First time in the forum and hoping for some advice

[ISL1409]

Hello,

First of all, English is my second language, so please excuse my mistakes

I have been diagnosed with Crohn's disease less that 6 months ago after and appendectomy. Mine is a strange one... Besides the one painful event which lead to my surgery, up until fairly recently I had no pain, no running to the bathroom, no nothing. Yet MRI results indicated I had an active (and severe) inflammation. Ater steroids I'm now on a 6-mp.

For the past month I feel a discomfort in my right lower abdomen, it's not pain exactly but annoying never the less. Now I get nauseous, tired and feel ny stomach blow up after every meal. I guess the symptoms caught up with me eventually (or at least some of them).

I think I'm having trouble accepting my diagnosis. Even more so since I had no symptoms for a long time. I can't seem to take care of my diet and eating habits - a part of me doesn't want the restriction and I'm angry about it.
More than anything I hate the attention - my husband, family and friends out of support and love look at my plate, wonder if they prepared anything I can eat and contemplating the best restaurant for me. I love them for it but it also highlights the fact I'm ill. In about a week I'm off to a vacation with my extended family and I dread the meal time - I feel it's a zero sum game: either I eat everything not taking notice of what is good or bad for me... or I become a huge fuss.

I know it's not like that... but I can't help feeling this way. I would appreciate any and all advice - especially on how to manage a diet while on vacation...

Thank you
ISL

 

[Jmrogers4]

Welcome to the forum.
The only advice I can give is it is all new to your family as well and in time they will hopefully quit bugging you about the eating. I know when my husband was diagnosed 20 years ago, we all worried about feeding or making something he could eat. Now with 2 of them in the family (my son was dx'd 3 years ago) while we make sure there is something to eat we don't worry about it too much as there is probably more they can eat then can not.
It takes time to get to find the right medicine, diet, etc to get you feeling better. The most important thing is to take care of yourself and eat what you can that won't make you feel bad then you are not able to enjoy the visit. Talk to your husband about running interference for you, this is what I do basically ask what is on the menu to make sure there is something you can eat and then tell everyone to leave it alone, you will eat what/when you can.
Try to go to restaurants with lots of variety and don't be afraid to ask for them to "customize" your meal.

 

[lmd2071]

Hello,
I'm curious to know how old you are because age plays a big role in the stages of Crohns.I've been on all the high dollar drugs.Remicade,Humira and finally Cimzia.The reason these meds did not work is because they do not get rid of scar tissue as everyone knows.So each med did what it could for me and the rest was up to good old bowel resection.I just had that job done on the 4th of December.Check this out,I had surgery in 2006 as well.The reason why I was back on the table so soon is because of the wrong doctor and the wrong procedure.This surgeon chose stricture plasty as a quick fix and it was only good for two years and I started the worse flare up that I ever could imagine.You want to try to avoid this for sure.I think that if you are young and can get with the right specialist,meaning GI's working only with patients suffering from IBD's your chances of a better life will increase vastly.I know we all dislike the steroids,I at times was on as much as 60 to 80mg for short periods of time.I think you might want to speak to your doctor to see if you could utilize the steroids as you need it to get rid of the distension.i also would go 2-3 days at times to get rid of the bloating.Also think about 2nd and 3rd opinions.

 

[Earnellzwifey]

Hi ISL1409 and welcome to the forum. I am sorry that you are having problems and right before vacation. I did not have problems with my family worrying about what I could eat because I have been having stomach issues for so many years prior to diagnosis, but I do not like to eat out in public much because I have to go straight to the bathroom after any meal.

I was in a major flair when I went of vacation a few months ago and was not able to eat much of anything. My advice to you would be to try and figure out any foods that might be a trigger for you and keep a diary of them. I know this might not be easy since your vacation is coming up. you might also want to look at some of the diets that others use and see if any of them might help keep your tummy under control. Here is a link to it:
http://www.crohnsforum.com/forumdisplay.php?f=17
I hope this helps.

 

[Josie23]

Hi
A quick reply from another newbie.
Suggestions about eating out - have an appetizer and dessert. This works for me because I have a very sweet tooth! Another idea came from a waitress at a restaurant we go to frequently - order from the children's menu.

Good luck.

 

[Earnellzwifey]

Josie23 that is a great idea. I have been eatting from the kiddie menu for years because I just do not have a big appetite.

Something else that I though about is make sure you now where the bathroom is if you suffer like me. I have to go within minutes of eatting so I always try to sit near the bathrooms and I carry a small bottle of air freshner in my purse or pocket. :stinks: :rof: