpful and do you think that you might be having panic attacts. Have you talked to your Dr. about this. Good that xmas vacation is coming up and that will at least provide her with a break from school and be able to get some rest. If she is not able to do much and has constant pain pretty much threw the day and gets worse at night ,and this is continuing for awhile,then a trip to emerg would be a help. Could be she is just flaring a bit and will get better soon. Let us know what her Dr. says.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

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