Share Facebook
Crohn's Disease Forum » Your Story » First time talking about my crohns


 
03-06-2017, 06:16 PM   #1
Osirismc
 
Join Date: Mar 2017
First time talking about my crohns

So this is the first time I've ever really talked about my crohns.. I was diagnosed at 15 with it, and of course I got really sick and lost weight and such but was able to get it under control and in remission until this last November. Of course I had forgotten how terrible the flares are. Being that I was able to go 5 and half years without having one of this caliber. Since November we were able to get it semi under control with methotrexate (my original shot) and Humira. Amongst a few other things. I'm about to finish my prednisone prescription after being tapered back down off of it. And I think I have one or two days left of 20mg. Which was fine to me. But last night was absolutely terrible tons of stomach pain. And having to go to the bathroom all night and having mostly just gas and light diarrhea just had to deal with it from midnight until 6am. I suppose my first question could be do any of you have any tips for the gas? Or painful nights? Im only 21 so I have a very long time to put up with this.. and I go to school and work a lot so this all makes very inconvenient when I cant sleep. Thanks in advance. From what I read so far this might be more help than I think.
03-06-2017, 07:15 PM   #2
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Gas can be pretty painful. Night time trips to the bathroom are very common for me. You can buy gas x, or some other over the counter gas relief to try. Also try to avoid foods that can cause gas during the day. For me it's dairy, or veggie like broccoli..I also try to finish eating for the day by 5pm, try to get the digestion and bathroom trips over early. you can also try drinking a warm herbal tea later in the evening, that helps me. No particular flavor, I think it's just the warm liquid. There are also some yoga poses that can help relieve trapped gas pain. A heating pad, hot water bottle or warm bath help with abdominal cramps. Sometimes lying on my belly in bed helps with cramps and gas. I'm sure others will have some good suggestions too. Good luck.
__________________
Wherever you be.... let the wind blow free!
03-06-2017, 07:36 PM   #3
Forum stalker
 
Join Date: Mar 2017
Location: Adelaide, South Australia, Australia
Have you tried a low residue diet?.These are foods that are low in fibre and bulk up the stools to stop you going as often.It can reduce abdominal pain but everyone is different.I find i can cope with well cooked carrots and well cooked potatoes without the skin.,I avoid milk products because it gives me watery stools.Dont eat foods high in fibre.low fibre vegetables such as above need to be well cooked.I find Bananas are great but avoid all other raw vegetables and fruit. I also cope with skinless chicken breasts cut up into small pieces and cooked in a pan Avoid fried though. Avoid red meat because that can cause bloating as well.But as I have said everyone is different.

Last edited by Forum stalker; 03-06-2017 at 11:30 PM.
03-06-2017, 07:55 PM   #4
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Osirismc,

Make sure to tell your doctor about this. Nobody can function without proper sleep. I feel for you. Talk to me any time, even just for a sounding board. I'm usually around here somewhere. If I'm not I will reply to you. pm's are cool as well.

Wishing you well my friend,

cmack
03-06-2017, 11:49 PM   #5
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Hi there,
I would contact the GI right away. Important symptoms while on 20mg of pred calls for immediate assistance, maybe GI can adjust your methotrexate/humira combo. Wishing you well.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-07-2017, 01:01 PM   #6
Osirismc
 
Join Date: Mar 2017
You guys are awesome and quick! I have called my doctor about this in the past and he always just gives me the once over which I find very annoying because of the odd hours I work it makes it hard to call. Ironically I drink about a gallon of milk every two days or so. Was never really sure if it worsened or was benign to my symptoms because they were always so sporadic. I'm definitely gonna try to do more chicken, I love cooking it in small cut up pieces like that. What do you guys do for sides is my question? Being the raw veggies and fruits are kinda off the table.. What pasta/rice is a good idea?

As for last night, it was better, definitely much less pain, I stopped eating at like 3p.m. With a peanut butter and banana sandwich but then my roommate made steak and salad (I just couldn't say no) both small portions so not to irritate my stomach but that was at like 6pm and I'd say last night was definitely bearable.
03-07-2017, 01:05 PM   #7
Osirismc
 
Join Date: Mar 2017
I definitely do want to thank you all for the responses too. I do all this online research but it's all so impersonal or old news ya know and that really like irritates me. My mom/roommate/family like listen when I complain and try to understand but I feel like it's so empty because they just don't get it ya know? I'm doing much better than November. Back up to 152lbs and the gym 3 times a week. But ever now and again I catch a bad night or day.. Should I just expect that? I almost feel like it's silly to say it this way but I feel like I'm more dealing with it that living comfortably so to speak. And as people who have crohns is that what it's supposed to be? Is that as good as it gets?
03-07-2017, 01:14 PM   #8
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Kinda confused you said you were tapering pred
But you are on 20 mg
Typically you wean at5 mg per week
Ds was dx at age 7 and is 13 now
He also takes humira and mtx
Humira is every 5 days and mtx at 17.5 mg
So there is room to go up from the standard every two weeks

Defiytalk to your GI they may want blood work etc....
__________________
DS - -Crohn's -Stelara -mtx-IVIG
03-07-2017, 01:24 PM   #9
Osirismc
 
Join Date: Mar 2017
Kinda confused you said you were tapering pred
But you are on 20 mg
Typically you wean at5 mg per week
Ds was dx at age 7 and is 13 now
He also takes humira and mtx
Humira is every 5 days and mtx at 17.5 mg
So there is room to go up from the standard every two weeks

Defiytalk to your GI they may want blood work etc....
I started at 40mg and then they said 35mg for five days -> 30mg for 5days ->25mg for 5 days then I just finished the 5 days of 20mg of which I was told to stop completely
03-07-2017, 01:28 PM   #10
Osirismc
 
Join Date: Mar 2017
Kinda confused you said you were tapering pred
But you are on 20 mg
Typically you wean at5 mg per week
Ds was dx at age 7 and is 13 now
He also takes humira and mtx
Humira is every 5 days and mtx at 17.5 mg
So there is room to go up from the standard every two weeks

Defiytalk to your GI they may want blood work etc....
I was on as high of dosage as they'd do, I think I was at 40mg from November to last month? (I also apologize for lack of information) my methotrexate is 1ml a week and Humira is one shot every 2weeks (unsure of dosage as thats preloaded). The Humira started in beginning of January I believe so my doc just kept wanting to give it time to see if it would help. I mean which it did I think. I just don't know if I'm supposed to deal with bearable or if I should be comfortable. Kinda why I wanted to get your thoughts.
03-07-2017, 01:38 PM   #11
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
The highest dose is 40 mg
But the frequency of dosing can be increased
From
Once every two weeks
To once every 10 days
To once every week
To once every 5 days is the highest

Humira takes 3-5 months to be fully effective
03-07-2017, 01:51 PM   #12
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Osirismc,

Have you tried a food diary? You do one by starting out with a couple foods that don't cause you trouble and make a list starting with them. Then you add one new food per day and make notes about what if anything happened from eating it. It is important that you introduce one new food at a time so you can tell which things cause you trouble. Eventually you end up with a list of "safe foods" and a list of foods that trigger a bad response.

You can take this diary with you to the doctor and it may help them figure out what is going on with you as well. Sometimes it helps me to eat small portions more often too, say, six half sized meals instead of three large ones. My doctor told me to be finished eating by 7pm as well, he said it helps rest your bowels.


Best regards,

cmack
03-07-2017, 02:11 PM   #13
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Osirismc,

If you are working night shift, you may want to ask the doctor when is the best time for you to stop eating and rest your bowels. I'm not sure what to do in that case. That question is best answered by a medical professional.


Hope you feel better soon,

cmack
03-07-2017, 02:58 PM   #14
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I hope you feel better soon! That sounds awful. I would also consider contacting the doctor. Those sound like pretty severe symptoms to still be having when you're about to be off of prednisone.
In response to your question about sides when not eating raw fruits and veggies - A great option is boiling and pureeing vegetables. Fiber is really important for healing, and while raw veggies are too abrasive on an inflamed digestive tract, well-cooked and pureed veggies are easier to digest. Personally, I don't eat pasta or starchy foods because I follow the Specific Carbohydrate Diet. Scdlifestyle.com is a great resource to start with if you are interested in learning more about diet as a component of treatment.
03-07-2017, 05:01 PM   #15
Osirismc
 
Join Date: Mar 2017
Osirismc,

Have you tried a food diary? You do one by starting out with a couple foods that don't cause you trouble and make a list starting with them. Then you add one new food per day and make notes about what if anything happened from eating it. It is important that you introduce one new food at a time so you can tell which things cause you trouble. Eventually you end up with a list of "safe foods" and a list of foods that trigger a bad response.

You can take this diary with you to the doctor and it may help them figure out what is going on with you as well. Sometimes it helps me to eat small portions more often too, say, six half sized meals instead of three large ones. My doctor told me to be finished eating by 7pm as well, he said it helps rest your bowels.


Best regards,

cmack
I have not yet, I kind of thought it was silly/difficult to keep up with. My schedule day to day just makes it difficult to maintain a good dietary schedule let alone a book to follow it. But I think I really may have to just buckle up and make it happen.
03-07-2017, 05:05 PM   #16
Osirismc
 
Join Date: Mar 2017
I hope you feel better soon! That sounds awful. I would also consider contacting the doctor. Those sound like pretty severe symptoms to still be having when you're about to be off of prednisone.
In response to your question about sides when not eating raw fruits and veggies - A great option is boiling and pureeing vegetables. Fiber is really important for healing, and while raw veggies are too abrasive on an inflamed digestive tract, well-cooked and pureed veggies are easier to digest. Personally, I don't eat pasta or starchy foods because I follow the Specific Carbohydrate Diet. Scdlifestyle.com is a great resource to start with if you are interested in learning more about diet as a component of treatment.
I just don't find my doctor helpful necessarily and my next step is a specialist my mom found. But while I know my health is important so are the other things I'm involved in school, work, and my side jobs, and of course spring break which is coming up. And I know that seems stupid but I find it so frustrating to have to miss a class or a half day at work to get nothing from my current doctor. And I know if I get set up with this new specialist it's gonna be even longer for him to meet with me and get caught up with my situation. And I know that must sound immature. I just am so sick of this taking away from my life. But I appreciate the sides suggestion as well. I'll definitely be checking out that website. And I will try to get something set up with my doctor in some sort of timely fashion.
03-07-2017, 05:10 PM   #17
Osirismc
 
Join Date: Mar 2017
Osirismc,

If you are working night shift, you may want to ask the doctor when is the best time for you to stop eating and rest your bowels. I'm not sure what to do in that case. That question is best answered by a medical professional.


Hope you feel better soon,

cmack
I don't necessarily work the night shift. That's the issue my schedule is very unpredictable. At the moment my schedule is 'basically' work my winter job from 5am to noonish then go to school from 1 pm till about 6pm then I do mechanic work after school generally.. And that could run till 8pm or 1am the next morning.. On top of that my main job is a landscaping company of which I plow in the winter and I could be plowing at midnight till 5am or more or less.. Or another time.. It's just such a floppy schedule. Same with weekends.. It's just so hard to get a beat on normal meals or keeping up with what I ate. I haven't eaten McDonald's in probably 6+ months but I remember a month ago or so I was out for like 28 hours straight between work and school and plowing and it was like 3am and I broke down and got McDonald's cuz I was starving (terrible mistake) but it's just so hard to be prepared for every situation.. Do you guys run into anything like that?
03-07-2017, 05:37 PM   #18
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I just don't find my doctor helpful necessarily and my next step is a specialist my mom found. But while I know my health is important so are the other things I'm involved in school, work, and my side jobs, and of course spring break which is coming up. And I know that seems stupid but I find it so frustrating to have to miss a class or a half day at work to get nothing from my current doctor. And I know if I get set up with this new specialist it's gonna be even longer for him to meet with me and get caught up with my situation. And I know that must sound immature. I just am so sick of this taking away from my life.
I think you are on the right track seeing a different doctor. It makes such a difference to have someone you feel like is really listening, and really invested in helping.

And I totally feel all of this. I am so sick of being sick, and I want to be able to just focus on the things that are important to me... But... we are unable to fully give our full energy, focus, and potential to those things if we don't take care of ourselves first.

It sounds like you have a really busy life. I know it can feel impossible to find time, but I hope you find a way to make sure you are taking care of your health.
03-07-2017, 06:02 PM   #19
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
I agree with Magnolia 100%

Health has to come first! And yes, sometimes I end up eating fast food or making the odd poor choice because of time constraints as well. I pay dearly for doing that. I'm learning to plan ahead better and take something healthy with me when I go out. I often times make a batch of something that I like and that agrees with me. I make enough to last say 3-4 meals, then it is more convenient to just grab and go.

I hope this helps,

cmack
03-07-2017, 06:17 PM   #20
Osirismc
 
Join Date: Mar 2017
I think you are on the right track seeing a different doctor. It makes such a difference to have someone you feel like is really listening, and really invested in helping.

And I totally feel all of this. I am so sick of being sick, and I want to be able to just focus on the things that are important to me... But... we are unable to fully give our full energy, focus, and potential to those things if we don't take care of ourselves first.

It sounds like you have a really busy life. I know it can feel impossible to find time, but I hope you find a way to make sure you are taking care of your health.
Thank God, I'm always feel so alone when it comes to that. I'm sick of feeling sick. And you're right I know I need to make time sooner but and my health shouldn't take such a back seat. And it's funny because when you guys say it, it feels different then when I hear it elsewhere.. Idk if it means more coming from someone who understands or what.. But it's appreciated. And I think with change of doctor in the near future and being able to talk to you guys who get it I'll be able to find a middle ground. Even just being able to vent helps.
03-07-2017, 06:19 PM   #21
Osirismc
 
Join Date: Mar 2017
I agree with Magnolia 100%

Health has to come first! And yes, sometimes I end up eating fast food or making the odd poor choice because of time constraints as well. I pay dearly for doing that. I'm learning to plan ahead better and take something healthy with me when I go out. I often times make a batch of something that I like and that agrees with me. I make enough to last say 3-4 meals, then it is more convenient to just grab and go.

I hope this helps,

cmack
That's a great idea! I definitely need to do that more often. Glad to see I'm not the only one who gets stuck in a pinch.. Is there any fast food that's not a bad idea? Or even meals at restaurants?
03-07-2017, 06:24 PM   #22
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
I find that Subway isn't too bad if you get something that agrees. Sometimes I have a tuna sub on whole wheat, hold the cheese. I usually get away with it. It depends what agrees with your system.
03-08-2017, 12:09 AM   #23
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
Yes! I am all about batch cooking!

I don't eat in restaurants often...But some things that have been helpful for me...Some places will have a gluten free menu with options that work for me, Ordering a burger without the bun is always a good option, asking for grilled meat, steamed veggies - basically just trying to get it as simple as possible, avoiding extra sugar, dairy, etc.
03-08-2017, 02:02 PM   #24
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hey Osirismc,

How are you doing today? Also what kind of mechanic work do you do? I have been turning wrenches since I was a very young lad and still have a fun time doing it. I'm just curious by nature.

I hope your day goes well,

cmack
03-09-2017, 02:09 PM   #25
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Hi Osirismc, I'm sorry you're deal with this! I don't have crohns but my son does and he`s approx. your age. And, he feels the same!! Even though his crohns has been good, he's had other misc issues and hates that he misses classes, social events, sports due to feeling sick or needing to go to the doctor. So, through him, I do understand your frustrations.

But, even though it's more time spent now, I do suggest a second opinion if you don`t feel your GI is listening to you. In the long run, it could end up being the option that lessens the amount of 'down' time due to illness.

As side dishes, rice, pasta or potatoes (mashed, boiled) are fairly easy to digest as they are low residue, as is white bread. Eggs and fish are other protein options.

Years ago, my son started drinking nutritional shakes as part of his treatment... he continued with them, at lower amounts, to supplement his nutrition and caloric intake. Now he drinks them often just because they are a healthy and 'convenient' choice. So, he`ll drink a Boost shake for breakfast because it`s easier than making breakfast and healthier than picking up a fast food breakfast sandwich. If he`s rushing to get to a hockey game, he`ll drink a shake to fill him up before the game because, again, it`s easier to just grab the shake than make something... Keeping these shakes handy might be a good option for you when you want to take a snack with you.

The shakes can also supplement your diet, especially when you're not feeling well. They are very easy to digest, so will be easier on your gut when it is inflamed. Perhaps a small meal with a shake to drink?? (But, I do believe Boost is dairy based so, if dairy poses a problem, you may have to consider that. But, there are other types/brands of nutritional shakes available, ie Boost also sells nutritional 'juices'.)

Although inconvenient, I'd also recommend the food dairy. Many with IBD also have IBS and/or food intolerances. It may be that dairy, gluten, or some other foods are causing some of the problems. But, I know that's annoying and hard to do (especially with your schedule!!).

Good luck!!!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-09-2017, 06:24 PM   #26
Osirismc
 
Join Date: Mar 2017
I find that Subway isn't too bad if you get something that agrees. Sometimes I have a tuna sub on whole wheat, hold the cheese. I usually get away with it. It depends what agrees with your system.

I love tuna subs, was scared to try em. But gonna now haha.
03-09-2017, 06:25 PM   #27
Osirismc
 
Join Date: Mar 2017
Yes! I am all about batch cooking!

I don't eat in restaurants often...But some things that have been helpful for me...Some places will have a gluten free menu with options that work for me, Ordering a burger without the bun is always a good option, asking for grilled meat, steamed veggies - basically just trying to get it as simple as possible, avoiding extra sugar, dairy, etc.
I always hated being 'that customer' but looks like I might have to if I plan on eating out! Haha thank you very much
03-09-2017, 06:31 PM   #28
Osirismc
 
Join Date: Mar 2017
Hey Osirismc,

How are you doing today? Also what kind of mechanic work do you do? I have been turning wrenches since I was a very young lad and still have a fun time doing it. I'm just curious by nature.

I hope your day goes well,

cmack
Yesterday was good until about ten p.m. I was doing late night work on my truck and actually had to stop around 1130pm.. I usually power through while I'm working on things but I had no shot at that last night. Went home hot hot shower, laid down and actually slept the whole night. Very odd.

As for mechanic work. I started in a diesel semi shop at 15 did that for 4 years, shop closed. So I started doing odd jobs landscaping,autozone, Starbucks etc.. And when I had started at autozone people came in with problems on their vehicles.. It occurred to me, I still have tools I still have a skill... So why not fix cars out of the garage. Did that for a long time. Would go to autozone in the am, school in the afternoon till 7or 8pm and do cars third shift.. So they could have them back before 6am when they had to go to work... Made great money.. Just was too exhausting.. Stopped that and started to focus on school instead. Every couple months I take a break and don't do any. Then I pick it up again for 9month or something.. But now as of finding so many connections I have several different shops I can work in.. With every tool I can imagine. So it's much easier now than it used to be. But that's what I do..
03-09-2017, 06:45 PM   #29
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hey Osirismc,

I used to work in the body shop for a Mack/Volvo dealership in Calgary Alberta. I also helped the heavy duty mechanics and the auto detailer too. I have a lot of years put in turning wrenches. I never got finished my apprenticeship because that is when I got sick. Oh well, I loved every minute of it. I still do a little work on passenger cars and trucks as well.

Thanks for sharing that with me. I think it is cool to be mechanically inclined.


Your bud,

cmack
03-09-2017, 07:20 PM   #30
Magnolia24
Senior Member
 
Magnolia24's Avatar
 
Join Date: Nov 2013
Location: Oregon

My Support Groups:
I always hated being 'that customer' but looks like I might have to if I plan on eating out! Haha thank you very much
Hahah ugh I know. Getting over this feeling is something I'm still working on.

Honestly, I've found places that already have menu items that work for me - those are the places I'll go to regularly...Then save my "That customer" moments for when I am travelling.
Reply

Crohn's Disease Forum » Your Story » First time talking about my crohns
Thread Tools


All times are GMT -5. The time now is 06:19 AM.
Copyright 2006-2017 Crohnsforum.com