I now believe Crohns is real.

[Starla86]

I have been ill for about 2 years now and was dx with Crohns in December of 2010. I had chronic diarrhea and lost about 30lbs. I had dealt with that for so long before being dx that it became my way of life and giving it a name didn't really change anything. I was put on Remicade bc of the severity of the disease and bc I am allergic to sulfa and my DNA can't handle 6mp. After a few months I was feeling better than I had in years, I was able to even start taking my son to the park again But of course I was naive, I woke up on sat 6/25 and cleaned the kitchen and made pancakes for breakfast. I ate a couple with my son and then it felt like someone was pulling a string out of my belly button. It was the weirdest sensation that I have ever had, it wasn't painful just annoying. My fiancé woke up and so I went to lay down to see if it would go away and as soon as I did it felt like I was stabbed in the stomach. My fiancé immediately called an ambulance and they took me in. I gave birth to an 8lb 4oz boy naturally and that was nothing compared to the pain that I was in. They did a ct scan which showed that my entire abdomen was full of air so emergency surgery here I come Long story short I had 3 fistulas that ruptured which in turn caused about a foot of small bowel to be removed and most of my ileum and cecum as well. I was septic and my 14 inch incision was left open for the next 7 days bc they didn't think I was gonna pull through mainly bc I had been on remicade and had virtually no immune system. They went back in on day 8 and closed me up after receiving 4 units of blood. I proceeded to have a PICC line put in and placed on TPN for 11 days along with the ever loving tube down your nose sucking up all your stomach contents. Day 12 comes around and I get actual ice and it was amazing to see!! Then we progressed to liquids and soft foods. I have been home now for almost 3 weeks and am down to 98lbs. I was fired and have lost my insurance. I have applied for disability as was suggested to do by my GI but when your 24 years old it tends to be difficult to get. My whole life just shattered in front of me and I don't know what to do. I am lucky to be alive is what I have been told by the surgeon but in the same breath he tells me to get my affairs in order bc this will happen again. So is this my life now? I will be 25 in 2 wks and where do I go from here? I miss being able to hold my son or even do a damn load of laundry. Where is the light at the end of the tunnel?

 

[Jennifer]

Your surgeon told you to get your affairs in order because it will all happen again? How rude! Talk about not having a bedside manner! No that is not how your life is going to be from now on. Crohn's is treatable and with the right medication you should be fine. Surgery is always a possibility after your first one but that could be years from now and it may never be more than another resection. I'm still in remission after my resection 12 years ago. I've been on medication ever since.

Disability is not impossible but I do recommend a lawyer if you do get denied and have to do an appeal (and please DO appeal the decision cause 95% or more get denied automatically). All they do is take a percentage out of the winnings of your case and its generally small (and you don't have to pay them if and when they win your case, mine let me make payments). I had to get one once a few years back because they decided I was no longer disabled. Sure I may be in remission but Crohn's is a chronic illness and I need my medication and I can't pay for it and doctor visits without the insurance that came along with the disability (I get SSI and have Medi-Cal). I was pretty young when I got SSI but I'm 29 now and I know its not impossible to have an income be it disability and to live in remission with Crohn's. Hang in there, you're going to be ok. Recovering from surgery takes time. Mine took over a month, maybe 2 months to feel somewhat normal.

 

[Silvermoon]

Something that caught my eye: you were fired? Any particular reason (other than the fact that you had EMERGENCY surgery and could NOT return to work right away)? I would inquire into this, as this does not sound right - another girl on the forums (Welsh-bird) jsut went through a hearing with her employer as they were about to terminate her as well... you can see some of her story under "Welsh-bird - Serious" towards the last few pages of that thread....

Secondly - no your life isn't over. I was diagnosed at a very early age - and had fairly minimal problems when I was younger - so I was able to finish my education and found a great job with awesome benefits - this has helped tremendously - but sadly - I am one of the very lucky few that is actually in that particular situation.

I am now 35+ (*cough*) and am currently on disablility (through private insurance) and won't be returning to work for a while. That being said - I was able to work over 10 years (witha few minibreaks in there due to flares) and manage my life accordingly. Fortunately (unfortunately??) I have no children - just dogs and a wonderful husband - so I have not had that "burden" (quotes, as I don't pretend to imply that children are ever a burden - they are my favorite patients actually) that I have not had to worry over - I have been able to be very "egotistical" in my health and care for only me.

I do remember my first surgery - very well - I was about 19 at the time - and scared absolutely spitless. I was 400 miles from home and family (who couldn't be there 24/7) and I remember thinking life was over.

But guess what? I got over that surgery - and you will too. I agree with Crabby - I think your doctor has very sucky bedside manner - but he does have a few points....

The research shows that a majority of us who have had to have surgery for IBD will probably have surgery again within 10 years. There are always the exception - and with more and more research, treatments, and medications available, these numbers are dropping - surgery is far less common these days than it was when the (older) ones of us who have dealt with this forever were first diagnosed.

It sounds like you haven't been on very medications, so there are STILL lots of options for you to MAINTAIN your disease (check out the health and wellness forums - they seem a bit daunting right now after surgery - but once you get to feeling better - and you will - there are lots of really good tips in there).

For your first surgery (heck, even if this would have been your 21st surgery) 4 weeks is not an unreasonable amount of time to still feel the way you do, as it also sounds like you were in rougher shape than you thought you were. It is frustrating, and scary, and aweful, but please give it time... as others keep telling me - "baby steps", and eventually it will come to you.

For now - take the opportunity to rest. I remember my hubby coming home one day after my second surgery (or maybe it was third - I can't remember now) and finding me sitting at the kitchen table crying. It was about 6 weeks after surgery, and I was trying to sweep the very small kitchen floor - and got tired half way through - I was so depresssed at that!! Hopefully your hubby is a bit understanding and kind and can maybe help you a bit with chores. It will never be done to your standards (my hubby is awesome, but men can almost never do it as good as a woman can - although come to think of it - my mother doesn't do it to my standards either! LOL!) But at least the "important" stuff gets done - your t-shirts may be wrinkled cause he wasn't able to fold them right out of the dryer - but on the other hand - who is really going to see? And anyone important enough to you will understand (hopefully) .

And that is going to be something that comes with time as well - patience and a tiny bit lesser of a standard as to how clean the house is. I used to be almost obsessive about clothes being extremely neat and pressed, house so clean you could literally eat off the floor (or out of the toilet for that matter!!), and so on. I would imagine with a child you have learned to let some things go. Now may be a time to learn to let a few others go. I am to the point where as long as the cloths are clean and the kitchen dishes do not have mold on them, then life will continue.

Hmmmm this seems to have turned into a very long winded post (so sorry about that) - but just going through my 5th (6th??) surgery and having it totally floor me - I hear where you are coming from....

In the meantime, I think you have two important things to do right now: rest, is the big one - rest when you can. Number two: I would really check into the being fired thing... can you go to some kind of labour board in your province/state/ country? You may not be in a condition to go back to work for a few months yet - but having something you know you can go back to - rather than having the thought looming over your head that when you DO get better you have to look for work too - can help a bit to set the mind at a bit of ease - plus the fact that if it is a wrongful dismissal and they have to take you back, holefully the insurance can help a bit.

Keep in touch and let us know how goes.

Warm wishes.....

 

[girlie tinks]

hi sweetie, i was very moved by your story. i was diagnosed with crohns in jan 2010 after being admitted for emergency surgery which resulted in me having a permenant iliostomy.
i really do understand how you feel!!! i too lost my job which was a carrer i had built up over 17 years, i went bankrupt and had my home repossessed. i was also going through a terrible divorce.
what i want to do is encourage you that you will get better!! life will be different but you can turn it around as use this experience as a positive. Since my illness ive re married , and ive gone back to college to study floristry. im happier than ive been in years even though life at times is a lot harder. I appreciate the little things more than i use to.
people dont understand what it feels like, because iots like an invisable disease. i still get really tired, and have recently began to relapse and so i need to go onto steroids and other medication with crappy side effects.
you will hold your baby again, and you will have wonderful times in your life again . i really do understand how you feel!!
it took me about 6 months after surgery to be able to go outside the door, but now i can , and even go out on my own. something i thought i would never be able to do again!!! youve been through a hell of a lot, but there is light at the end of the tunnel, i promise you!!! take care, with love, tina x

 

[Jennifer]

Totally forgot about that Silver! I read the fired part too but got distracted by what her surgeon said. Ya there's no way you should be fired from having these health issues. You're in the US and they cannot just terminate you for not showing up due to being ill and having surgery no less. Definitely nip that in the bud and apply for unemployment for the time being because that's not a just firing.

 

[xJillx]

My heart goes out to you. This is surely a challenging time, there is no doubt about that. But you must have hope. Once you fully recover and start a new treatment plan, you may be blessed with years of remission, just like Crabby. Try to hang in there, Starla!

 

[chrisnsteph1022]

Oh, you poor thing. You've been through hell and back. I hope things start looking up for you soon!

 

[Jer's Girl]

Yesh, you have been through a lot! I agree with all of the advice you have already gotten, but I just wanted to add that things will get better, and this disease can be completely manageable. We all go through bad time, but remission is possible. Hold on honey.

 

[Goldfish]

I cant give you as much advice as others (seem to be saying this alot at the mo because i am new to it all) but please keep your chin up and stay as positive as possible. Even before Crohns I had a huge problem at work with a bully for a boss (not necessarily saying that your boss is a bully) but I had to put my fighting cap on and not let the man get away with it. He backed down and made me redundant (which at the time was what I wanted) and ultimately I won. You need your positive fighting head on to look forward and you will get through this tough patch. Health first and and fight the work decision if needs be (depending on the circumstances of course) second. Remember who is number one in this whole situation. You! big hugs :ghug:

 

[Starla86]

I forgot how much this forum means to me. I have only been here for about 7 months but I am so thankful for the support and genuine hope that I receive here. To know that I'm not the only one going through this is comforting although sad that others suffer as well. Pertaining to my job they said I was let go because I was unable to perform my job properly, I work for an Optometrist as a technician and optician and am now scrounging up the money for Cobra until I know if disability is accepted. I am looking into unemployment but I need to fully recover first. I'm young but have been on my own for a very long time and I can't shake the failure feeling. I've put the burden of ends meat all on my fiancé and I don't know if it's pride or what that makes me feel that way , but it sucks! So it's one day at a time right now for me and acheiving each little mile stone helps. Today was making dinner for my son, small but it meant alot to me thank you all so much, knowing that I'm not alone is truly a light for me -- Sarah

 

[toml99]

Hang in there. There is a good chance that your situation is covered under the Americans with Disabilities Act.

There is a good summary on about.com - I don't have enough posts to be able to include a link, but you can Google "crohn's AND americans with disabilities" to get the link yourself.

Note you can file a complaint with the EEOC without hiring an attorney, which simplifies the financial aspects for you. In addition, if your employer terminated you because you are unable to perform your job duties even with the special considerations they owe you, then they have probably set up a scenario for you to collect disability -- i.e., your employer has "proven" that you are disabled.

Best of luck to you.

 

[kris10]

Wow your story really touched me, i have a lil boy and there's days i stay in bed. Hope you feel better.soon

 

[AndiGirl]

I really can't add anything more, but I just want you to know that we are here for you at this forum.

 

[Goldfish]

In your first post on this thread you had one smiley and one sad face. In your last post you had 2 smileys. Lovely to see that improvement in itself for you. I love the expression, "When God closes a door, somewhere he opens a window" If your not religious you can change God to something else but you get my drift. So glad you achieving your milestones no matter what the size

 

[CrohnsGuy]

Just thought I'd share one of my favorite quotes I turn to when I find myself worrying about life:

'Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty, lies opportunity.' -Albert Einstein

 

[Lydia]

I went septic once and woke up with a colostomy bag. Lost about 18 inches of my large bowel after it abscessed, perforated and spilled feces into my abdominal cavity. Its a terrible place to be.

You can bounce back. It seems so far away right now, I am sure. You need to take baby steps to recovery. Having a good GI is an excellent place to start. If you dont like your doc, fire him and find another.

Feel better soon.

I was told by my suregeon that 70% of patients will get surgery for crohns again at sometime in their life after they have one surgery. Its been over 5 years now since my colostomy was reversed and I am still hanging in there.

Health insurance is a must for a crohnie for sure, because odds are it may happen again, but according to my surgeon there is a 30% chance it wont. Thats not terrible odds. I hope to be in th 30%.

 

[KaLa]

Starla, I hope that you are starting to feel a little better. Even though you have been on your own for so long, this is not a failure - not something you asked for or deserve. You are a survivor, and just being there for your son and watching him grow - try to take that in every moment even if you can't pick him up right now or play with him like you'd like. I hope that your healing goes fast.

 

[la la]

I'm so sorry you are feeling so bad & going through so much! Your story took me back...it all started for me when I was just a little younger then you are now. It went from bad to worse & I remember feeling like I was not going to see my babies grow up or even have anymore for that matter. I am now 39 and I can't believe I went through what I went through. It sucks & it's not fair but it can get better. I still have times when I feel pretty bad but they are few & far between now. I am on disability at the suggestion of my GI also. That was hard to swallow at first. I also received denial letters that had the worst responses from our social security office! I did get an attorney & thankfully I didn't have to mess with them or their insults. I then just made my job in life going to my appointments,researching meds,doctors and whatever else I needed to do to get better for myself & my family. I did have another child & actually felt really good when I was pregnant. (not everyone does) I am living a life now I never thought I would have. It was a hopeless time back then & I hope you find strength to get through it & fight. This website is a wealth of knowledge & you will find some meds/surgeries work for some & not others & that's ok. Keep your chin up this is most likely the hardest part you will go through...((hugs))