IBS has gotten the best of me.. help

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jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/13/2008 9:40 AM (GMT -7)   
I am 16 years old and have very severe IBS problems. I don't know anyone my age or around me that has the same problems as me, so it's hard for me to feel normal and not embarassed. ( i have had this problem for about 3 years now)
In the summer i went on a gluten free dairy free diet because I was getting really fed up with the pain taking over my summer. It didn't help at first but around august september I was doing a lot better. I was taking vitamins and trying to be very strict with my diet. Around december I was starting to get bad again.. and from there it went totally downhill. A dieticien at the hospital told me to go off that diet and add in the wheat, so I did. I also had an appointment with the pain team. who gave me a got new medication to help the nerve messages to my brain and whatnot and suggested acupuncture (which I am doing now). The first week I was feeling so positive and happy, and I was feeling pretty good. Feeling good for me is just not having any really bad pains. Then I had a bad episode the next week, and since then I have been worse than ever.. missing dance 3 weeks in a row, missing school. I don't know what to do.
I was wondering if anyone out there has tried that gluten free diet and noticed a big difference.. because i'm not sure if I should go back to that or not. If there are any other kids like me out there i would love to talk to you.. I feel terrible about my problem because my parents have to worry non stop, and it's hard on them seeing me so down and in pain all the time.
Anyone can answer to this, and suggest some things that might help.
thank you for listening
-jess

Post Edited (jrlm) : 4/30/2008 1:29:54 PM (GMT-6)


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/13/2008 10:56 AM (GMT -7)   
Hi Jess and welcome to the forum,
You're dealing with a lot at such a young age, but I know that you're not alone in your suffering...but I think teenagers are even more hesitant than other people to bring it up. IBS can be very socially isolating. I do understand where you're coming from about your parents and how you wish they didn't worry about you. Heck, I'm 28 and live across the country from my parents, and they still worry about it. This year I started not even telling them about my health because I knew they would feel helpless and that would make me feel worse about it!

Is pain your only symptom, or do you have bowel changes as well? Constipation, diarrhea, both?

I am not sure what to tell you about the dietary changes. I have never gone completely gluten free. There are some books out there such as "Eating Right for a Bad Gut," "Breaking the Vicious Cycle," among others, and they have helped many people. Did you find that once you went off the gluten-free diet, that is when your symptoms reappeared? Have you ever had any testing done on your gut to check for disorders such as celiac disease?

Take care and keep posting :)
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 4/13/2008 11:12 AM (GMT -7)   

You poor thing!  I'm so sorry you are having to deal with this at such a young age.  I was not much older than you the first time I experienced the pain and "embarrassment" of IBS symptoms.  We do have a few members on here who are young and in school, trying to manage their symptoms and still lead a full life.  It can be done!

I would first recommend the most important (and the hardest) thing to do:  CALM DOWN.  There is a direct connection between the amount of stress and emotional upset we experience and the intensity of symptoms.  Anxiety and stress are not the causes of IBS but they DO exasperate the situation.  Stop worrying about your parents.  As a mama myself, I can assure you that worrying is a parent's JOB.  And even if you pretend everything is fine to protect them from being concerned, a mama will always know when her child is not well.  So just give that one up!  Be grateful that your parents care about your condition.  We have a few young members here who complain that their parents don't take their symptoms seriously and they come to the forums for support from us. 

Embarrassment is always going to be part of IBS - unfortunately.  When you are dealing with physical problems that involve the bowels, everyone feels uncomfortable.  It's taken me almost 40 years to get over my fear of being "found out".  Now, I just tell everyone that asks that I have a digestive disorder.  Actually, you would be surprised how many people experience similar problems.  They estimate that 20 percent of the population has IBS.  That means that some of your classmates probably have it too.  Everyone is different and some experience more pain than others.  The symptoms change as well so what is bothering you right now may not cause problems five years from now.  This condition FORCES us to really pay attention to what we eat, how we live, and how we interact in the world.  In some respects, it makes us more aware than the average person who never has to think twice about how they treat their bodies.  That is not such a bad thing, huh?

about the gluten free thing:  it seems that if you've found something that worked for you in the past, you should stick with it.  Hate to say this but doctors are not always the most educated about IBS.  You will likely find more helpful and beneficial information from others with the disorder.  You will also learn more from your own experiments, eliminating certain foods, relying on others.  But remember that food is only one piece of the puzzle.  Keeping your stress level to a minimum, getting regular exercise, learning to laugh about the bodily functions that cause so much embarrassment, and taking good care of yourself are just as important.  Support from others with the condition is invaluable for me.  That's why I spend so much time here!

Much of your treatment and routine will also depend on the type of IBS you have.  If you lean toward Diarrhea, you may find this a bit easier to treat than if you lean toward constipation.  There are many foods and over the counter medicines that can keep you from having "episodes" when you are in class.  Constipation can be a bit trickier (and more painful) because you have to plan your day around BM's. When I get really "clogged", I will set aside two days of doing absolutely nothing while I purge my system with magnesium citrate, a strong and effective laxative. 

I am curious about the medicine you were given.  Acupuncture does seem to work for some people.  If you are getting relief from it, that's awesome!  Good luck to you!


jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/13/2008 12:46 PM (GMT -7)   
first, thanks guys for replying,.. i was excited to read haha.
and yeah, i have done all the tests needed .. from bloodwork to scope to barium both ways.. not fun, most of that was done last year and the year before when it startyed to get really serious. I am tested perfect for everything.. no sealiac or chrones, or any of that.
My problem does lean towards constipation.. especially withint he past 2 weeks. it sucks.. my mom just tries to get me to drink water and eat fiber and all of that. and it's very hard at school to handle everything. My symptoms are chronic abdominal pain associated to using the washroom, constipation,bloating, gas. I have got the book, eating for IBS by.. karen something. She has a site and all that and I am trying  to read that, and then the docotrs reccamended a different one that says different things, so it is hard to know what one to follow.
I am just curious.. about the pain that you have been in, because i have been in some really scarey scarey pain that does not seem normal at all.. and I always wonder if others get it that bad too. i mean sure i get the pains all the time but sometimes i get horrible episodes that can last up to an hour.. and its hard to explain to friends because they just don't know. i have wanted to call an ambulance about 10 times so far because of tghis pain that i feel i can not control.. like the pain is running through my whole body and i get in panic mode... anyone else get that?
thanks again guys for the suggestions
-jess

Normal
Regular Member


Date Joined Mar 2008
Total Posts : 263
   Posted 4/13/2008 1:50 PM (GMT -7)   
I am sorry to hear about your IBS. I have had pain so bad at night I thought I was going to have to call my DR. for pain meds. I went to the ER one time because of pain and swelling and they laughed at me and said I had gas. I was really upset. That was years ago before they really knew about IBS. DRs still do not know how to treat it alot. You are doing great researching and trying to help your Drs. Just make sure you check with them before you try new things. If your pain gets that bad I (as a mom and grandma :-) ) would call the Dr. if My child was in pain like that. Please tell your parents,thats what they are there for,to help you. That is what your Dr. is there for also. BIG THING RIGHT NOW is STOP FEELING BAD FOR OTHER PEOPLE THAT YOU FEEL BAD.Try to find a support group close to you and you nay find friends your age who also have IBS. Hang in there hon.

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/13/2008 7:13 PM (GMT -7)   
thank you.. and i know i have to stop feleing bad about for making my parents feel bad but i just don't like it when my mom gets so stressed over things. she is so bad with stress, and right now she is a mess. but i will try not to feel bad about it.
thanks for your support

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/13/2008 7:19 PM (GMT -7)   
and gutastrophe, the meds i am on are pregabalin and amitriptyline

Kimo
New Member


Date Joined Apr 2008
Total Posts : 18
   Posted 4/14/2008 1:32 AM (GMT -7)   

Jrlm,

I know how you feel. Im sorry to see someone so young with the same problems we are having. I cant even count how many times Ive thought about calling an ambulance cause my body felt so out of control with the gas and pressure build up. I have seen 2 different doctors and neither can tell me the root cause of my problem or how to stop it. Ive only had this feeling for the last 2 months and its taken over my life. It made me change ever aspect of my life to try and make the pain and unusual sensation I get with an episode go away. Dont feel like you are alone there are alot of us who understand what your going thru. This site alone has gave me a little glimmer of hope and an avenue to vent some frustration and seek advice from others going thru the same thing. The only thing I have found that helps me aliviate some gas pressure is to drink hot tea that I make with fresh ginger.  It helps me to belch enough to get to sllep at night. Take Care

 

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 4/14/2008 8:35 AM (GMT -7)   
jrlm said...
and gutastrophe, the meds i am on are pregabalin and amitriptyline
The first med appears to be an anti-convulsant?  Not sure what that is supposed to be doing for your IBS.  The other is an anti-depressant.  There is some evidence that these drugs help some people.  I've never found them beneficial but you may.  If you've only just started taking them, give it some time.  They usually take 6 weeks to take effect. 
Your mama is doing the right thing by loading you up with water.  You CAN'T drink TOO much water when you are C.  Doctors now believe that the primary reason people get clogged up is due to a lack of water.  Of course, many of these theories are only partly applicable to people with IBS.  For example, with C, very high amounts of fiber might actually cause more problems, especially if you are only going a few times a week.  Fiber supplements and high fiber foods extract moisture from the gut and if you are already constipated, this can be a problem.  Do you find that your BM's are hard to pass and do you strain to go?  If so, a stool softener may help you.  A diet devoid of all fat could be problematic as well.  For people with C, some fat in the daily menu is essential.  That's good fats!  Olive oil, flax seed oil, fish oil, are all good.  If you can stomach Castor oil, that would help as well.
As others have mentioned, I too have come very close to dialing 911 when in the midst of an IBS attack.  Doctors will say that trapped gas pain is sometimes the WORST pain a person can experience.  Please make sure you tell your parents when you feel this sick because there is always the chance it could be something else (gall bladder, appendix).  I know when my appendix ruptured at the age of 26, I blew it off thinking it was my ulcer/IBS and did not go to the ER until I had already gotten peritonitis.  That was a 16 day stay in the hospital during the Christmas holidays!  Not fun!
Good luck to you!

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/15/2008 3:37 PM (GMT -7)   
thank you guys for your support, i appreciate it and wish luck to all of you as well. we\re all in this together i guess

Miss G
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/29/2008 1:02 AM (GMT -7)   
Hi jrlm,

I got diagnosed with IBS last year after a couple of years of hell... I have tried most things under the sun but anything under the Western Medicine umbrella has only made things worse in the long term. I have however, started acupuncture and TCM (traditional chinese medicine) which involves taking a herbal formulation three times a day. The herbalist that I see has shown me the number of diagnosies available for the digestive system in TCM. When I told her I had been diagnosed with IBS she laughed and said that this diagnosis meant nothing - it was just a way for western medicine to put a name on something they knew nothing about that lumped many different digestive disorders under one name. TCM has dozens of different diagnosies based on the SPECIFIC symptoms of your digestive system. I am four months into the herbal treatment and I am actually getting better... forever.... as in, when I finish treatment and stop taking the herbs i WILL NOT GET SICK AGAIN. If you can find an experienced chinese herbalist near you, please do give it a try...

I hope something helps for you...

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 4/30/2008 12:27 PM (GMT -7)   

thats awesome miss G. im glad to hear that you are getting better!!

i am doing acupunture as well, so i am sort of ont he same route, but not with the medicines you were talking about. i am definitly going to mention this to someone. where do you go to get this acuupunture and the herbal medicine?

-jess


jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 5/2/2008 8:06 PM (GMT -7)   
thanks for the reply IBSHELP. I actually have just started to really workon the fiber the past week or so, and it hasn't really helped much. And i just started taking acacia in my water. What kind of fiber is soluble again? and im glad to hear that you are having a normal life. Hopefully that will be me sometime.. soon.

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 5/2/2008 9:35 PM (GMT -7)   
Anti-convulsants work on the nerve endings and are used frequently for pain. They calm the nerve endings. That is just one of the newer ones, similar to Neurontin. I can understand it being prescribed but have not heard of it used for IBS though it might not be the worst idea. They are prescribed off label for a variety of things.

Librartist
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/4/2008 1:35 PM (GMT -7)   
I have had alot of luck with MOTOFEN but unfortunately it looks like they are now taking it off the market. No reason given why.

jt80
Regular Member


Date Joined Sep 2007
Total Posts : 333
   Posted 5/10/2008 6:26 PM (GMT -7)   
HI jrlm,I'm sorry to hear that your having to deal with IBS at such a young age 16 I know it must be really hard on you.Even at 28 I feel I'm to young to be dealing with IBS I could never imagine having to deal with this in my teens,I'm happy that it happened to me later in my young adult life.I know how hard it must be dealing with this at 16 your just getting to experience life with things happening in your teenage years like going out and socializing with your peers it must get hard for you I really feel and have compassion for you.I hope things will get better for you and hope you'll get to enjoy your high school years with no symptoms bothering you.I will keep you in my prayers,and this is a great site to come and get support type down your feelings and get info to better aid you in bettering your health.Hey have you ever thought of working out I hear that keep your symptoms under control,like yoga I'm thinking of doing that myself and also bike riding,wishing you all the best and good health.

jrlm
Regular Member


Date Joined Apr 2008
Total Posts : 45
   Posted 5/11/2008 7:06 PM (GMT -7)   
thank you very much jtaurus. i appreciate your kindness and support.. and im sorry to hear about your problems. It really doesn't matter what age you have IBS. It is hard for me right now, but i am hoping it will get better. I am getting help with it although its not working to well. I think working out is a really good idea, and i might start doign it. I went to the gym last year, when I still had IBS but it wasn't as bad as it is now, and it was good.
thank you for the suggestion, and good luck wtih your IBS.
have you learned to deal with yours, or is it still in the way a lot?
 

jt80
Regular Member


Date Joined Sep 2007
Total Posts : 333
   Posted 5/12/2008 8:35 AM (GMT -7)   
Hi,I do have it somewhat under control try every chance to improve my digestive health to being healthy.I'm even trying yoga and bike riding everyday to keep my symptoms from acting up.
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