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ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 11/14/2007 3:22 PM (GMT -7)   
     I'm new to this whole thing, for a long time I wanted to cope, shut in my feelings and not talk to anyone about how i feel.. I actually would get very annoyed when people asked me too many questions if I wasn't in the mood to talk.. But, I was diagnosed in sept '03 and about every six months I have a flare of some sort.  Recently for about 2 months I have the classic symptoms of a flair, the gas, bloating, pain, weightloss, and constant bathroom visits.. and to add to that every morning I throw up nothing but stomach acid because it has all come out the other end..I dont know what is causing it and the acid reflux medicine doesn't work so it can't be heart burn, or ulcers. 
     So I have an appointment with my doctor again..I've been on entocort for 2 weeks and things aren't getting better for me, the entocort has stopped the nausea, and pain, but im still having the diarhea, . No matter what diet I do or what I try and do to stay healthy it seems when I'm finally feeling back to my normal and ok.. Boom and on comes the cramping, diarrhea and 30 runs to the bathroom throughout the day..
     My mom has insisted on going with me to the doctor tomorrow because she just doesn't feel I'm asking any questions... She right.. Every time I go in and its the lets start prednisone or go back on entocort I just shut down.. I don't want to talk to my doctor, I just want to be left alone to cry and get over it, suck it up and take the medicine.. but this time it hasn't stoped the diarhea and now shes mad at me...
     So when I try and explain to her how im feeling.. all she can relate to is my emotions of frustration of not getting it fixed and the embarrasement of having to constantly worry what the people at work are thinking when I say " I need to run to the bathroom, I'll be right back".. She doesn't understand my pain and that my girgling in my stomach IS NOT LIKE HERS!!!.. Mine is like a small child running through my intestines kicking me along the way.. It doesn't always hurt but I know when he runs low enough I better be near a restroom.. How do I get her to understand this!?!?!?!  My mom has become a strong believer that everything is in your head.. If you are feeling bad just think positively and you will be all better.. This doesn't make it go away.. just puts is off for a later time when its gonna really kick me..
 
Im Just frustrated that I cant get it under control and that I might have to go to the next step of medicine, I fear all the side effects.. the steroids and asacol have already caused my hips to pop and my joints to hurt.. I at one time was even loosing some hair.. i just don't want to have anymore problems and just wish it would stay undercontrol...
23 y/o/f Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Asacol 6 400mg tabs aday
Entecort 9mg aday
 
Live Laugh Love, Live by this and you can fight anything!!


Sway_79
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/14/2007 4:14 PM (GMT -7)   
DDR,

<hugs> First off, yes it is hard to explain, even to doctors, our symptoms at first. We are scared that it might be "that bad". When I first got diagnosed, they thought I was anorexic or bulimic. How frustrating that was. It's embarrassing to talk about what we go through on a daily basis. The fear of the "ewww...gross"...or the "it's all in your head...you look fine...you're not sick".

PLEASE, for your own health, be honest with your doctor. That is the only way you can be on the right medicines for YOU. As you see, most of us are on "cocktails" (multiple drugs). Write it on a piece of paper and just hand it to your doc if you feel that you can't verbalize it. I am so open about it anymore, it doesn't bother me. But I do remember the times when I felt like you. And I wasn't getting the treatment I needed, because I would just shut down and agree to take whatever the dr. thought I needed. So many years wasted....that I might have felt better if I would have just swallowed my pride and been honest about what was going on with my body.

Hopefully, the dr. can explain your situation better to your mother, that it's not in your head. I understand how hard it is when family members don't understand, or think you're making it up, or doing it for attention. My mom still asks me what I ate wrong when I get a flare. I just laugh and tell her that it doesn't matter what I eat. (My sister has IBS, so she gets us confused a lot). I'm sure your mother means well. My mom went through a phase where she thought she "gave" CD to me...that it was her fault. She had to go to my GI with me and actually listen to him explain everything before she started believing that she didn't "give" this to me, or do anything wrong in her pregnancy to cause this. We can't make other people understand. I wish we could. Sometimes, they will never understand it, and that's just something I accept. Perhaps your mom is in the same situation....or in denial that there is something "that wrong" with you. Disease is a big word that scares people. Perhaps it is her way of dealing with it. It's unfortunate for you.

As for the next steps of treatment, it is a hard road. It's not easy. Most of our meds come with lovely additional side effects (which usually require another pill to treat). Think about this....remission. That's the important part. Be honest with yourself, your doctor. Let them know that it is their job to improve your quality of life. They can't cure us, but they can help us live better lives. My doctors changed their attitudes when I said that. Perhaps it will work for you as well.

Best of luck. We're always here for you to vent.

Peace,
~Sway

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/14/2007 5:54 PM (GMT -7)   
I feel for you honey, but just know you're not alone when you come here....
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/14/2007 6:34 PM (GMT -7)   
Hi I know it is not easy to deal with side effects of the meds and decisions aren't easy maybe your Mom will be able to help I know I felt like I shut down some when pred is mentioned but I am still on it not doing great at 20 mgs but getting things more solid now.Sometimes for me it can be foods that trigger the pain so I have a list of things I avoid. I guess being a Mom myself I can only tell you that perhaps for her she is doing her best in dealing with the CD not easy for anyone. The bigger meds can give us concern but they do help lots of people. I have had times when my stomach gets upset in the am too .My reflux is mostly at night when I am sleeping, or trying to. One thing for sure is that you do need to get this under control so you will feel better. Wishing you the Best and let us know how things go for you. lol gail

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 11/14/2007 6:46 PM (GMT -7)   
DDR,
I'm sorry it's so hard right now. I really do feel for you -- trying to work this all out and feeling so bad. I really suggest the idea (posted above by sway) of writing down your symptoms. Sometimes just seeing it in writing can help you and your doctor see what is really happening.

Keep a simple log -- how many times to the bathroom. how many times bm, D, etc. Use a simple system for noting when it's "urgent" or the level of pain, cramping you are having.

When we talk to the doctor we tend to say "well, I'm dealing with it" or "yesterday it seemed a little better." But, when it's cold hard facts on the paper, like for example: "Over the last week, I went to the bathroom about 18 times a day and it was crampy D with urgency. It woke me up at night three times. I also had two accidents" -- it's easier to talk about, deal with and address with medication or other treatment.

Good luck!
Official dx September 2007.
Medications: 6 mp, Pentasa, Prednisone (tapering), Prilosec, Synthroid.
Supplements: probiotics, calcium, vitamin C, vitamin E and a multi-vitamin.
History of hypothyroid (dx 2004), and gall bladder surgery (1997).
44 years old; single mom to three wonderful kids, ages 9 to 15.


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 11/14/2007 11:29 PM (GMT -7)   

ddr.  I am sorry that this is happening to you...  Yes it is VERY frustrating especially when people that you love and that love you just don't "get" it.  I definately agree about having things on paper.  That way you have hard facts and it cannot be disputed when you see your GI

<virtual hug> 


Newbie - 35 yrs old Diagnosed: 08/03/07
Meds:
Asacol 3x day
Imuran 50MG 3 x day
Lamictal 125 MG/day for bioloar II


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 11/15/2007 1:02 AM (GMT -7)   
Hi DDR!!!
 
Please understand that you are not alone in this.  I am 34 years old, and my mother still asks me what did I eat wrong!  She is also a strong believer that if you have a possitive attitude you will feel better, she doesn't really understand the situation, or maybe she doesn't want to understand because she feels frustrated that she can't "fix" it for me, like when I was a child and I had a flu for a couple of days.  I believe this is totally normal for mothers to think like that, I am a mother myself, and when I think that something bad might happen to my children, I push the thought away, because it's easier for me to feel that my children are ok.
 
Now, regarding your doctor visits, you must be honest and talk about your symptoms and your feelings, otherwise not even the best doctor in the world can't help you.  Your doctor is not the only one who makes decisions about you, you have to be part of it, and work with him so together you can find the best treatment that will lead you to a long remission.  It is not easy, none of us likes to talk about our embarassing symptoms, but it's the only way that your doctor will have an idea of what you are going through.
 
Please remeremind yourself that you are so much more that just a diagnosis, CD is only a part of your life, and your whole life.
 
Greek and warm hugs,
Christina tongue

athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 11/15/2007 1:06 AM (GMT -7)   
Sorry, wrong typing, I ment to say  CD is only a part of your life, NOT your whole life

malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 11/15/2007 2:38 AM (GMT -7)   
p.s. I totally know what you mean about the "you need to remain positive talk." =0|

Don't know if you got this either, but I get the "this is your fault because you pushed yourself talk and if I would just "rest" that everything will be fine." I know that if we DO rest, things will heal quickly but things won't be "fine"--we will just have to look at the world a different way and learn to live with CD.

Make sure to advocate for yourself too. Like so many others on here have said, the best docs can't help you if you can't tell them REALLY what's up. I think it is good too that your mom can hear from the doc what is going on with you because sometimes we can show them literature, we can tell them the exact same things that a doc would say, but cause it's coming from a 3rd party it clicks better.

one more thing...... I also can empathize that you are afraid of the next step of meds. I can tell you in my experience I was terrified and would have rather NOT gone on imuran from what I read about it. I literally tried everything not to get on it because I wanted to give the asacol a little more time but when I got to the point where things didn't feel like I was getting better and I was actually regressing, I called the doc and said, "Put me on it. I don't care anymore, I give up-- just make me better."

There ARE side effects to everything (I lost hair on asacol AND some on imuran but it seems to have stopped now) and you do have to weigh the options of everything but if they suggest something to see if THAT would work and you're at a loss, maybe you can think a bit more about it and try the next step. I am fortunate in that my little leap of faith worked out and made me feel a lot better but some others have to try 2 and 3 more times till they get their right combo down.


That's why I appreciate this site SOOOOOOOOO much because it's nice to hear that we're all going through the same things in our own ways.... I don't know what I would have done if I didn't bump into here.

Take Care
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds:
Asacol 3x day
Imuran 50MG 3 x day
Lamictal 125 MG/day for bioloar II

Post Edited (malakai) : 11/15/2007 2:49:17 AM (GMT-7)


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 11/15/2007 9:17 AM (GMT -7)   
Thank you all for your advice.. I have put together a list of some questions I really feel its time I ask my doctor. I am going to work on more of my trigger foods. I know spicy things and seeds of anysort, pork and fast food are definate no no's.. so I avoid them.. But, I'm still tring to figure out what else does it..

My appointment is at 4 pm.. so we will see what my next step is going to be..
23 year old married female Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Asacol 6 400mg tabs aday
Entecort 9mg aday
 
Live Laugh Love, Live by this and you can fight anything!!


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 11/15/2007 11:15 AM (GMT -7)   
probably the hardest part emotionally for me as I have been sick is dealing with people's "advice." I am committed now to telling them when they are making it harder on me, hurting my feelings, or not listening.
when my daughter was about 3, she said "don't tell me anything I don't want to hear." I am going with that as my motto! :)
welcome and take care, yp
48 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. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 11/15/2007 11:16 AM (GMT -7)   
Best of luck, ddr.  It is overwhelming, being ill and so young and everyone in your life just wants you to be healthy and you don't know how to make that happen!  I am totally going through that too.  It seems like you are staying tough, though (man, I can't imagine hurling every morning, what a horrible thing - I am so sorry about that).  It is definitely a different mindset to adjust to, being a long-term patient.  Let us know how your doc's appointment goes.

Co-moderator - IBS Forum


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 11/15/2007 3:16 PM (GMT -7)   
I'm 48 years old and I was just on the phone last night with my 77year old mother who was sobbing because she thinks she caused my Crohn's disease!!! She was diagnosed with lung cancer about 15 months ago, and it was shortly after that that I got my first anemia episode and started getting sick. She thinks that the stress of my worrying about her caused my illness. I explained everything I could about genetics, environment, etc. but she isn't able to move off the guilt. It can be very tiring to deal with her, especially when I don't feel well, but I have two teen-agers of my own who I love more than life itself, and I know she just loves me and wants to take the pain away...parenting Never ends!
If you think it would be helpful to bring your mom to the doc, then do so, but it's time for you to be selfish and do what is best for you. I tend to be too assertive and ask the doctor zillions of questions. I had my husband come with me one time, but although he was trying to be supportive, he was asking questions that I already knew the answers to, and I felt like he was taking up my "air time," so I couldn't ask what I needed. I do best with my notebook of questions all on my own. But I'm an old lady compared to you! Maybe you should bring the most supportive person you know, and s/he can be your spokesperson. Don't be afraid to get your questions answered--that's why the docs make the big bucks! Good Luck, and hope you are better soon.
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 11/16/2007 6:56 AM (GMT -7)   
ok so I made it through the visit.. My mom still doesn't fully understand my issues, but I think she's getting there. She asked my doctor multiple times if my other issues (back pain, hip pain, numb feeling legs) was caused by the crohns and everytime my doc said yes she just looked at me confused.. but I think she's getting more that it can cause other issues.  But what she doesnt  get is that no matter how positive I do think (i am very optimistict about life) it can not make some of the pain go away.. Distractions work great and I explained to her thats why i work 40+ hours a week and take 3 classes in college.. It keeps me busy and gives me reason to move in the morning.. She is slowly getting there.
 
Well next steps, we are gonna repeat the colonoscopy to see why the pills arn't working a 100%.. then we are gonna do some form of upper gi scope (endoscope/pillcam) to make sure its not in the small bowel or gastric area (causing the nausea)... then from there we will probably start treatment with Humira (which scares the living hell our of me to have to stick a needle in my leg(i have a HUGE needle phobia)--my husband already told me he doesn't want to hurt me but he will do it because he wants me healthy-- thank the lord for him)  ne-ways today they call to schedule the colonoscopy and we will go from there.. im staying on entocort and Asacol for now..
 
I just pray that im not jumping to quick and no matter what it works..
23 year old married female Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Asacol 6 400mg tabs aday
Entecort 9mg aday
 
Live Laugh Love, Live by this and you can fight anything!!


clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 11/16/2007 8:03 AM (GMT -7)   
I understand how you feel also. I know that I am nervous whenI do go to the doctor and have to describe in detail all of my symptoms, but I make sure I am as specific as I can be with my symptoms and how I am feeling so that he or she can make the best decision possible based upon what I tell him/her.
In regards to diet, I still don't know a lot of the foods that my body will let me have or not have because I can eat something one day and be fine and eat it the same thing the next day and not have it agree with my system. Just part of the nature of this disease I guess and how it affects everyone differently.
I am also grateful that I found this forum and all the great people that are a part of it who can share in ways that others who do not have CD cannot relate to.
Bob
47 years old
Dx 3/07 Moderate Crohn's in terminal ileum-Probably had it for years earlier
Rx Prednisone initially for 8 weeks-40mg/day then tapered down to 0
    Currently on Pentasa-2000mg/day


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/16/2007 5:20 PM (GMT -7)   
Hi Glad you have some sort of plan worked out and that your Mom is better qualified in understanding your condition. Sounds like you will be better able to make deicions based on your new test. Your Hubby sounds great and supportive. Wishing you the Best and let us know how things are going with you.I do the low roughage diet and it helps with not getting pains and I stay away from corn ,seeds, nuts, whole wheat bread ,raw veggies I cook them till really soft, I don't eat fresh fruit but go for soft like apple sauce and banana, I don't eat steaks or chops but eat minced meats and fish,ham,chicken. You will find your good foods I did and that is why I liked the low roughage diet it was a lot easier to find the foods that bother meand to really enjoy eating again when I tried new foods I just added small amounts and only tried them like one new food aweek that way I knew if it bothered me. Hope this helps you lol gail

ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 11/16/2007 8:18 PM (GMT -7)   
My hubby has been pretty awesome.. Well they are setting me up for the follow up colonoscopy for November 30.. thats really soon.. but good. and then i should start humira after that.. i still havent decided the upper gi think.. i really dont want them to find anything else.. im ready to just settle with the colon issue and try and get better quick...
23 year old married female Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Asacol 6 400mg tabs aday
Entecort 9mg aday
 
Live Laugh Love, Live by this and you can fight anything!!

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