• 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.

New to the whole deal

First of all, I want to thank anyone who responds or gives any type of advice. And also to the creator, admin and everyone else on this site for making it seem like a very useful tool. I know I feel isolated with my Crohn's, so it's nice knowing that I'll have a whole community to lean on. Thank you all!!!!

Well here's my little story. I was diagnosed with Crohn's disease in May. The days leading to my hospitalization were horrible. I had a shooting pain in my back that basically crippled me. It took 20 minutes to get out of bed to get to the bathroom, and another 20 to get off the pot. My wife took me into the ER and without doing any tests whatsoever, the doctor told me I was constipated and told me to eat more fiber and mag citrate. Well, that was about the worst thing that could have happened to me. I was into a different ER the next night. I was instantly hospitalized. I live in a small town, 3xxx people, with a very small hospital. After three days of laying in a bed there were no improvements. So my wife and I decided it was time to transfer hospitals and find out what was wrong. Well I was diagnosed with Crohn's disease almost instantly upon arrival. I was released 3 days later and haven't been dealing with it since.

I have a wife, 9 y/o step daughter, 2 y/o daughter and a 3 month old daughter. My wife is very supportive and loving, but doesn't fully understand what it's like. She gets mad that I don't want to go out and do things like I used to. I don't want to go out drinking or even go on a dinner and a movie date. She also doesn't understand when I'm up all night with stomach aches and pains. I just find it very hard to maintain the disease and a "normal" family life. I feel i have adapted but still need to make improvements. I'm not expecting a bunch of replies to this, just more or less wanting to get some stuff off my chest. Thank you.
 
Hello and welcome!

This is a great place to get all the support and advice from those dealing with it :)
Starting off with Crohn's is really life changing, because you have to learn how your body reacts differently with different foods, different scenarios all different things!
Have you found out some foods that you cannot tolerate atall? Because there is no point in me telling you what I cannot eat because everybody with Crohn's have completely different things they cannot deal with it :) Its just finding your feet with that and it will all become easier from there!

I was 15 when I first got diagnosed and my dad has crohns, so my mam knew the symptoms immediately! I'm 19 now and off my medication as the medication just didn't agree and I feel fine.. But when I first got Crohn's, if I was a few hours late in taking my meds I suffered badly, so don't try it yet :)
And what is the reason you don't want to go out and do things? Tiredness or maybe the frustration of having to go toilet in public?
Don't pull yourself away from normality and daily routines too much as this doesn't help, and then having to deal with the stress of going out to do something doesn't help! Just relax and go for a walk now and again and soon you will really feel the difference in just getting out..

My dad was fitted with a colostomy bag and he will have that for life now so he just really hates to go out in public as he is afraid he won't be in a place that he has the facilities to empty the bag.. But he just got over the fear and went out and started training soccer again :)

And those without Crohn's don't realise that the pain we deal with isn't anything like being constipated or having diarrhoea for those without sensitive bowels, and I know that can be frustrating to get across but DON'T NOT STRESS :)

Also drinking and smoking is a no no! Your colon doesn't need things like that :) And it needs oxygen so smoking will not help.. Not saying a smoker or a drinker just saying! :)

Hope your well, and it does get better! :)
 
Mainly the foods that cause me trouble are green beans, beans in general i guess and heavily seeded fruits. As for the not wanting to go out thing, its more or less an embarrassment issue. The last thing I want to do at a friends house is have to use the facilities stink up the joint. I know, I know, that seems really pathetic, but its the way I feel.
 
Well if you keep the foods that cause you trouble out of your diet you will be grand, it takes time for your digestive system to settle down.. Oh i know, the last thing I ever wanted to do was go to my friends house and have a sleepover but it does take time to know how your digestive system works and ye can then work together :) No no no, I never said you were pathetic!! :( its your way of dealing with it, so you do that! But I just son't want it to be harder for you in the long run!
 
Im waiting to be diagnosed with IBD after a colonoscopy yesterday. As imodium no longer work I dont eat if I have to go out anywhere, I wait til I get back which could be late in the day, not good I know. Also I feel scared to eat some days as cant face all the cramps and pains that I get within an hour of eating.
I dont know what foods make mine better or worse, bread and pasta dont help, rice and hard boiled eggs seem to be the best at the moment but then another day Im ok.
I hope you feel better in yourself, youve lost confidence and need support, hopefully things will pick up and you will get out and about again.
 

Spooky1

Well-known member
Location
South Northants
hi,

yes, crohns is lifestyle changing. i rarely go out due to needing loo and being on a liquid diet via a pump system. its utterly dull but thats crohns!! i hope your wife starts to understand you soon. its not easy and managing pain is awful. i'm up days and nights too. i try and keep one light on to try and put nights into nighttime and days into daytime. however, i also sleep during the day ( i just can't help it). i get so fatigued.

i think we all need understanding but probably this is the best place to get that understanding. at least people are here for us.

good luck
 

xJillx

Your Story Forum Monitor
Hi hedge and welcome! You need to give yourself some time. You really were just diagnosed. It's going to take time to accept you have Crohn's. I was very down in the dumps the first few months after diagnosis. I didn't want to go out much either. Things will get better, and a lot of it depends on you feeling better.

What medication are you currently taking? Has it helped reduce symptoms? Perhaps you need to reevaluate your treatment plan.
 

David

Co-Founder
Location
Naples, Florida
Hi Hedge,

Are you currently under the care of a GI? Do they have you on any medications or have they outlined a treatment plan yet?

I'm glad you found your way here. We're here for you :)

*hugs*
 
Thanks for the kind words all of you, it means more than you could ever know. I do have a GI doctor, and I really feel comfortable with him. I feel he has gone the extra mile to help me. I am currently on remicade and starting methotrexate in December. My biggest fear right now is that I passed it onto my two girls.
 
You have nothing to worry about! My dad does have crohn's but when I was diagnose they said that it was like a one in a million chance that any of his children would get it and of course that was me! :) but my two brothers are perfectly fine, so don't worry about them getting it because it really is unlikely. My cousin has it and none of his family like mam or dad have it so its not genetic! :)
hope your doing much better!

:D
 
My GI told me not to worry about it as well, but it's just something that is in the back of my head. The hardest part for me is to find out what I can and can't eat. I've pretty much been avoiding the main foods that are on the "DO NOT EAT" list. I tried to eat fresh green beans this summer and that was about the worst mistake I've ever made.
 
Hey, and welcome to the forum! I am sure you will find help here, I certainly did. :) IBD is life changing and difficult, but it is great that you're in the hands of a good GI. It's difficult first time round, being diagnosed takes so long! They give you all sorts of tablets that don't help and mislead advice. I guess it isn't there fault though, they need to narrow down the possibilities, sometimes by trial and error; much like finding out what you can eat! When you are diagnosed though they know what to give you straight away, so keep that for peace of mind should it come back.

As for food, there is a sticky in I think the diet and supplement forum which might be able to help you find some easier to stomach foods. It is still trial and error though, there is a chance it might not go well with you and there are some foods which you might be able to tolerate others can't. I guess it's more of a guideline. :) It's good to know certain safe foods.

I know it may be hard to, but stay positive. Your family may not understand, but give them time, and let them research it. It helps so much. It's not all gloomy, remission will give you the best feeling. Some people can go about like they don't even have it during remission.

Hope you feel better soon! And see you around the forums.
 
Yeah I know it will always be in the back of your head. If you are worried just keep an eye on them and if they have complaints go get them tested, it will put your mind at ease! But until then don't worry friend :)
I find with my diet, i have my good and bad days. I could one thing and be fine then eat it the next day and regret it! But i think its eat little and often does the trick, have your 3/4 main meals of the day and between them have a little snack. A cracker or something that you like to eat. I really found that did the trick, especially when I wasn't able eat my main meals. I just had little and often and it worked and plenty of water.
Your only new to this and it does take time

:)
 
My GI told me not to worry about it as well, but it's just something that is in the back of my head. The hardest part for me is to find out what I can and can't eat. I've pretty much been avoiding the main foods that are on the "DO NOT EAT" list. I tried to eat fresh green beans this summer and that was about the worst mistake I've ever made.
Hi Hedge,
Its tought to deal with and figure out. Worst thing you can do when your system is acting up is eat raw anything... all steamed veggies, lean meat, small amount and eat more often. Over eating and too much fiber is not good. Its seems as though a flair up can happen in one day, and take a week to calm down. Hang in there!
 
Hang in there! I have read tons of stuff on Crohns and digestive issues, and one thing people dont realize is anxiety and depression can happen. Our gut has almost like its own nervous system, hence the term "butterflies in your stomach". Its really true. I had to take a leave from work thinking I was going nuts, and it was before I was diagnosed with Crohns. I was a mess. After I got my Crohns under controll, I have not had any of those issues. And Im a very strong type A personallity, so it was very out of the normal for me to have emotional issues. Get the book, Restoring your Digestive Health, it really goes into detail on all this stuff. Hang in there! Your not alone...
 

Tesscorm

Moderator
Staff member
Hi Hedge,

I'm sorry to hear about all your troubles! It's overwhelming trying to deal with a diagnosis, new treatments, pains, etc., etc. My son was also diagnosed in May and suddenly a new life is thrown at you and you have no choice but to cope totally unprepared!

But, it does get easier! I believe people sometimes use low residue or liquid diets when they are in a flare (don't have experience in this but I'm sure if you use the 'search' feature you'll find some info). As others have mentioned, there doesn't seem to be any specific diet that works for all, however, my son's dietitian did tell him to avoid seeds (sunflower, sesame, tomato, etc.), nuts (peanut butter is okay, just not pieces of nuts), popcorn/corn and skins (like apple peels, potato skins).

As far as socializing, when you're feeling a bit better, perhaps you can invite friends over to your place instead of going out... You will be more comfortable at home and the distraction may make you feel a bit better.

Good luck, I hope you're feeling better soon!
 

Terriernut

Moderator
Hedge, it's alot to take in. It's alot to have to deal with. Dusty posted about Grieving, it's a post I would recommend you have a look at.

It may throw you a few curve balls, but life with Crohns's isnt the worst thing in the world to happen. It may seem like it, until you begin to deal with it and know what works and what doesnt. When I spent alot of time in hospital I had the opportunity to see people alot worse than me. And that changed my perspective on life completely.

Crohns is manageable for most of us. It isnt going to stop me, and I sure hope it doesnt stop you! We have good days, and we have some friggin AWFUL days. But you keep going. One day at a time. I work full time, have grandkids, dogs, life, stress, worries, well, life in general. I am not going to let Crohn's win, and you know what....I bet you wont either!
:rosette2:
 
Welcome to the forum!!! I joined a few days ago and it has been awesome!! I was just diagnosed with CD a month ago.

I'm in the middle of a flare up right now and a change in my diet has been key!! I used to eat a lot of fast food and junk food. Over the past month I have been eating a lot of yogurt, PB and J's, ham and turkey sandwiches on white bread, carrots, bananas, a lot of seafood like salmon and tuna, steak (less fatty steaks), cottage cheese, a lot of baked potatoes (don't eat the skin), iceberg lettuce salads.

Foods that I avoid: greasy foods, fried foods, anything with seeds, fiber foods, all nuts, popcorn( I heard it's the worst), fruit with skin( apples are fine if you peel them).

I have found that I have to force myself to stop eating at times because I know it will hurt a few hours later. I also try to eat at the same times everyday so I can kind of predict when I will have to go to the bathroom. For me consistency has been key.

My girl friend has had a tough time dealing with my diagnoses but she has been getting better with dealing with it everyday. It is tough getting up every hour in the middle of the night and farting so much, lol. I try to leave the room if I can sense a fart coming. Laughing about it has helped A LOT!!!

Good luck with everything!! Things will get easier with time!
 
Hi & Welcome Hedge.

Getting diagnosed is tough to deal with although it is normally kept under control with meds and regular visits to your GI specialist.
Glad you found this forum. There are Heep's of helpful and knowledgeable peeps on here that either have or are caring for someone with Crohns.
Don't get hung up on it, take each day as it comes and I'm sure all will be fine. Hey you have a good reason to be tired & grumpy at least!

@Shawn - Love your spirit. Hope things start settling for you also. It's a pain not being able to eat what you want. All the tasty stuff usually upsets my guts too. Surprised how you can eat steaks without any pain after it though. I struggle digesting red meat and end up getting bloated and constipated on occasions.

Sandy
 
Thanks Sandy,
I stick mainly to really good cuts of steak like Filet Mignon :thumleft:. I do make sure I chew it A LOT!!! I did struggle with pork chops, I didn't chew the meat enough I think. But fish and other seafood is my new go to food. I ate some fried calamari and had no problems, :).
 
Fine life your leading there Shawn. I may have to try. Yes it's the chewing a lot that puts me off after years of acid reflux erroding my teeth! Hmm well that and fresh orange which I have now stopped after realising it has been upsetting me all those years. Oh and I read it somewhere on here.

Cheers
 

Crohn's 35

Inactive Account
Hedge :welcome: I am so sorry you are going through so much and being the man of the house it is hard. You need to get on medications asap. No one should suffer this way and maybe giving your bowels a rest. Ensure or Isopure is a good way to keep the nutrients in and avoid your bowels from digesting. Another help is using digestive enzymes, and using probiotics can help. Some find metamucle helps but could cause gas upset. I am so sorry your wife isnt understanding but as I know in my past relationships sometimes they just dont ever get it and I now have a wonderful and supportive husband.

Getting a good book about crohns could help your wife or better yet, let her read some of these posts. Spouses are our lifelines and with them it is alot harder.

Keep us posted on what is going on. :hang:
 
Been so down since Saturday, violent cramps even if I havent eaten and then when I have its been awful, even foods that havent bothered me have. Woke up Tuesday with a mouth full of ulcers and have had really sore, stingy eyes since Sunday (?) Had colonoscopy last eek and rang for results of biopsies to be told my file is with the surgical team and the doctor needs to sign them off...? It showed, erythema, inflammation at caecum, patchy congestion, granularity and mucosa. So glad something was found but with imodium not working, even lots of them Im at my wits end til I see the GI. Cancelled a trip to family in the States as cant travel like this. Spent 9 hours in the loo of a 747 2 1/2 years ago and not going though that again. Lost 1 1/2 stone since beg Sept and ache and feel tired all the time. Just want a diagnosis :(
 
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