Feeling low and no one really to talk to...

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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/14/2008 6:06 AM (GMT -7)   
What a way to start your day by experiencing for the first time ever not making it to the restroom in time sad I'm so frustrated with myself at the moment because I have no idea what is going on with my body. It seems like the medication, humira specifically which I took again just the other night, isn't working or...have any of your doctors ever told you any specific reason as to why your bodies are unable to be controlled at those times? I mean I have to laugh obviously. I rinsed and put everything in the laundry and am waiting for my phone to charge to call the doctor's office hoping someone is on call to prescribe something, even temporarily until I can get in to see the GI, to make this a less likely event. All I know is that I can't go to school if this happens a lot...I've already spent the greater part of my week bawling my eyes out and feeling in general just low but now this...It's not that I'm ashamed, but the social stigma surrounding what happens with this disease is really getting to me. As if it isn't bad enough to be ill but that you can't even talk about it without being regarded with disgust. Luckily, my fiance was on his way to work and my brother asleep.

*sigh*
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 12/14/2008 7:01 AM (GMT -7)   
(((((((((((((((((((((LMills)))))))))))))))))) I am so sorry, and please know that it happens to all of us. Have you tried using a bit of immodium or something like that.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/14/2008 7:34 AM (GMT -7)   
Hi That has happened to me many times before and not nice but I carry extra cloths with me and that alone makes me feel more confident. As far as when I am home well that is the best place to be when one of those days hits. Maybe talk to your Dr. when you see him about Imuran or something sometimes the biologics just don't do it. Hoping things improve for you and I know how frustrating a person can feel. When you start getting your strength back hopefully it will help you.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/14/2008 8:16 AM (GMT -7)   
(((LMILLS))) I am so sorry that that happened to you. Please know that we have all been there at one time or another. I agree with MMMNavy maybe try taking some Immodium to at least help slow it down again. I think maybe you need to get on some Pred or something to get this flare under control quickly. Hope you get feeling better soon.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


sherry68
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/14/2008 10:49 AM (GMT -7)   
Hope you feel better soon, Been there done that! Immodium is what I do to slow it down and bananas
Diagnosed with Chrones Disease in 1992
Total Colectomy 2005
No Meds to date:
Never felt better: I HAVE A LIFE NOW!!!


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 12/14/2008 11:40 AM (GMT -7)   
LMills,

I'm so sorry this happened to you cry

The first time I had my first big accident was at 330 in the morning. My dog woke me up because he himself had diarrhea and needed to get out as soon as possible. I was going through a flare at the time and as soon as my pup disappeared into the bushes I was hit with intense pain. My pores opened up and I knew that I wasn't going to make it. I stood there, in front of my neighbors house in the middle of the night, and had the second biggest bloody poo accident of my life. It was awful. I had poo running down my legs, eek. To make matters worse, when my dog came back from the bushes he smelled me, looked at me and seemed incredibly confused! That was even more humiliating! I was so humiliated, even though just my pup was there.

The biggest accident I ever had was this past summer when I was at my parents house. My brother was in a meeting with his boss (he works from home) and I was in my room. I got hit with a huge flare and had to sprint out of my room and didn't make it. My brother's boss was there and it was just incredibly awful. And the smell, well, that was awful too (considering it smelled up the entire basement area). I broke down crying and didn't come out of the bathroom for over an hour. Eek.

When I was at that stage, the only thing that controlled me was prednisone. Luckily, now that I've tapered, I've been able to stay healthy without needing prednisone. This is the first time since I've had Crohn's that I've been able to go almost three months without the 'roids.

Good luck to ya, and PLEASE keep your head up. =)

-Em
turboemma.blogspot.com/


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/14/2008 1:20 PM (GMT -7)   
Thank you guys so much...It makes all the difference to be reading these posts..
I know I should have expected it sooner or later, but I guess really no one actually does. I'm going to try and get the immodium today. I heard some of you only take half of the pill to see its effects and continue from there? Does it make a difference if you eat when you're on it? And how long do the effects normally last???

I'll probably be increasing the steroids AGAIN hah...they don't really seem to be doing anything, but then I am only on 5 mg right now and I guess being on a higher dose and making it through the day is better than sitting in the bathroom the entire Christmas season. What a difficult little pill to avoid heh.
Again, thank you all. I just can't imagine how much harder things would be without having you here. I wish would words could even express how grateful I am!!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/14/2008 3:01 PM (GMT -7)   
Huge hugs, LMills.
Co-Moderator Crohn's Forum.


sulleysullivan
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 12/14/2008 4:49 PM (GMT -7)   
i'm sorry i know how bad it sucks! we all do! the first time it happened to me was before i was diagnosed i was going to the movies with my boyfriend and i stood up to get out of the car and oops! ha ha i know its really uncomfortable situation to talk to anyone about. theres a really funny comedian he's on a website called crohnsandme.com he shares some of his stories and makes them funny so we know we're not alone! hopefully your days go better! :)

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 12/14/2008 6:18 PM (GMT -7)   
I'm so sorry. I've had some moments like that and I've only been lucky that they occurred at home. It must suck and it's one of the wonderful suckiness that is this disease. Just know that nothing can last like that forever.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/14/2008 6:24 PM (GMT -7)   
Ah, one more question!
My fiance just came with immodium, but it says not to use it if you have bloody or black stools....I have been noticing blood every now and then, and the color is ummm probably VERY dark green. I really want to take it though :( I need rest for god's sake...even if just for a few hours and not by the mercy of pain pills.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 12/14/2008 6:29 PM (GMT -7)   

Hi LM,

I wish I could give you some helpful advise, as you so kindly took the time to do for my daughter, (Stomach Pain?). Unfortunately, I really don't have enough experience to offer you any substantial help. You must be quite a fine young lady though, considering you're obviously battling your own circumstances, and are taking the time in the face of that to help others. That's admirable. Well, being Catholic, I just got home from mass tonight and the sermon, (don't worry, I'm not trying to convert you), was about how God only gives us challenges, not crisis. I know you sound really down right now, but you'll get stronger in the days to come. I'm sure you'll stare down the challenge. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 12/14/2008 6:31 PM (GMT -7)   
Well, I'd say take a super small dose. Even a small dose should help. My surgeon suggested I use it if the D won't go away. I have a bit of blood every now and then but I tend to think its my hemmie but I notice darker reds too. I hope it works.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/14/2008 6:52 PM (GMT -7)   
I don't think I can give ya any suggestions... When my Crohn's flares up, I usually have constipation really bad.... *There's been a few times where I've had D, though... I only had an accident once... happened while I was in bed... no one was in the dorm at the time*

I'm sorry this happened to ya, though... *Hugs* Seems like you run into so many problems.. I hope things get better for you. And I certainly sympathize with the part about school... :(
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/14/2008 6:56 PM (GMT -7)   
Monte-You support alone means more than I could ever say and I really mean this. Things would be so much more difficult without the support of all of you.

I just took a small dose a few minutes ago so we'll see how it goes....thank you guys for the advice!! It's been extremely helpful :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/14/2008 10:06 PM (GMT -7)   
Hi LMills...no advice just hugs, prayers and support!

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/15/2008 9:26 PM (GMT -7)   
Hey guys..just wanted to say that I tried the imodium. I woke up in tears because of family drama, went back to bed, woke up and had to use the restroom 4-7 every half hour. Then I got a really supportive message from a friend, was able to talk with my mom about things, spent time with my boyfriend, and took all of your advice and took half of an imodium tablet. I was able to eat and have only gone to the bathroom twice since taking it...I called my doctor just to let them know and they were supposed to call back but never did hah...
Simply put though, thank you all...you've helped me SO much. I only hope I can return the favor in some way sometime. Your advice and support...well, they leave me at a loss for words sometimes.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 12/15/2008 9:46 PM (GMT -7)   
You can be very helpful and supportive, too, LMills... *Hugs*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 12/16/2008 5:54 AM (GMT -7)   

Hi LMills, I know exactly what you are going through I have had the exact same problem for some time now and unable to get on top of it. I did take bucket loads of imodium even though I always have blood in my stools but I had to in desperation to not keep having accidents, it was happening to me in the middle of the shops almost every time I left the house. I to became so low that I never thought I could get back up again but I will not let this horrible disease win the fight. I have those days and have days where I cant fight. Be careful not to take too many in case you begin to block cause that is painful too but for now I hope you have a solution taking small doses but if I were you I would keep calling your doc until they reply to you, because you cant go on like that. I will be thinking of you and hoping for a great outcome for you soon.

take care

andorable


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/16/2008 7:39 AM (GMT -7)   
Oh andorable...that sounds miserable...I really admire you for keeping such a positive disposition...it really helps me, and I'm sure the others who read your post, feel inspired to stay strong. I did get a reply from my doctors and I have to increase my prednisone dose again. They said it's all they can do for the moment. Hopefully the humira will kick in before the next appointment so they don't start talking about cutting pieces of me out :)
I hope you're having a lot of those good days right now! Please, keep that wonderful attitude and I will definitely follow!
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 12/16/2008 10:46 AM (GMT -7)   
LMills, I have had lengthy discussions with doctors about Imodium. They all think its pretty harmless as far as side effects. I have also taken it when passing blood and all was ok for me. Hope it helps you. Only one thing I have noticed while on it. It pulls a lot of liquid out of your body. You may need to go empty your bladder more so dring extra water for your kidneys sake. I think they suggest 2 pills first and then one each time you use the bathroom. As for accidents, we all have them , even people that dont have crohns so dont let it get to you.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 12/16/2008 1:36 PM (GMT -7)   
Hey Lmills, I understand how you feel. I am not much older and feel bad when it happens. Highly embarassed, but what can we do but be prepared as my mom says. :) Here is some of my totally embarrassing moments. :) Hope this makes you feel better.

I thought i was over having my accidents and then just when I was helping a friend with her flooding apartment the day before yesterday, and bam it just hit me. I was so embarassed because i rarely have accidents. luckily her and i are the same size. I think I was so worked up by the water coming from the fan in her bathroom, the light in the hall way and the light in her bedroom as well as various holes in the ceiling, that I forgot about my condition and got a little too worked up. It was a lot of water.I thought I was ok at the time so it was totally unexpected.

I havent had many accidents in public, knock on wood. I usually am at home when i have had accidents. I have never had one around my bf of 3 yrs luckily either. I only recently told him about them in general. He didnt even have a clue. He always figured that I got to the bathroom on time i guess. ?

The only other public accident i have had this year was a couple months after i had my daughter. I havent told anyone this yet and it is still so embarassing.
I was at a court house doing a friend a favor. I had a normal tummy ache, for me that is. We drove to a place an hour away from where we lived and i was looking after my friends little boy. I thought i was feeling pretty good. We had stopped at tim hortons before we left home and he had gotten his son some timbits to occupy him while he was doing his thing at the court house. It took about an hour and while we were waiting outside the courtrooms, i had a couple timbits, knowing full well they would upset my stomach. Within 5 minutes i had to go really bad. There i was with a toddler and an infant with a couple sitting a few feet away, total strangers. I didn't know what to do. Within a couple of minutes my friend came out while I was strapping Claire into her carseat and took his son out to the truck. I said I would be right out. I didnt think I was going to be long, but it took about 20 minutes.

I thought i could breathe through the pain. No way. It just kind of happened. I was lucky it was summer time. I was wearing shorts and a really long top. Also very lucky. I stood startled and it went every where. Down my leg, into my sandles all over my daughter who was only a few inches away from me in her carseat. I had an extra pair of clothes for her and I stripped the pants she was wearing and threw them away. I was upset about her pants because they were my favorite ones. I had to ask these total strangers to look after my baby while i rushed to the bathroom to clean up. They didnt notice anything i dont think. I ended up dumping my favorite pair of underwear in the garbage and taking off my shorts, washed them and put them in a plastic bag.

To this day my friend doesnt know that this happened either. When I got home my bf asked what that funny smell was on the carseat. I fained that i had no idea. I scrubbed and scrubbed it trying to get the smell out. :( i think it has finally faded.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)

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