Feeling Alone with Chronic Illness and Its Mental Toll

Do you ever feel like this will beat you mentaly. I sure as hell do... it's hard to feel sexy while you have a bag hanging from your body, sounds stupid, and whinny and it is but no more 2 piece bathing suit, no more feeling pretty. It's hard knowing it's something your gonna have to deal with for the rest of your life. Changing bags, appliances, paste, just everynasty thing about it, my problem is that it hasn't fixed me yet and im kinda pissed today. Went a new Dr. because i was in a hospital and had to be transfered and id never met him before. He looked at me with no records, no info on me and said im sorry you just have a "Bad Gut". Now, I have lived 8months out of 2009' in the hospital. I miss holidays, my sons 4th birthday and yeah it just really pisses me off today. sorry, that's being a real b*tch. Anyone ever feel like know one cares? I/m tired of living in the hospital and being able to be at home for a week or two and having to go back for 2-4 weeks. Not far to my family or myself! I know whawhawha. i gotta talkto someone though.

Yes, yes, yes. I can empathize fully with you, and I know we are not alone in this regard. After a stroke of luck, I found help in an odd sort of way. After getting my ileostomy, I was having spinal problems just to make life more unbearable. I had made an application to go to a pain clinic; it only took a year to be seen. Of course, I had to see a psychologist and then an appointment to see a psychiatrist who turned my life around so much I said the hell with the pain clinic. This woman looked at my medication charts and asked, "What are you doing taking all these meds?" I reminded her I didn't prescribe them for myself, so she picked up the phone and started changing some, cutting out others. Then we got down to talking, and I can tell you this, it was the beginning of a change for the better. At least she convinced me I wasn't crazy, but I was certainly mismanaged medically. My ileostomy was due to a prior surgery that went wrong, and a month later, my colon was dead; therefore, the ileostomy. So this kindly woman said I was doing pretty damn good considering what I had gone through. Had I not seen and talked to this woman, I hate to think what would become of me. Then I found this site, another miracle, where I could vent and found help and empathy. I tell you sincerely, here you can ask anything, vent your little heart out, as I did, and be assured you too will find people of like mind. So keep the faith and remember we're always here, and nothing you can do or say will shock anyone. OK, all the best, Ed

Thanks for the encouragment! After i had read your reply i read your story, and you have been through much more than I have, I've been through alot at 26 but, most of the time i consider myself lucky to be alive, most of the time. You have an amazing spirit, i had read your joke and to be strong in the funny section earlier and it made me laugh. If you want to know why i'm a little crazy you can look at my proflie and see why, were still lookin for a cure and it's nice to be able to talk to people who are going through chronic illness and have what i call the poop bag, oops lol. They have myself on alot of medication right now also. We tried everything, going off, too much, too little and just the right amount, enough to be able to handle my kids 4 and 8 and handle my husband haha without drooling. But your right about the meds, we don't write the perscriptions, and that's one misperseption some dr.s have! Thanks for writing me and hope to hear from you again. I hope you are doing and feeling well and I def. hope things get better than they are because they can always be worse but they can always be better, if yha know what I mean! haha lol write you soon, stay in touch
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Sorry I'm just learning on how to do this, i'm really computer illeterate. lol

Hya Kat,

Before I start, just a word of warning, I can be a complete nutter at times, and I either make people laugh or piss them off right royally, depending on whether they have a sense of humor or not.

Now to the issue at hand


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Many moons ago, more like in 1998, after the second year of battling Crohn's disease, I was sick as a proverbial dog. See, I had a severe case of Crohn's disease which destroyed my colon within 2 years. Prior to this, I was actively working, driving trucks, and operating machinery and chainsaws, as well as playing American football. After I started to get ill, I found I could work for around 6 months and then I would be admitted to the hospital for steroid and IV therapy to get the Crohn's under control. Constant diarrhea, (buggered if I can spell it) sore arse from wiping it 100 times a day, joint pain, the corners of my eyes splitting for some reason, and the fatigue was terrible. Usually, I was in the hospital 6 - 10 weeks and then I was fine till the next bout of illness. In 1998, after working for 7 months and feeling good about life, my disease raised its ugly head again but this time it hit me very hard. I had the squirts every time I ate, would vomit nothing, could hardly walk and just going to the toilet left me breathless and sweaty, kinda like sex but that's another story. I was admitted into the Queen Elizabeth Hospital in Adelaide, South Australia on January 15, 1998. I was discharged in July and was home for 2 weeks and went back in. They finally discharged me in December that year and I have to say it was a long year.

So staying positive isn't easy. My sense of humor has always helped me, I laugh at most things and at times to hide my pain and feelings. But I still soldier on. I met my wife 7 years ago after chatting with her on the net and I have been very lucky. Since my ileostomy, I have worked almost constantly, except for 2 major surgeries I think I have had about 6 months in the last 7 years where I haven't worked. Lately, I have been undertaking studies to gain my security license and as we speak my old boss has asked me to go back and drive his truck till my surgery on the 15th of March.

Venting is a good way to express how you feel. The folks here in these forums have all had their own battles and they understand how you feel. It's okay to get angry and sad and hurt and feel unpretty because that's how you feel at that moment. The one key to moving on from there is never let how you feel dominate your life. There's so much to do and you have 2 kids that need your guidance. What better way to show them how to deal with life than to let them see how you are coping with your own adversity.

Stay strong Kat, the people here will come to know you and will share their love and empathy to help you through.

Till next time

Take care and big hugs to ya,
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Woops wrong emote
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Woops
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hehehe

Words of Encouragement from Ostomy Advocates I Hollister

Hey Sweetkat, Quite alright, sometimes you need to blow 0ff some steam  I had a clostomy done in 2008 but way before thatin 1987 I had  cancer/lymph node dysection Causing me to fill my pants  Somtimes this bag is the best thing that ever happened to me Other times I Cuss the bag, If you want to blow off steam this is a great place to do it.

Just you vent away my lovely... I've got major(and probably useless in the end) surgery coming up, and am praying I will be able to access this site from the hospital tv internet as I will be stuck in London with no visitors and will be feeling very sorry for myself, so I suspect if I can access you all I will be venting big time! We all generally have some horrific story to tell of medical mismanagement, chronic diseases etc etc  but use this site to get some answers and express how we feel.... Whining allowed! Take care, Rach xx

I know exactly how you feel, I guess it is human nature to want to feel good about our bodies and be proud of them. Hence all the diet shows, drugs, etc. We are really never happy with our self image even on a normal day. But to have a bag hanging out of our stomach grosses us out. EVEN though we know it has saved our life and we should thank God for that, and I do. But that doesnt change how it looks, you cant candy coat it, it is what it is. I have two bags hanging out of me, one on each side of my poor belly button who is outnumbered! I have to tape them up with masking tape to get in my hot tub bath, and then can only fill it up to the sides of my legs...or take the bags off, then they do their thing in the water...not good. I myself have a fistula, or a tear in my intestine. It drains yucky acid stuff out my man made vagina. It also causes my butt to bleed from the raw skin it makes. It ate the paint off the inside of my toilet seat! Nasty stuff. The surgery to repair it is worse than the actual fistula. 10 hours of surgery, 6 wks off work, and no guarantees it will heal due to radiation. Also, might not be able to eat food anymore and be on TPNs for life. SO I cancelled the surgery, decided to tough it out with the draining. Sometimes it stops completely, sometimes it drips. You never know, still better than surgery. You are young, and I hate that for you. I guess in time we get used to it and accept it, but we dont have to LIKE it. We can be positive and laugh and make fun of it, but all and all, it still hurts. You have a husband (mine dumped me) and two children who depend on you. Get lost in the pure joy of your children, soon they will be grown and gone. I wish I had taken more time with mine when they were little, now I have a granddaughter to cherish and enjoy. I will keep you in my prayers, hang in there. This is a great group of survivors. Jeanie in Georgia

Thanks so much, actually my kids are my inspuration, My oldest calls me super mom, I would like to like I never show them signs of defeat, I hope I don't! Through all of this I hope I show them that you can tackle anything and survive as long as you have the will, hope and faith. I think that's why this is such a great site, i don't complain at all to my family or friends, i have one person and that's my sister, well and you guys. My husband doesn't really understand where i come from and so it's hard not to wear your heart on your sleeve i guess you could say, we're still looking for a cure, i'm going to the biggest medical center in the world, Huston Texas Medical Center, the thing is that I get really excited and it's almost everytime I get my heart broken. I'm so sorry about your struggle, and you remind me alot of my husband(the pissing of or making laugh part) lol
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It sounds like your still fighting the battle. To everyone who's replied to me I have read their profile, because if you all are taking the time to help me out, I want to be a friend too! I want to understand also. I'm glad the medical feild has gotten you as far as it has, but sad that you had to go through some pretty hard core sh*t. The hospital to me is like a jail, not that I've been in one but between the pain and saddness that goes on in there, hearing a roomate is dying after you get to know them or just know that everyone has their demons is sad to me. Keep in touch and I'm super glad you're doing better and I hope better things are to come!
   My thoughts,
Kat
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Hang on in there Baby---Yes it does get Better!!!----But in the meantime a big hug
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from the " Rainy Island Kingdom"

Thank you, big hug accepted! It's so nice to be able to vent and I hope you all know you'll always have a friend in me and will always be able to vent even about the little stuff, even the big stuff! Todays a better day just knowing that there are people out there who care.
Hope totalk to you soon, and I know have a fully membership, so I'll keep in touch.
  Your friend,
Kat
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It's the "Bloody Freezing Island Kingdom" today.

You hang in there girl, things get better but we've all had times when we have felt really low or angry or whatever. I just remind myself that before surgery my quality of life was so poor that I knew anything would be an improvement.

So a big hug for you lass.

Kat I understand, we have been there, it not good and you have every right to cry, bitch, moan and just be pissed.  I was so sick & tired of being sick!  People often tell me how strong I am how much I have survived how much they admire my strenght, if they only knew that inside when I am not using my smart-ass humor, i often feel very alone & just want to be taken care of, But since I no longer have that as an option I guess I just continue to use my humor,  You look like a beatiful young lady I can fix it but I sure can listen, suport & give you encouragement!
hang in there!
eddie

Hi Kat.  I don't think I could add anymore to what this wonderful group of people has already shared with you except to let you know that I too am here if you ever need someone to vent to.  I've felt the same ugliness and anger and discouragement that you have.  I have looked in the mirror and just cried my heart out at the reflection looking back at me.  But Kat, the kind and caring people on this site were here for me and they have shown that they are here for you too.  It will get better so you just cling tightly to and love on those precious children you have been blessed with and remember to call on us whenever you need to.  Take care, Debi

Heya SweetKat!!  Remember you can count on me as well whenever you need to vent ...I'm a great listener....
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  We all have so many things in common in here, we're good medicine for each other I think.  ~Hugs from your Doe

i know exactly how you feel sweetkat,evryone here does,i seen your photo,and you may not feel sexy but you are,whether you relise or not,i know theres no more two piece bikinis,but one piece is back in fashion,some quite cool ones out there,you seem to have quite a upbeat personality,your allowed to have off days and your not being a bich,try not to let it defeat you xx

My life would have been wow if I didn't have a urostomy. I don't even think I'm gonna get married.

Thanks girly, I agree.... good medicine! I appreciate your thoughts, I'm a great listner too and you can also vent to me as well! Hope you have a good day today ,
  Kat

Actually, after my 2nd child I wasn't able to wear a 2 piece and was kinda used too it but I got back in shape and had started wearing one before the 2 surgerys, but you are right on the dot when you say there are some damn cute one pieces out there. You gave me a boost of self esteem, you too are pretty so i'm sure you know how it is to not feel that way some days, or you may have defeted this mentally all togther. Wouldn't it be awesome. Now they're thinking of putting a feeding tube in so i feel like a little bit of a tube girl I guess you could call it. But thanks again so much and I hope we can become friends, as I have vented to you all I hope you feel you can do the same, getting ready to check out your profile just to understand what you've been through as well. I hope you have a good day and thanks again! Your friend,
  Kat

It's the "Bloody Freezing Island Kingdom" today.

You hang in there girl, things get better but we've all had times when we have felt really low or angry or whatever. I just remind myself that before surgery my quality of life was so poor that I knew anything would be an improvement.

So a big hug for you lass.      
Just remember as i have unloaded on you I hope you feel you can do the same and I hope a new friendship can come about. I hope you are hanging in there as well, take care,
your friend,
Kat