Crohn's Questions

[Chrismac]

I have a few questions......

Crohn's Disease..

1: When you guys are in remission do you ever have normal BM's? I don't know what remission looks like - not sure in the last few years I've ever been there. When I was a 16 and first diagnosed remission was normality.. but I've not had normality in the last 2 or 3 years. One BM will be solid, then the next an hour later will be really loose.

Thing is.. I'm going to my boyfriends parents house for 2 weeks. I'm SO scared of pooping in their bathroom when my poop is unpredictable with the potential loud and STINKY.

2: When you talk about diet - how did you come to that conclusion? I can't work out (apart from caffeine) what is worse and what is good.. this is because I have cramps everyday now, have done since last year and because of the BM changing so much anyway it makes it hard.
But I know diet will help.. I just don't know where to start!

Any wisdom hugely appreciated! I am so glad there's a whole host of people here that understand fully.. it helps.

 

[Chrismac]

Oh.. one I forgot..

3: For the girls - I've heard a couple of things about periods causing flares.. Do you find that to be true?

 

[Astra]

Hiya Christine


For me, remission is when I have no infammation and I'm not in pain, but I still have loose or watery BMs, sometimes they're firmer, sometimes D.
I can empathise with the visit to boyfriends house, I usually open the window, and waft with a towel! or strike a match, that works to soak up smells, good luck!
re; diet, I would start on the Low Residue Diet, you can find this on the diet section on forum, basically LRD is bland, boring food, what I call white foods, like white bread, white rice, chicken, fish, if i'm flaring I go on this, no coloured foods, it works! Then keep a food diary, and eliminate what triggers D, then re introduce foods back in one by one. There is also the Specific Carb Diet, SCD, find this on the forum too.
Yes, I've always believed that symptoms are worse during periods, so I had a hysterectomy, and it dramatically reduced my symptoms and inflammation, cos everything was 'glued' together! And I had endometriosis too! I don't think they cause flares, just exacerbate them by cramping and contracting, and I always got severe D during periods.
What meds are you on now?
hope you feel better soon
xxx

 

[Dustin]

Hi Chrismac, one thing I would recommend for you if you can find it for your stay at your boyfriend's, is something called "Just one drop" or something like that - it can be found somewhere on this forum (just can't remember where at the moment). You put a drop of it in the toilet before having a BM, and it eliminates the smell. I haven't tried it, but I have been told by many people that it works.

Good health and best of luck.

 

[Crohn's 35]

Oh.. one I forgot..

3: For the girls - I've heard a couple of things about periods causing flares.. Do you find that to be true?

Yep, I have had bad ones probably longer than you have been born. Still dealing with that.

 

[Crohn's 35]

Hi Chrismac, one thing I would recommend for you if you can find it for your stay at your boyfriend's, is something called "Just one drop" or something like that - it can be found somewhere on this forum (just can't remember where at the moment). You put a drop of it in the toilet before having a BM, and it eliminates the smell. I haven't tried it, but I have been told by many people that it works.

Good health and best of luck.

Ha, I have two bottles, they are tiny and discreet, not sure if they have it in the UK tho. I am sure you can get it online. A drop or two in the toilet BEFORE you go in the water, really makes a huge difference!

 

[Chrismac]

Really?? That stuff would save SO much worry and stress in my life! I had no idea such stuff existed! I wonder if it can be shipped in a week... That's when I'm visiting the boyfriend's parents and will REALLY need it. Wow.. seriously, if I get my hands on that it will lift such a weight from my shoulders.

And the periods - good to know.. things are always a little looser then. Which means it should be cleared up by next week.

Luckily my boyfriend is very understanding and knows all about it.. but not really the thing to talk to the parents about.

Seriously - if I have that Just a Drop stuff in my pocket my mum will LOVE me whenever I visit her house.........

 

[MapleLeafGirl]

1) I am still trying to figure out what remission is as well. I have had periods of time with relatively normal bowel movements, but then I have a "bad day" and they are not so normal. I think this might be remission for me. It could be like everything else with this disease and it is different for everyone.

2) Caffeine is a problem for me too. Red meat is another. I am working on a food diary and I think that is going to help me with sorting out what works and doesn't work for me.

3) Periods definitely make mine worse. That's usually how I can tell it's coming.

 

[Chrismac]

Oh, the red meat also for me... which sucks because steak is one of my favourite foods!!

I definitely need to start a food diary.. but how do you even go about doing that?? Do you normally write down what you eat and then just if it has an effect?

 

[MapleLeafGirl]

I am trying to write down what I eat every day plus how I felt, how many BMs, any other symptoms. My theory is that something might not jump out right way, but I may be able to go back over the book in a month or so and say hmm, isn't that interesting, everytime I eat _____ I have 10 BMs the next day.

 

[Chrismac]

Ok, thanks.. that's a good start.

Now to find a book to write it in!! Thing is, I'm just not very faithful with stuff like that.. never helps. But will do my best, albeit sporadically!

 

[CrohnsHobo]

I am trying to write down what I eat every day plus how I felt, how many BMs, any other symptoms. My theory is that something might not jump out right way, but I may be able to go back over the book in a month or so and say hmm, isn't that interesting, everytime I eat _____ I have 10 BMs the next day.

This was how I did it. Should probably get back to doing it too. Have had Crohn's 15 years and still not 100% I can and can't eat.

It was a helpful exercise for me personally, even though my Dr. thought it was a big waste of time.

 

[Lydia]

1. I totally understand your fears. I am the same way. I run the tap when I go to the bathroom to make some white noise. There is some stuff you can buy called Just a Drop. Put some in the toilet before you go and it wont smell bad. When I am in remission everything is normal and I have no pain.

2. As far as diet sometimes you have to cut something for a couple weeks before you know its bad for you. When I cut wheat for a couple weeks and then added it back, I had way more bloating and gas. Its not an instant thing when I eat it but I am way more bloated in general when I eat wheat products. If I only would have cut wheat for a couple days I would not have noticed a difference.

3. When I have active disease my periods always worsen the symptoms, but when I am in remission my periods do not cause any crohns symptoms.

 

[kenny]

Diet was easy for me so far. I started off with 3 months of jello,pudding,broth and ensure. Just adding bits from there. A week or so of eating solid food and my stool started forming. It was a gradual process. Now I am pretty normal and I can tell when it starts to slide. It is because I am playing around with new foods every time. My GI team says that is a result of my digestive system trying to cope with the new foods and NOT any indication of active disease. I have slowly built back up to a complete diet and maintain pretty normal and regular bowel movements.

One thing I think had helped with more regular timing is getting back to a schedule and some good old fashioned labor with my new job.

 

[ameslouise]

Just a Drop is a miracle! If you can't get it in a week's time, keep a book of matches with you at all times! (Also bring your own TP - you might get to their house and find they have sandpaper in the bathroom!).

I keep a food diary religiously. It has also been helpful as I have been tapering off the pred to see where/what level I have issues at and remember how long I have been at what level, etc.

You'll find from reading the "Never again will I eat" and "What are you eating right now" threads how different it is for everyone regarding foods. Some can do dairy, some can't, some can eat meat, some can't. Everyone's different and you'll have to find our own way.

Please be sure to stop back and tell us how the visit with your BF's parents went!

- Amy

 

[Chrismac]

Thanks guys, this is all so helpful. I'm going to start a food diary today and see what happens.

Spoke to my boyfriend last night and he said I will basically have the top floor to myself, so I get my own bathroom!! Perfect. I love that he understands.

You know, carrying a book of matches is not a bad idea at all.. I know I have one somewhere, I shall dig it out. I usually carry Kleenex which is always great in an emergency.

 

[Crohn's 35]

Lucky you and your own bathroom, your bf is a keeper. Having a partner who understands is half the battle. In time try to work the conversation about Crohn's to his parents. There is nothing to be ashamed of and it was not your doing. They too will understand in time. If you are going to maybe marry this guy in the future, being honest about yourself is critical. Trust me on that. You dont have to go into detail and answer only if they ask you questions, not a dinner conversation lol. Don't worry every thing will be just fine. I am a "stewer" too worry about things that havent happened yet. Keep some wet wipes in your purse too, really helps. Good luck!

 

[Chrismac]

Thanks, he definitely is a keeper. Even if it doesn't come up this time round then he'll tell them about it eventually I'm sure.. But way back before we were even together I told him all about it and spared no details.. haha. But normally I'm the kind of person who hates making a big deal.. so I never mention it, too much pride! But I'm not bad right now.. I just worry that I'll get bad.

Wet wipes - definitely a must have, even without Crohn's! In my job I travel a lot, sometimes to countries with poor facilities, one place I went the corn field next to the village was the common place! Wet wipes saved me so often!