Feeling so sad and beaten down :(

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FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 7/14/2009 1:05 AM (GMT -7)   
Hi everyone...

I am feeling so sad and isolated from this at the moment...it really really sucks. I am 27 years old and I live in a great city and have great friends and I feel like I should be loving life right now. But, since being 22 and getting diagnosed, I have been sick sick sick. This is the first time that my flares have been this bad and I just really really don't know what to do...

Normally, I have kept a pretty good attitude about being sick, probably because I haven't had very many complications from it and it has for the most part been pretty tolerable. But, this past year or 2, it has rendered me almost bedridden at times instead of just making me more tired and just needing to constantly look for bathrooms....

I get dizzy right before I need to make a bowel movement, I have been on prednisone and entocort....hospitalized 2 x's in the past 6 months and have not been working for the past year!! I live alone and frankly I am lonely & feel pretty depressed at times. My friends know that I have stomach probs but they don't know the "chrohns" diagnosis, because I don't want them to look at me like I have a serious disease...because frankly, I don't want it to define me, because it doesn't. But, it's just hard because I am stressing about money and would love to just move forward...and would love to have a boyfriend again...it's so hard to go out because I have the bathroom phobia thing sometimes...in people's houses or apt's especially...I don't want to smell them up! That's the worst thing about Diareah...it smells so bad! What do you guys do about bathroom anxiety like in people's homes for example? I wonder what I will do if I have a boyfriend!!! omgosh...can you imagine? I mean how do you tell people about that stuff? I would love to feel comfortable enough to do that...but I feel so....embarrassed by it!!! I just hold it and probably make it worse...and get really constipated at times...

And, to make matters even worse, this combination of entocort and prednisone has made my hair sooooo thin so it's a constant reminder of me being sick even during those few times of me feeling even slightly better. And...the pills aren't even working...I have a lot of pain and bloody stools still and that was all still happening even on the prednisone.

I'm sorry to be venting, but I just really don't have anyone else to really talk to about this that would understand the way that all of you will. Normally I have a much better attitude about this I think...but just right now, this is feeling so bad!!! And, I am so frustrated! The hair thing is just the clincher I think...I mean I have gained weight before from the pred or from the bed ridden thing or even from eating some more chocolate than I should have because I was a little depressed...but now the hair!!! How long does it take for it to get thicker again??? My hair is really long...when will it bounce back? I am now off the pred..and if the entocort is what's causing it, I will try something else instead because this is a side effect that is very bad. I feel like it is representative of what these drugs might be doing to my body, as ou hair and nails are always a good indicator of our overall health...It really scares me and makes me feel more like I really am sick :(

Thanks for listening!!!
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/14/2009 1:21 AM (GMT -7)   
Hi Chance, and thanks so much for trusting us enough to share your troubles.

This is just a very quick one, as it's late here, but may I ask what country you live in? I'm wondering if perhaps there are some support services - cleaning, help with shopping, free counselling, a visitor to come and chat so you don't feel too isolated - that could help you during this difficult time. I don't know what the situation is like in the US, but they are available in my country, but you have to know that they exist before you can ask for them!

Your concerns about your symptoms being visible / smellable / hearable to others is a common one, and here are a couple of threads where members from the Crohn's and UC forums have shared their ideas for hiding some of the most embarrassing sounds and smells:

http://www.healingwell.com/community/default.aspx?f=17&m=1458444

http://www.healingwell.com/community/default.aspx?f=38&m=1491212

As far as your symptoms go, I have a feeling that you may be undermedicated and that you might be needing something stronger so that you can have a better quality of life. Again, I'd be interested to know what country you live in (and, if in the US, what your insurance is like) so that, together, we can work out some options for you.

Please keep hanging in there. You're having a horrible time, but I hope that we can help you work out some strategies that may improve your situation.

All the very best,

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 7/14/2009 2:04 AM (GMT -7)   
Thank you for the links to the threads...those are good tips. I live in the US. What country do u live in? I also have decent insurance right now and have seen a couple GI's, this current one that I have been seeing just did a colonoscopy on me last month and that's when I was diagnosed with the Chrohns whereas before that the diag was UC. Undermedicated? What makes you think that? I am on 12 pills of Asacol, 3 pills entocort and just finished a month of pred....what more is there? They are talking about doing humira...but I dunno what I think about that. Thanks for the kind words. Would love a plan.
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/14/2009 3:22 AM (GMT -7)   
The 5-ASA meds (e.g. Asacol) and steroidal medications like pred and Entocort are often considered to be starter meds. Patients who don't respond to those started meds are bumped up to more aggressive treatments, either immunosuppressants (e.g. Imuran, Methotrexate), or biologics like Remicade and Humira.

I think it is unusual that you have been left on just Asacol and steroids despite being so sick, and despite being in and out of hospital. When do you next have an appointment with your doctor? I'd be interested to know what s/he has to say about your current and future treatment...

Ivy.

ps. I'm Australian.

pps. You may find that your hair loss is related to illness rather than your medication. I lost more than 1/3 of my hair when I was at my sickest, but it grew back eventually.
Co-Moderator Crohn's Forum.

New meds thread


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/14/2009 4:25 AM (GMT -7)   
I agree with Ivy. If your that sick, your under medicated. I'm taking asacol and my doctor said that it is a base line drug or like Ivy said a starter drug. A step up would be 6mp/imuran, Methotrexate. The hard core drugs would be: Remicade, Humira, Cimzia, I even put high doses of Prednisone here. You need to find a medication that is going to work for you and that is going to mean trial and error until you find it.
I wish you all of the best and I hope you feel better soon.

Wolfie
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Crohnie_Mel
Regular Member


Date Joined Jan 2009
Total Posts : 23
   Posted 7/14/2009 9:15 AM (GMT -7)   
Oh my goodness....I FEEL EXACTLY what you are going through...you literally wrote how I have been feeling on the inside and put in on this forum so thank you. I am 25 and have had this disease since senior year of college and it changes almost everything in your life, because you are changing how you are living it. I live in NYC and commute into Manhattan everyday --- so running for a bathroom can get extreme at times! You are a fighter and you can tell by how you express yourself that you have an underlying strength to get past this and not make this disease something that consumes who you are as an individual. I had to learn the hard way-- being diagnosed at 20 - that I needed to take better care of myself...had to limit the amount of crazy nights and drinking till the sun comes up! I agree with the other people who responded to you, entocort and asacol are very mild drugs for the symptoms you have been describing. Talk with your GI as to what your options are.

As far as little tips for flares and nervousness --- I bring a little spray in my purse like bath and body works or something...oh and a little package of travel wipes! haha you never know where you're going to be! I have been told I carry a mary poppins bag but make sure you keep things for your tummy like immodium or something for acid reflux. (Well I also have my prednisone, percoset, anti nausea etc but whos counting!) When I go out and wear a clutch or something I consolidate all my pills! Also, don't underestimate your friends...I've been in the hospital so much too and it def is scary for those you love you --- but the more they understand the better it is! Less pressure on you...you sound like an outgoing person so you don't need to be out wasted to have a good time! Just know your limits, if you're tired let your friends know you want to just go out for dinner or head back to go to a movie or something. Your friends only want to see you happy and healthy!

And finally, you can have a relationship! As scary as it sounds...it happens and when you are ready for it, it will! I've been in a relationship for 3 plus years and he is amazing. Not going to sugarcoat it, it's very hard at times because if you feel so out of control (prednisone turns me into the hulk) but if someone loves you they love all of you! You deserve it! When I met him he would blush at talking about a simple menstrual cycle, and now it's like move outta my wayyy I need the toilet haha...he has driven like the wind to get me to a bathroom in time and it's scary as hell but it's LIFE. Your life! Crohn's is a funny thing...it's so sporadic for most so keep your head up things can get better! Where are you from? My former nurse and best friends sister in law are both in their 20's with the same disease, and having someone to talk to about it who really gets it hard been life changing. If you want to talk further don't hesitate!!! Hope you feel better soon!
Melissa -- New York City
Diagnosed with Crohn's in 2004


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 7/14/2009 10:42 AM (GMT -7)   
Hi fightingchance,
It is hard to know what to tell to people when having CD. I miss some get togethers b/c of my gas noise and smell, let alone all the days of D and pain. I have found it better for my close friends and coworkers to know but even that is challenging b/c they don't really know what it is.
Just a couple of things: I found a sample size of febreeze that I carry with me which helps. And as far as your hair, it makes it appear and feel thicker to get it cut a little.
Just 2 simple little pieces of advice. But hang in there, you will find someone someday friend or companion who will be a support and laugh at your gas with you. Sometimes all you can do is laugh about it.
I hope you start feeling better, I'm learning about CD all the time and my body. I too wish I wasn't sick. I hate it.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
 
I live by faith and not by sight....


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 7/14/2009 12:17 PM (GMT -7)   
Adjusting to chronic illness is hard. It may be one of the hardest things you have to do in life. Since it took a long time for your diagnosis your adjustment was made more difficult.

YOu do sound like a lover of life and things will get better. CD is a life long disease but it is not the end of your life. Things are drastically different from before but you will get better with more medical care, diet, exercise, supplement and whatever else is in your health arsenal.

Have mercy on yourself. You did not cause this to happen to you. Life is just different, that is all.

Donnaeil

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/14/2009 12:45 PM (GMT -7)   
FightingChance- So sorry you are feeling down. I feel, or should say, I felt your pain. It is a terrible way to live. What have you tried, if anything, to change to see if you get any improvement, outside of prescription drugs? For instance, have you tried a diet change, like the SCD, or antifungal diet? I know there are those on this, and the UC forum, who have been helped by changing diet. I had UC symptoms for 8 years, and was very depressed, like yourself. I eventually decided to experiment with an antifungal diet (at the ridicule of my doctors), as on my own, I found out that UC and CD can have a fungus link, and patients had gotten well from following such a diet. Could it possibly pertain to me? Well, within weeks of being on the diet, I was feeling so much better and I knew I was onto something. Today I am med-free with no symptoms. I still have IBS tendancies, so I try to stay away from processed food, especially bread. I think I am yeast intolerant.

What I guess I am trying to say is, don't give up hope! Eventually you will find the best combination of drugs/diet that will help you feel better. The key for me to getting well again was CHANGE. If you always do what you've always done, expect the same result. Perhaps you could try a diet change. I can't predict it will work for you, as I sure didn't expect it would for me. I would also recommend probiotics for you, if you aren't already taking them.

Best to you. Keep smiling :)

baaadgut:(
Regular Member


Date Joined Nov 2008
Total Posts : 22
   Posted 7/14/2009 6:47 PM (GMT -7)   
I feel so bad for you as you go thru this. Not sure what to say that nobody else has said. I also thought it to be devistating when just about all of my hair fell out but I am happy to say it all grew back thicker and nicer than it was. It seems that even when you feel lousy if you can do your hair and put some make up on you feel a little better -- instead buy yourself a new outfit.. you deserve it. I agree that you should try and find a support group, it is always nice to be in company of others who totally understand what you are going thru. amd if there is no support group close by lean on everyone on this forum. I will keep you in my prayers and hope that you feel much better soon.


Chin up and keep smiling:)
 


FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 7/15/2009 1:40 AM (GMT -7)   
Thank you guys so much for all the kind words and for taking the time to write me back. As for your questions...

1. My doc has suggested humira as a possible option but I wanted to try entocort first, as I have heard that humira had pretty bad side effects...and would of course like to try the least risky drug before the more risky ones, I thought that made more sense given I have never been on anything besides asacol and lialda and a short stint of prednisone (like 2 or 3 weeks). Now, I have called my doc, because I have been on this cocktail for a little under a month now and there really isn't any improvement...but unfortunately my doc is on vaca, but his partner did call me back and is wants to see me so I don't have to wait another week. I have an appt Thurs afternoon.

2. I live in the Southeast:) I cannot imagine living in NYC with this disease, you are so strong for being able to do that...I used to want to live in NY but when I was diagnosed, that kinda got put to the backseat, it's such a walking city and that would scare me..but good for you for braving through it. I really admire that and that gives me some hope...even though I don't really dream of living there anymore...I'd to think that I can go visit without having to worry too much --I have some good friends there:) Chronnie-Mel, I am also here to talk if you want to, it seems that you and I have a ton in common! I am 27..and was diagnosed at 22, so around the same time you were diagnosed.

Baaaaadgut, you lost almost all of your hair???? Omgosh...what caused it? Was it the steroids? Or just the disease? Yes, that is exactly how I feel, like getting up, doing my hair and putting on some makeup would make me just forget that I am not feeling well sometimes...but it's like now there is this reminder and my outside is showing more of what's happening or how I am feeling inside and it's freaking me out!!! This has NEVER happened before, which is what's making me think it's the medicines, because even at my sickest, which is sicker than I was now, I NEVER had hair thinning or loss. When I spoke to my doc, he said it was probably the prednisone that caused that....how long did it take to grow back??? I don't think mine is tooooooo obvious bc luckily it was thick to begin with but I notice it and I guess it would be noticeable if you looked really closely. I am really curious to know how long it takes to grow back....

Also, that is a really good idea to join a support group, I am going to really look into that. I have never done that before but I think it is a really good idea. I really like being able to go on here and talk to you guys about the challenges, ect that this poses bc you guys get it. We are all going through such similar things and I don't want to burden my friends with it...I mean they know I get sick, but if I was to tell a friend about my hair, I would be afraid they'd tell others and I just really don't want the stress and frankly I don't want the pity. It's like if they pity me, I might pity me...and I think I am just mourning it and trying to get through which is healthy but I don't need external reminders. You know?

As for a boyfriend, yeah, I had one that I lived with for a long time when I was first diagnosed and he was pretty good about everything, speeding to get me to a bathroom ect, but I think in a way he sorta scarred me because afterward he kinda made fun of me about it, but he was the kinda guy that was EXTREMELY inappropriate in many situations and made fun of everything ...but it also allowed me to be comfortable talking about going to the bathroom and all of that stuff because he talked about it with me all the time, about his own stuff...and he also used to sit in the bathroom for like an hour and made it his little sanctuary, so it made me feel better about doing the same when I really needed to. But, after we broke up, he made fun of me about the smell, ect...and I found out that he thought it was kinda gross at times. I mean I know we all do it, but maybe I am just a little more bashful than most about it...it's embarrassing...and I know I need to get over my anxiety about it...because HELLO, this disease will either keep you isolated if you don't or you have to live your life around it...and I do choose to live my life around it...it's just hard when it comes to certain situations, you know. So, what I did when I broke up with my live-in bf was get a long-distance bf, complete happenstance...but it did make it extremely difficult to go see him because of the overnight stuff and even in my apartment, I am bashful to go to the bathroom around him because of the noises and smells...it's not a huge apt...but it's also not small and there are 2 bathrooms, I know, I'm silly...but that's how much of an issue it can become for me. I am trying to get past it. Sorry for sounding off...

Also, I do carry the purse spray around also, but it doesn't do that much for how bad it can get or maybe that is just in my head. I mean everyone goes...why does ours stick so much though :( I am so sick of it always stinking...can we and when I say we, I mean me (can't speak for all of you), ever have a time where it doesn't smell like someone just died??? I miss that... a lot!

I really love that I have you guys to talk to about this..I appreciate so much. I guess my post sounded like I was really depressed and I guess to an extent I am depressed...this is a depressing thing that is going on and the effects of it are long-reaching. However, I am ok and I am out there fighting and trying to get the resources to get better and just try to live a normal life. I started taking probiotics today, my docs say don't it doesn't really help but I am going to do everything in my arsenal to try to combat this and get as healthy as I can be. For any of you taking probiotics, how much do you take per day. I have read that for Chohns, you need to take it multiple times per day...how do you guys do it? How many billion organisms do you take and how often?

Hope all of you are feeling good.. Thank you again :)
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/15/2009 6:58 AM (GMT -7)   
My doctors never suggested probiotics to me either, but then again, you can't write those with a prescription pad! There are a number of studies that suggest probiotics are therapeutic for those with IBD. I guess your doctor doesn't like to read.

FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 7/15/2009 10:25 AM (GMT -7)   
Lol. I know, here is the funny thing, she is a foremost leader and specialist in the field. And...she even has an IBD clinic, as she specializes in this stuff specifically...and works for a university/research hospital. Go figure!!! I don't care, I'm going to do it anyway...I have read that it has helped a bunch of people, so I am willing to try it, what's the harm :)
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/15/2009 11:24 AM (GMT -7)   
As a caution- I had to try 3 different kinds/brand before I found one that worked for me. Or, at least it seems to be working :) Some made me feel worse.

carlos777
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/16/2009 12:38 AM (GMT -7)   
 I was diagnosed with chrons when i was 12 my  mother had just died from cancer and i became really sick i did not have any problems until i hit my 20,s then i developed a abcess in my intestine,i had surgery and now im better but still some issues from time to time, i would like to tell you you will get better this disease is very difficult i know but the more you ignore it and eat better and you cannot be under any stress you can fight it  i do not work but im 175 pounds and i look great because i try not to worry about this disease so much i know you cant ignore something when you are sick but trust me things will get better im on 20mg of prednisone and 50 of imuran a day im pretty stable but be careful of certain meds these gi doctors give you some of them will make you use the bathroom more,yogort has good bacteria that kills the bad bacteria in your intestine,try yogort and a lot of fruit trust me this will help a little..and you will date soon but your mate must be uderstanding of your needs since this is not curible my girlfriend of 8 years left after my surgery so we all must have some one that uderstands what we are dealing with,stay positive and dont be afraid of this disease i promise things will get better!!!!

FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 7/17/2009 12:20 AM (GMT -7)   
Kim, what probiotics are you using that seem to be working for you. I just got a basic acidopholus and it seems to be helping a little.

Carlos, thanks for the kind words...I'm feeling a little better today...I'm sorry to hear that your g/f left after 8 years, I'm sure it didn't have much to do with the disease given she stayed for so long. I had a bf too, it's just hard when you don't have the flexibility and it's really embarrassing, but I guess what is the alternative, be a hermit? Nope, not gonna do that :)

Take Care Guys & Girls :)
27 year old female diagnosed with UC at age 22; Chrohns 5/09
Asacol 3x's daily.
Entocort (3 per day)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 7/17/2009 6:03 AM (GMT -7)   
I use Nature's Way Primadolphilus Reuteri. Just wondering...are you going to try any of the diet change suggestions? Hope you have a good day today :)

Crohnie_Mel
Regular Member


Date Joined Jan 2009
Total Posts : 23
   Posted 7/18/2009 5:12 AM (GMT -7)   
Hey FightingChance,

Hope you've been feeling better over the past couple of days! I take Align which is a probiotic specifically to aid digestion like gas constipation diahhrea etc....its got bifidium or something like that which my doc recommended. It comes in a 30 day pack and you can prob find it at any chain pharmacy. It's not cheap for only 30 pills...but I would like to think it's helping! And yes we seem to have pretty similar stories! You are an inspiration as well, and I've been where you are right now...and you are definitely strong enough to get through this rut --- I truly believe that one's mental state effects their physical so stay positive! You are young and have so much to look forward to! And be glad you are not in NYC...I grew up here but it's not my fav place hah I would kill for some countryside! Much more relaxing! Also, I have been keeping a food diary...writing exactly what I eat daily as well as how many bowel movements, level of pain etc. Sometimes our lives are one big blur esp. when you're sick so maybe writing it down will help you figure out what is and isn't working for you? Again, hope you're feeling better!!
s
Melissa -- New York City
Diagnosed with Crohn's in 2004


baaadgut:(
Regular Member


Date Joined Nov 2008
Total Posts : 22
   Posted 7/20/2009 5:30 PM (GMT -7)   
Hey Fighting Chance,

Did you but that new outfit yet???lol I am afraid to say it took a few months for my hair to grow back. Just as new stuff started growing some of the old fell out. I have a wonderful hairdresser who did a complete make over on my hair ( it was long, thick and blonde) and we went short and dark. Nobody knew if my hair was thinning or if I just had a wild impulse( try it you might be surprised) it is now long again but I stayed dark. They are postive my hair loss was from extensive steriod use and from being malnurished for so long...I also broke a few teeth which they think is from malnourishment. You seem like such a strong person so try and hang in there...we are all rooting for you.

Take Care
Badgut:)
 


almost30inMI
Regular Member


Date Joined Jul 2009
Total Posts : 61
   Posted 7/21/2009 6:55 AM (GMT -7)   
Hey Fighting Chance,

I agree with Crohnie_Mel about the food diary and keeping track of BM's and pain. This has helped me stay away from foods that upset my stomach and also will help the doctor to understand your BM's and pain. Don't be afraid to reach out to your close friends and let them in. Its a running joke that when you have a smelly fart that you say "my friend has crohn's" We all laugh about it. My husband is very understanding when I need more time or am to tired to go do things. I have been on Remicade for a few months and feel great. As far as the deathly smells, when my CD is under control, the smell goes back to normal. The smell was an indicator of a flare up.
Hang in there and keep a positive attitude. I have found that most flare ups are from stress nowdays. Keep your stress level low if you can.
Diagnosed with Crohns in 1998. Been on and off pred, entocort, immuran, asacol. Currently on Remicade every 8 weeks and gotten off all other medications!!

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