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I was diagnosed in 2009 with Crohn's disease. Since then it's been a living nightmare. I've lost weight, struggled to gain it back, now have to gain more weight. I've been on a steroid since March of this year that has weakened my immune system greatly. I have to now go to a dr that ONLY specializes in Crohn's cuz my old dr wanted to put me on remicade and another drug. So right now...I'm tired of living...I am...and I wish it'd end...please I need help and support. I'm all alone with this.

 Reply posted for CollegeGirl67.

My daughter had lost a lot of weight too, she was actually diagnosed as "malnourished".   It definitely took a lot of work, but it is possible to gain the weight back.   Once you figure which foods agree and are safe and which don't sit well it makes things a lot easier.  We met with a dietician, but I understand many people don't have access to one.   You may want to try what was recommended here which is to eat smaller more nutritional meals, more frequently and also to snack with safe snacks inbetween.  Another thing that helped was to try to increase the calories of those meals....add a bit more gravy, butter, olive oil, cheese if you can tolerate it.  Think of the things that someone would remove or cut back from their diet when they wanted to lose weight and add them on.  
Be well,
Lizzies Mom

 Reply posted for CollegeGirl67.

I suffered from UC for 3 1/2 and then started researching online. My husband was my donor and it has now been almost 4 months of being back to normal, having normal bowel movements - no gas, no cramps, no urgency, no blood, etc.  I am back to eating anything I want after 6 months on the Specific Carbohydrate Diet.

If you would like to read my story and see links to other articles, email me.

Just don't give up thinking it is hopeless - there is another way. I am not on any drugs and completely symptom free.

These digestive issues are caused by a imbalance in the bacteria in your gut, most likely from antibiotic use or sometimes food poisoning.

Just google Fecal Transplant and you will find how it is being used to heal digestive issues - I had UC and it healed me.

Email me for a link to my blog - kwi_sky@yahoo.com

Teri

You do have to eat a good amount to gain the weight back.  It is more about eating stuff that is high in nutrients! Last January I changed alot of my eating habits and started working out, and so far i have been able to gain 40lbs.  I was only 130lbs last summer not i stay between 170-175lbs.  If you want some help with anything like that you can email me! Kirklandmj@gmail.com

 Reply posted for UC_susie.

I understand that. :/
I dropped to 94 lbs last summer. DO you have to eat a lot to gain it back? Thats what I have to do and its a pain, I know. Eating all the time and feeling like a pig and all that. It sucks. And I get what you mean by you'd rather be gone. Gosh I know. I think that a lot...because i'd rather just be gone than deal with this anymore...but there's always a light. I found a good use for my Crohn's.
 

 Reply posted for CollegeGirl67.

i understand what you are going through, i know at times it feels like to much and even when you do have people that try it never seems enough because how can they know they embarasment we go through everyday even on our best days. onour worst days we even have trouble understanding ourselves so how could they come close. i get very little satisfaction or peace pf mind when others tell me how "they know how it must be to be me" when they have a "little case of the runs". mostly i am like "sure you know now, a couple of hours of controlable diarrhea lets you know what my life is." i do not normaly give details of what i have gone through, just the basics but i will give some of it here. i was dx'ed after several years of problems and pain. i had so many test done to me i really could not give you a full number or recount of what they did. i was an over the road truck driver trainer at the time and i was in ca when a pain hit me like none before. i went to a local hospital to find out my gall bladder had to come out. i went back home (st louis) to have it done. during the surgery they noticed my intestains where swollenand red and that some sections looked more like dead scar tissue. after a year more testing and looking thats when they said i had chrone's. that was jan of 99. by march of the same year my wife could not handle it anymore and we divorced. the courts in thier wisdom said that no man with this condition could raise kids so i lost my two little girls. that was jan 2000. the stress of the divorce and of the loss of my kids caused my disease to go nuts. summer of 2000 i was told i had to have my first resection, i was but on "feeding tubes" where they had basicly put a hose right into a vien in my chest and every night i had to but a bag of what looked like milk on it and an iv unit to pump it into me. i had to stop eating from that point on until after the surgery. they said i needed to let what i had rest so i could handle the surgery. my family tried to understand and that was a hard year for us. at thanksgiving it about made me cut ties with them as i was told how selfish i was being for not wanting togoto a get together that was abotnothing more than eating while all i could do it watch. i should say by this point i had lost my job as a truck driver and even though i tried to keep working i just could no longer keep a job and deal with what was going on. feb of 2001 one i lost four and a half feet for my first resection. i will fast forward here a little bit for you. 05 and another resection later i was showing signs of an std. as i had not been with a woman since my divorce i refused to believe it. i had a puss coming out of my uranery tract. i never gave up on this and kept looking for what was the cause, i had switched doctors several times and tey cause came clear in 08 when i started passing gas through my *** . a couple years later and some fecal matter came with it. it had to be a fistula, now the problem came with finding it. every doctor said it had to be going into my bladder and until 2012 that was where they looked everytime, an accident in searching on one of the test showed it connected right to my uretha just after the uranery sphincter. this explains why i never had any control over it and why i never felt "preasure" the day before my surgery to remove it i had to take the stuff to clear me out to be ready i had the finial insult ihad a full bm through my *** . of course it was as solid as tap water but i thought to myself if i ever thought what was going on to me was embarrassing back 14 years ago then i was like everyone else and had no clue as to what was. i am still in recovery for having it removed and i am told that i will have to repeat this surgery a few moretimes to have it 100% gone. i am told that this type of fistula is almost unheard of if you have not had radition treatment for prostate cancer. just my luck lol. well to start putt

 Reply posted for CollegeGirl67.

That is so good to hear, I am glad there is no depression. I hope it keeps up like that for a while. I am doing better, the antibiotics really have been helping me out.

 Reply posted for Jhabib.

I've been good. No depression today! :D

Hope you feel better soon!

 Reply posted for CollegeGirl67.

Ok good and other than this sinus infection I am feeling ok. How about you. You feeling ok?  I really hope you are. 

 Reply posted for Jhabib.

Lol its all good. How are you feeling?

 Reply posted for CollegeGirl67.

Me too rather sore from the thought. Sorry for getting that thought in your head. Lol

 Reply posted for Jhabib.

Agh I don't wanna think about it!! Ouch ouch ouch!! I'm sore from just thinking about it!! Rofl

 Reply posted for CollegeGirl67.

I don't want to either. Makes me wonder how people managed in the days before toilet paper and they did their business out in the open. Yikes so painful lol

 Reply posted for Jhabib.

Urg I don't even wanna think about doin my business in the trees!

O_o

Just sounds so painful...

ROFL
 

 Reply posted for CollegeGirl67.

Your welcome :-) I know you will do amazing. 

Good that would be quite painful if you did have to had to use them while you did your business in the trees. 

 Reply posted for Jhabib.

^_^ thank you!

and no. rofl XD omigosh thats hurt

 Reply posted for CollegeGirl67.

I really want them to bring a change as well. Any little bit is better than nothing even if you are young you still can bring a positive change. 

Yuck going in the mountains does not sound fun. I hope you don't have to use pine needles or pine cones to clean up after lol

 Reply posted for Jhabib.

 Reply posted for CollegeGirl67.

oh it would be great to see what we deal with thats why I am so happy you are working hard on your sites. I could bring a real change to things.

Yikes a paper route in the mountains that does not sound fun at all

 Reply posted for Lizzies Mom.

I get that. when I was younger I had pains for years but we didnt udnerstand why. NOW we know XP

I've been feeling ok. I'm working on these sites I'm doing to help people become more aware of Crohn's.

 Reply posted for Jhabib.

Yea...itd be nice if they could see what we have to deal with...

We do a paper route....in the mountains...yea thats NO fun at ALL

Thank you very much XD
It was kinda a spontanious thing to do but....I wanna do it. People need to be more aware

 Reply posted for CollegeGirl67.

Yes, the joint pain is just yet another symptom of my CD.   Though I'm not complaining, there are alot of people that have it worse than me and my daughter.  
I'm hopeful with a little tweeking of my dosage I'll be feeling better soon.   (fingers crossed).

How have you been feeling?  

Oh I definitely want them to see what we go through. This is a pretty bad disease and no joy to have. 

Oh long car rides are no joy for us, I've had many a time where i had to stop someplace on the road because I had to go.  That's why i usually take immodium for anytime I am going to be in the car for and hour or more. 

You are very welcome I got your email with all the links. Great job with the sites so far. I know you will do a great job with them. It will go a long way in to making others aware of what we have. 

Oh I definitely want them to see what we go through. This is a pretty bad disease and no joy to have. 

Oh long car rides are no joy for us, I've had many a time where i had to stop someplace on the road because I had to go.  That's why i usually take immodium for anytime I am going to be in the car for and hour or more. 

You are very welcome I got your email with all the links. Great job with the sites so far. I know you will do a great job with them. It will go a long way in to making others aware of what we have. 

 Reply posted for Jhabib.

Exactly!

And yea. I mean we can't put our pain on them. and yea, I wouldnt wish this on anyone. But I want them to see what we have to go through and they cant cuz its a non-seeable disease!! If you ask me...this is like second worse to cancer.

The urge to go sucks. SPECIALLY when ur in the car for 4 hrs and theres NO bathroom. NIGHTMARE!

Thank you! I worked one em all day yesterday rofl. And youre right. People DO need to be more aware. Which is why I wanna do this. Im gonna post the FB link on here. If it doesnt work I'll email em to you


https://www.facebook.com/pages/A-Voice-to-Be-Heard/308196329299708
 

 Reply posted for CollegeGirl67.

Thanks that means a lot. It is great to find others who know exactly what you are dealing with. It is kind of a great feeling because you have someone to commiserate with. 

It's hard anyone who has not been in out shoes to see the struggles we deal with everyday that we have to go through. 
The urge to go is about the worst thing ever and it really does suck. Definitely not something i would wish upon someone. 

That is so cool you have those sites. Would love to check them out sometime and people really do need to be made more aware of what we are dealing with and the struggle we face. I think a lot of good can come from this. People will never really never know the full extent unless we do talk about it. 

 Reply posted for Jhabib.

Thank you. I'll be there for you too. Its really cool to find people who understand cuz you're all alone with this and you actually find  people and ur like, "OMIGOSH THERES OTHERS?!" lol

Its hard cuz I know my mom cares but...shes never been in my shoes at all and she doesnt know the friggin struggles I go through.

I absolutely understand the urge to go. Holy crap I do.

I dont wanna deal with this either XP Just sucks

and I do have a site. An FB site thats linked with my blog, a google+, twitter, and youtube. I just started this yesterday and got it all set up but I'm working on it cuz people need to be more aware and help. Our symptoms are seeable...so no one is ever gonna know whats wrong unless we tell.

 

 Reply posted for CollegeGirl67.

Your welcome. I am definitely going to do my best to be there for you since we do understand what we are going through and that we have the sucky disease in common. 
I know the feeling like my mom tries to but it does come off like nagging as well. Like I know they are concerned but from a perspective of looking outside in they don't have the full idea of what we do go through on a daily basis. 

I don't have accidents often but once in a while it does happen especially when I get an urge so strong I can't hold it in until I get to a restroom. My urges come to the point where I have to squeeze to hold it in just to allow me enough time to get to a restroom. It sucks because I been on every possible medicine with no real improvement. 

I just want wish there was a way it would go away so I don't ever have to deal with it again. I know this is going to sound strange but it's one of the reasons I have a fantasy of being a vampire if I could. I know rather odd huh. 

I do think making a site is a great idea to help people understand what we go through. I know you could do it and I'd love to help anyway I could. 

 Reply posted for Jhabib.

but...thats why ive been working on making a sight where people can understand. i know i'm young..but this is something i can do.

 Reply posted for CollegeGirl67.

 Reply posted for Lizzies Mom.

I understand joint issues. I get them alot. I think Ive got bad arthritis now lol

 Reply posted for Jhabib.

I love to eat too, but the fear and the hate of stuffing my face with food kills any love of food I have. And the anxiety that comes with what to eat and not to eat about kills me. I mean...I hop on and off from gluten to no gluten cuz sometimes my stomach just cant take it. Do you know how much food has gluten in it?! By the time u narrow everything down, you're left with friggin air!! I'm SOO tired of watching it all. And my mom's like, well you want to be this adult you need to learn to take care of yourself. Yea...says the woman overweight...
I get what you mean about not making it to the restroom. Worse thing ever. And the solution is carry a pair of underwear with you but come on..I dont want to do that! Thats even more embarrassing! I also get what you mean by try to hide it. Ive been doing that and my mom thinks i dont care and want to die. SOmetimes i do want to die. Heck..this would be all over with...but dont care? Bull crap.
I dunno bout seeing someone. I know Ive been alone with this and NO ONE understands it. I get nervous telling anyone cuz...this is a scary thing cuz no one understands! Most of the time they look at you like ur a disease and walk away from you. That hurts...
You and I both arent strong inside...its hard to be when you feel like youre basically dying from the inside

 Reply posted for CollegeGirl67.

Glad you had a good new years and are feeling ok.   
I went to the doc yesterday and he upped my meds, have been having joint issues, but I'm not complaining.   All and all, things are good!

 Reply posted for CollegeGirl67.

I know it's hard to sometimes to want to eat over fear of will my symptoms worsen, will it make me feel bad. My problem is i love to eat and its just so hard to try and avoid the things i like to eat. It's just a constant like i say im trying to watch what i eat but its instantly dismissed that I am really not and its like ugh come on you know how hard this is. I mean it has me depressed to not to mention other issues I deal with so to top it off with this it really brings me down. There are times I want sympathy but I don't get it. I especially hate when I don't make it to the restroom and dirty my underwear it is embarrassing as it is not to mention makes me feel like crap so when I get lectured on eating the right things or whatever, it doesnt make me feel anybetter so no i feel like i have to try and hide it when it happens.
I dunno maybe we both need someone to talk to, somedays i wonder if i do need to see a shrink because of all my emotions. I just don't know, I am not a strong person inside at all, I just can't handle

 Reply posted for Lizzies Mom.

Haha yea. I had to clean up the confetti again this year. I had a good new years and I'm doing ok. How are you?

 Reply posted for Jhabib.

I know what you mean!! My family is always telling me, eat eat eat eat eat. its ANNOYING!! They don't understand the pain and fear that I go through with eating!! I don't WANT to eat. I HATE eating because Im always shoving food in my mouth or I'm scared of what it'll do to me. But if I say that my mom will send me to a psychiatrist. Like I need that!! She doesnt understand I get depressed too because of this crap and she just doesnt get it!! I wanna scream so bad at her sometimes!

 Reply posted for CollegeGirl67.

Your not alone, I frequently feel frustrated by the whole thing. I have had Crohn's for over 10 years now and been on every medicine imagine with no success. I just don't feel normal nor to I have the strength physically or mentally to deal with it anymore. I am literally at the end of my rope with no real sympathy coming from my family because they don't understand my emotions and what I am dealing with. I know they are concerned for my health but the way they go about it is more telling me to watch what to eat and drink which can be like nagging to me at times. They mean well but it doesn't help me. I am trying me best to cope but it seems like I have been punished and can not live a normal life anymore. I just want to give up too

 Reply posted for CollegeGirl67.

Happy New Year to you too........we did confetti one year, I was still cleaning up the remnants 2 months later......it got everywhere!
Hope you had a great time.
Are you feeling well?    Hope so.  
Lizzies Mom

 Reply posted for Lizzies Mom.

Yea my  migrain med doesnt allow me in it...or is it my steroid med...cant remember. Supposedly the dr was sppose to get ahold of us in 2 weeks. Our plans are watching the ball drop and throwing confetti everywhere. Happy New Years to yoU!

 Reply posted for CollegeGirl67.

Liz and I aren't allowed in the sun long either, we're on a sulfa based med, so the D3/calcium really helps.
When is your doctor's appt?   Hopefully you don't need to wait too long and can begin the process sooner rather than later.
Do you have any plans for New Years?  We are just going for some chinese food, and watching a movie.   Hope the new year brings good health to all!

 Reply posted for Lizzies Mom.

I'm not allowed long in the sun because of another medication I'm taking. and yea Im being weaned off the sterioid now. I have no idea about the rest. my new crohns dr will probably be doing all that.

 Reply posted for CollegeGirl67.

Your down spirit may be caused by the steroids, is the dose weaning?    Also, have you had your Vitamin D level tested?   I'm only asking because there was a time that my daughter was very deficient.  Unfortunately where we live the summer months are short lived, so supplements are needed.   She takes Vit. D3, along with calcium, one helps the other absorb.
I hope you begin to feel better, and know that you are not alone, lots of people can relate.  
Lizzies Mom

 Reply posted for CollegeGirl67.

I know exactly how you feel,I've had crohn's since 1986 had 4 bowel resections, just started Humira. I get depressed to so please hang in there.

 Reply posted for Lizzies Mom.

I'm feeling ok. I think i'm depressed tho...but i'm not sure...

 Reply posted for CollegeGirl67.

It's great you already know what to eat.   I remember when Liz was first diagnosed I thought we were eating the best diet possible, but I was wrong.   We had been eating entirely too much whole grains and fiber.  We worked with a nutritionist and it did take some time, but we finally got it.   She's finally growing and gaining weight.
How are you feeling today?
Lizzies Mom

 Reply posted for Lizzies Mom.

No we were suppose to see a dietitian, but we couldn't get to the appointments. I know what I'm suppose to eat and what I'm not suppose to eat

 Reply posted for CollegeGirl67.

I know how hard it can be, especially around the holidays.   This year my daughter wanted to have more control over her gut, so she tried to alleviate much of the rich foods that sometimes make her system feel overwhelmed.   I'm happy to say Liz's idea worked.   She still enjoyed the Christmas Eve and Day, she scaled back a little, and  I didn't find her curled up on the couch at any point - so it was a real blessing!
Do you stick to any particular dietary plan or no?  
Lizzies Mom

 Reply posted for Lizzies Mom.

It all just makes me depressed...cuz I wish I'd feel better now...least for the holidays...

 Reply posted for CollegeGirl67.

It is a good idea to go to the doc that specializes in CD.  Think about it, that is where their experience and training are.    You are right with meds., possible surgeries, but that doesn't mean good days aren't ahead.     Once you and your doctor get your symptoms under control you will start feeling better.   The other post raises a very good point in the ability of the steroids playing head games with you.   In time that will ease too, once your dosage can be reduced and you can be weaned off completely.  
Lizzies Mom

 Reply posted for CollegeGirl67.

You aren't alone in this - most of the folks here have gone through something similar (or are going through it right now).  It is especially tough to be feeling like crap during the holidays, and only you know the extent of how poorly you feel.  One of the biggest problems with Crohn's is that others think we look "fine" and don't understand that looks can be deceiving.

Steroids can have a major impact on your mood - you may want to discuss tapering with your new doc.  Many people get depressed with Crohn's to begin with, and corticosteroids like Prednisone can make things worse.

Remicade, Humira, and Cimizia are actually all logical next steps in treatment.  Their side effects are less than those of Prednisone, and they have different pluses and minuses in terms of life impact (I do the Humira think - I can inject at home without needing to go for the infusion).  Which of the three you are started on is largely a preference of the doc - they are too new to have that many differentiators at this point.  If they help you feel better in general and get you off the steroids, those are pluses.  I've been on Humira for several years, and while it isn't like taking an aspirin it is much better than the 'roids.

This is a great place to find support and ask any questions you can't ask elsewhere, or to just vent.  Best wishes to you and happy holidays.


Martin Bishop

http://evidencebasedibd.blogspot.com/

 Reply posted for Lizzies Mom.

There just seems to be no light. There will be surgery, more pills, more problems. I don't see any good....

 Reply posted for CollegeGirl67.

You are not alone.   There are lots of people who are dealing with very similar circumstances.  
I can hear your frustration and understand how tired one can get of the ever lasting roller-coaster of a ride, but there is a light at the end of the tunnel.   Better days are ahead and you must hang in there.