• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Confused...

N

netsy

I was recently diagnosed with CD after 6 months tooing and frowing from the doctors and losing over a stone and a half in weight. My partner has been extremely supportive and my own doctor has too. Am a little less confused after visiting my Crohns liason officer (who is outstanding btw). Considering this only affects 1 in 10,000 people am sure they all must live in Staffordshire! Its surprising how many of your so called friends and work colleagues suddenly overnight inherit their medical degrees.lol. I would greatly appreciate any help or advice from anyone who has CD as I'm only just wearing in my Learner plates on this one.

Kind Regards

Netsy
 
scottmyster

scottmyster

HI nesty, welcome to forum, i have had crohn's for over 21 years now. and in remission for 15 years. it all depends how severe your crohn's is right now. or it could be moderate hopefully moderate. you can live a normal live outside of crohn's. it will take sometime to get use to it. but it can be controlled by meds and sometimes by diet alone. Just take notice of what you eat see and how it effects you. make a diary of the foods that make you miserable and the foods that don't. I know it's a pain in the butt lol. but you can do it. i got all the confidence in you. but, if you have any questions please feel free to contact me by this site or you can post more threads and get answers by the forum members here they are a great group of family and friends and great well of knowledge,and again welcome to forum. best wishes.

scott
 
Grumbletum

Grumbletum

Hi Netsy. I'm sorry to hear you have CD too, but I'm glad you found us here and that you are getting good support :) I'm a bit of a noobie too and it's been a big learning curve.
Have a surf around and make yourself at home.
 
A

*AJ*

Welcome!

It will all be a lot to take in at moment but I hope you get the right medication/ support etc for you and feel better soon =)

AJxx
 
N

netsy

Hiya Scott, Thanks for your kind words of encouragement. My partner got me a diary to put the goodies and baddies of foods in and I must start filling that in. Its mild to moderate atm and am on prednisolone and mesalizine and seems to be working ok tbh. Take the occasional paracetemol when I get stressed at work (work in customer services to the building trade). Thanks again, nice to read positive and light hearted humour (I was going to title mine "pain in the a**) but my partner advised me not to.lol
Take care
Netsy
 
KWud

KWud

Welcome to the forum Netsy :) There's loads of info on here and the folk are fantastically supportive :)

I remember feeling very down when I was first diagnosed, it can be quite daunting, but knowledge is power so have a look around.

Paula
x
 
xJillx

xJillx

Your Story Forum Monitor
Hi Netsy and welcome! Yes, it's amazing the advice you'll get from your friends and family. I sometimes get very frustrated when they offer advice that couldn't be worse (when I complain of joint pain, my mom still tries to tell me 2 Advil won't hurt), but I try to understand that they are just trying to help.

I am glad your new treatment seems to be helping, and I hope you continue to improve.
 
N

netsy

Thanks to everyone for all your help and encouragement on my recent findings. This website wasn't referred to me and I came across it by accident. Its the best thing I've done so far is to register here. Thanks again :)
 
W

WhatTheHeckHappened?

netsy said:
I was recently diagnosed with CD after 6 months tooing and frowing from the doctors and losing over a stone and a half in weight. My partner has been extremely supportive and my own doctor has too. Am a little less confused after visiting my Crohns liason officer (who is outstanding btw). Considering this only affects 1 in 10,000 people am sure they all must live in Staffordshire! Its surprising how many of your so called friends and work colleagues suddenly overnight inherit their medical degrees.lol. I would greatly appreciate any help or advice from anyone who has CD as I'm only just wearing in my Learner plates on this one.

Kind Regards

Netsy
Click to expand...
Your story sounds like mine. I went to a lot of Doctors, then ended up in emergency surgery July 5th 2011, resection and biopsy, now a week ago I found out I have Chrons, nice huh, I was sick for 3 months and noone helped me other then sending me for tests and never getting back to me. I had to find out in an ER that I was not simply inagining this. I was told that I was about to die, I was a skeleton by then too, the surgeon cancelled other surgeries and rushed me in because my bowel was about to pop.
Since my surgery I have gained a couple pounds, I'm now 120 lbs, was 160 last March. So thats 40 lbs in a few months, my appointment for my next test was July 27th 2011, if I'd waited, I wouldn't be here. I can understand what you mean about going back and forth. It really is scarey, I get info from a lot of people but its always different, Everyone tells you to avoid this and eat that, take this or avoid that but they contradict eachother so I don't know what to do either.
I hope that you can get information in your country thats more helpful then I can get here. If you do, please pass on what you can, I think most of us are sick of learning everything the hard way....Thanks :)
 
scottmyster

scottmyster

HI what the heck, i can help with the diet idea, just a the bottom of this page there a crohn's disease diet plan by dr.Dahlman. just click the link button if it doesn't show up just move the arrow it's there. you click the link and give them your email address and they will send you a confirmation email just click the link in your email for confirmation and they will confirm it and they will send you a pdf file(book) make sure you have adobe reader. i hope this helps. it helped me and opened my eyes a little to get a better handle on things and diet. best wishes

scott
 
N

netsy

Sorry to hear your diagnosis took so long and that you were so poorly before it was realised. Thanks to having a good doctor and being pushy towards the hospital I was sorted quite quickly to be honest. Mine is mild to moderate CD so am lucky really. I keep saying that I've got CD because the big man up there is telling me to slow down a bit.lol. You'll find your own diet likes and dislikes..your stomach will tell you the no no's quite quickly and I've started keeping a food diary. Good luck, keep in touch and take care
 
W

WhatTheHeckHappened?

Thank you Scott and Netsy
When I first found this forum, I was expecting to see a few people on here maybe a handful but there are a lot. I am going to read the diet plan that you mentioned, thank you. Have you found any foods that helped you?
I know a few that I have to avoid, there must be some that make people feel better too. I want to gain back some weight but its harder then I thought. I've always been trying to lose weight, now I find it harder to gain, LOL

I have the body I had at 13, my husband is diabetic and needs to lose a few pounds, so its frustrating at meal times, he eats salad that I can't (I used to love salad) and I eat all the things that he's not suposed to eat. Its a good thing that we both have a sense of humour. Thank you and take care :) I hope you have better days ahead then you've had.

I liked your idea of the Big Guy telling you to slow down. I always felt like he was trying to get me, ha ha... It was 39 when I met my husband, I had bad relationships and a horrible marriage and divorce but a wonderful kid :) Then I finally met my best friend and now that we are in the perfect relationship we both got hit with medical problems. This all happened after we met.

My brother divorced and now married a wonderful person too, now he has been diagnosed with sleep apnia and she found out last month that has diabetes like my husband has. My mother shakes her head she is in her 60's and keeps saying how she is suposed to be the one with medical problems, ha ha, she calls the house her little "hospital" LOL

You have mild CD, thats good, I'm taking antibiotics right now, and when the 3 months are over (I was told to take them for 3 months) I'm hoping that everything will be alright, one doctor in the hospital said that he thinks I might have it mild and might not need meds, I hope he's right but I'm going to see a specialist soon and find out. Meds or not I just don't ever want to face another surgery. Thats my goal, to never be there again :)
I hope that you feel better and your life is unrestricted...I hate it that everywhere I go is based on how close a bathroom is LOL Do you have that problem too? is it just part of CD or can you get back to almost normal? I don't have any pain,but I visit the bathroom so often in a day that I might as well move in there, set up a tv maybe, a nice little cot to sleep in, LOL,

Its disgusting, everyone knows where I'm going when I stand up during a meal, then when you come back you sure don't feel like eating anymore, I hope that that changes soon, then theres the fear of not being able to go, I hope the GI can give me something that stops the runs but doesn't constipate, thats what happened before I ended up in the hospital, I couldn't go, I was bloated and thought I was going to explode, this was for weeks, so I guess frequent trips to the bathroom is a lot better then that. Is there an in between with Chron

Netsy, I'm happy to hear that it can be mild, thats encouraging, you probably are good at controlling it, its nice to be that way, you control it and it doesn't control you :) Take Care and I hope that it keeps getting better for you.
Penny
 
N

netsy

WhatTheHeckHappened? said:
Thank you Scott and Netsy
When I first found this forum, I was expecting to see a few people on here maybe a handful but there are a lot. I am going to read the diet plan that you mentioned, thank you. Have you found any foods that helped you?
I know a few that I have to avoid, there must be some that make people feel better too. I want to gain back some weight but its harder then I thought. I've always been trying to lose weight, now I find it harder to gain, LOL

I have the body I had at 13, my husband is diabetic and needs to lose a few pounds, so its frustrating at meal times, he eats salad that I can't (I used to love salad) and I eat all the things that he's not suposed to eat. Its a good thing that we both have a sense of humour. Thank you and take care :) I hope you have better days ahead then you've had.

I liked your idea of the Big Guy telling you to slow down. I always felt like he was trying to get me, ha ha... It was 39 when I met my husband, I had bad relationships and a horrible marriage and divorce but a wonderful kid :) Then I finally met my best friend and now that we are in the perfect relationship we both got hit with medical problems. This all happened after we met.

My brother divorced and now married a wonderful person too, now he has been diagnosed with sleep apnia and she found out last month that has diabetes like my husband has. My mother shakes her head she is in her 60's and keeps saying how she is suposed to be the one with medical problems, ha ha, she calls the house her little "hospital" LOL

You have mild CD, thats good, I'm taking antibiotics right now, and when the 3 months are over (I was told to take them for 3 months) I'm hoping that everything will be alright, one doctor in the hospital said that he thinks I might have it mild and might not need meds, I hope he's right but I'm going to see a specialist soon and find out. Meds or not I just don't ever want to face another surgery. Thats my goal, to never be there again :)
I hope that you feel better and your life is unrestricted...I hate it that everywhere I go is based on how close a bathroom is LOL Do you have that problem too? is it just part of CD or can you get back to almost normal? I don't have any pain,but I visit the bathroom so often in a day that I might as well move in there, set up a tv maybe, a nice little cot to sleep in, LOL,

Its disgusting, everyone knows where I'm going when I stand up during a meal, then when you come back you sure don't feel like eating anymore, I hope that that changes soon, then theres the fear of not being able to go, I hope the GI can give me something that stops the runs but doesn't constipate, thats what happened before I ended up in the hospital, I couldn't go, I was bloated and thought I was going to explode, this was for weeks, so I guess frequent trips to the bathroom is a lot better then that. Is there an in between with Chron

Netsy, I'm happy to hear that it can be mild, thats encouraging, you probably are good at controlling it, its nice to be that way, you control it and it doesn't control you :) Take Care and I hope that it keeps getting better for you.
Penny
Click to expand...
Dear Penny,

For 6 months I was in and out of bathroom approx 12 times a day. Lost nearly 2 stone (which tbh I could have done with losing anyway) but made me feel lethargic, little appetite as I knew I'd be back in the loo within the hour and just generally felt drained. I was only diagnosed a month ago and am very grateful its only mild to moderate. Coffee and anything fried really sets me off and I still have my L plates on as regards to controlling this nasty disorder. However I am on 6 x 400mg of Mesalazine a day which I spread out (2 with breakfast, 1 lunch, 1 tea and 2 an hour before bed), and also on prednisolone (down to 3 a day now from 8 - reduced 1 tablet a day each week). This is just to reduce the inflammation and the mesalazine to keep the inflammation down. I have been to see a Crohns liason officer who told me "Eat, take your tablets, drink and be merry". Its all in the positive attitude and making sure that when your body tells you to rest, that you do exactly that. I too am lucky with a very helpful, loving and supporting partner (the guy has golden you know wots as far as I'm concerned) which is more of a help than anything atm. I hope you keep in touch, take it easy, keep smiling and am here if you ever need a chat from a fellow newbie :)
Jeanette
Aka Netsy
 
You must log in or register to reply here.
Top