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Posted 1/11/2009 5:40 AM (GMT 0)
Hi Everyone,

My name is Melissa I am 19, coming up on my 20th birthday pretty soon. I was dx'd with Crohn's almost 7 years ago when I was 13, and then fibromyalgia when I was 15, and have been living a rollercoaster of a life ever since. It was at times difficult to get through school and part time jobs with my health being so unpredictable and often times so unforgiving. However, it all seems like a walk in the park compared to how I have been feeling since October. To make a long story short, in October it was decided that I needed to have 10 inches of my small intestine removed after in-hospital IV prednisone treatments proved unresponsive. I don't know what I was thinking, but I somehow believed that surgery was going to be the cure-all for my pain and discomfort and that everything would be so great. I could not have been more wrong. After surgery, I spent the recommended 6 days in the hospital recovering, I was in pain, and feeling pretty weak, but I was told it was all par for the course, and things weren't unbareable, so I went along with it. Two days after returning home I found myself bed ridden. I was in so much excruciating pain and discomfort that I actually had to spend 30 minutes crawling to and from the bathroom, only when I really HAD to go. It was terrible and I couldn't eat, the only solace I had was the 2 hours of sleep at a time I would get from taking oxycodone for the pain. I called the doctors office the next day and was told that it was probably me being sick from the oxycodone, and to try laying off of it and try to eat a little something (since I hadn't been eating or drinking anything). So I did, I had about 5 crackers before it all came back up, I was miserable beyond imagining. I realize now that I'm drawing this story out in much detail so I will try and shorten it up. It ended up I had a wound infection. The nurse from surgery had to rip open the bottom of my incision to allow for drainage (very painful). So for the next month and a half i had an in home nurse every day come to my house and "pack the wound". All the while I had only dropped two of my college classes for the semester and was still attending 3 of them. It was a very hard time for me but I made it.

 

Anyhow, since the surgery I have not experienced any pain and/or nausea free days. I've been back in to the ER where inflammation was found and I am now on Flagyl and 6mp. I am about to start the spring semester at college, and I am depressed, distressed, and discouraged. After that long rant I would like to know if there are some people out here around my age who are trying to cope with college, internships, and part time jobs while barely feeling as though they can get out of bed in the morning. I'm sure there are some of you out there, but right now I am feeling very alone. If anyone could give me a shout that would be so great, as nobody around me at home understands any of what I am feeling.

 

Thanks so much,

Melissa :-)

Posted 1/11/2009 5:48 AM (GMT 0)
Also not specifically anyone my age but just anybody who wants to offer a peace of mind would be great
Posted 1/11/2009 5:49 AM (GMT 0)
Melissa,
I just wanted to say first of all that I admire you very much for continuing to lead a normal life in spite of the terrible things you have gone through. I know this disease can be so rough...there have been too many times where the only sleep I found was induced by painkillers!
I just started my Spring semester last week, am taking environmental sociology, cell biology, precalculus, and computer science. I'm trying to keep a positive attitude since it seems to help, but I know this doesn't erase the stress that comes with school. I can't seem to find a job that will hire me ANYWHERE, and I really do need the money! My point being, I feel like we're in the same boat somewhat...and I'll be on here everyday as usual. So, if you ever need someone to talk to then someone there will be.

I'm so sorry that you're having to deal with a flare right before school starts..I assume you're already registered with your school's Office of Disability Services? And that your teachers should be able to make certain accommodations based on the stages of your flare. I had some good diet recommendations from other members here like drinking peppermint tea(a big cup before bed helps soothe the stomach), cutting out sugar/gluten/wheat/high lactose diary/etc., and I stopped drinking ensure which oddly enough, helped. These things have helped me out tremendously and I am on my way to recovering from a year spent either in the hospital on constant painkillers or sleeping 22 hours a day on my couch wondering when on earth things were going to get better. This site has also been a godsend! The support of the other members has helped in ways I cannot sufficiently describe! They are wonderful, amazing people who will help you out whenever you need it.

I know things will be rough for a while, but hang in there is all I can say...we'll be here for you. Please, rant and rave your heart out! This is a great place to do it and it really does help.

In any case, please keep us updated if you're able!
Posted 1/11/2009 5:53 AM (GMT 0)
Thanks so much for the response, I honestly just smiled for the first time in a while just hearing from someone who knows where I am coming from. I am the kind of person who rarely opens up to the people around me about the true physical and emotional effects Crohn's has on me, and lately I have tried to open up to a few family members and close friends, and I know they care but they seem to offer halfhearted responses that leave me feeling very much alone.
Posted 1/11/2009 6:03 AM (GMT 0)
I know...and I realize they do care, but I can't even begin to imagine how they could understand without being in our shoes for a little while. And some just have the wrong idea!
The loneliness is one of the worst parts sometimes though ugh! It seriously makes me want to cry just thinking about the sadness all of us experience from this disease. I think it's safe to say that the majority of us have more than the usual number of middle-of-the-night all out breakdowns because of the great burden caused by our sickness. I wish there were more we could do for each other sometimes. Some of us on here were dreaming about a Crohn's community haha...if only.
I know it isn't the same as person to person, but you won't be alone here. I really do wish you the best..
Posted 1/11/2009 6:22 AM (GMT 0)
:) I really appreciate hearing from you. I'm going to try and get some sleep now but I will be back tomorrow I am sure!

Thanks again and best wishes to you as well.
Posted 1/11/2009 1:36 PM (GMT 0)
Hi Rightoutstraight Welcome to Healing Well there are quite a few of people here with crohn's that are in college .Perhaps getting on a maintenance med will help bring you around along with the Flagyl.Now you have your surgery behind you perhaps things will start to get better. I stayed on low roughage after my surgery last Jan. and have had no pain since then. I had gotten an infection too that cleared up about 10 days after being on antibotics.

I know that being able to share the bad and the good here makes a big diffference in my life. Glad you joined us. lol gail
Posted 1/11/2009 2:58 PM (GMT 0)
Righoutstraight, just wanted to see how you were feeling today. I think we had the same idea last night because I passed out pretty soon after being on here(minus the time my fiance wanted me to play video games with him haha..).

Also, I was just wondering how many hours you're taking for school? I've always been curious at how much others take on..
I thought I needed to keep the normal number of hours like everyone else at first, but then I realized how ridiculous those expectations are. And my university still thinks we should all try and graduate in four years! Fat chance.
Posted 1/11/2009 3:40 PM (GMT 0)
Hi Rightoutstraight, and welcome to Healingwell. As you can see we have alot of wonderful and supportive folks trying to live life with this darn disease too. I have had two resections myself and both times I got an infection in my incision. I had to have the WHOLE incision re-opened and packed with the wet to dry packings and missed about 8 weeks of work each time. Not a fun time.

I do admire the tenacity you have to continue going to school. And I am sorry to hear though that you are flaring again so soon after surgery. Most don't have bad times after surgery and are usually feeling better afterwards. I am wondering what your diet is like. After surgery I had to really change the things I ate. I just didn't digest things the same anymore. I too eat a low residue diet. Easy to chew, easy to digest. You can google it and get an idea of things to eat and not eat. Also some on this board have had success with the SCD or Makers Diet, you might want to check those out too, but they are very strict diets and to be honest not everyone has good luck with them. But getting the junk, sugar and processed foods are important to get out of your diet. Also, I am a firm believer in people always taking some type of maintainence meds at all time. The microscopic inflammation can be going on and you not even know it. That happened to me and ended up with an emergency resection, so always take a maintainence med. Also, I am also a big believer in Probiotics. We tend to have a bacterial imbalance in our intestinal tracts and the probiotics help to even out the bacterial field. I take a Lactobacillus type and it works well for me.

I hope I was able to help a little and we look forward to hearing more from you soon.

Hugs,
Gail *Nanners*
Posted 1/11/2009 11:12 PM (GMT 0)
Hey there! I'm 20, and in college... Always good to meet someone around my age. (I know how that alone feeling can be... I mean, it sucks that we all have this disease, but at least we don't have to suffer alone...)... I'm with LMills... One of the best things you can do is register with your college's Disability Office... You'll still have to talk to your professors about the fact that you have Crohn's disease (which could cause you to be hospitalized for an uncertain period of time), but this way if, for some weird reason they decide to give you trouble, you have the Disability Office to back you up...

Withdrawing from classes due to medical reasons can be pretty disheartening, but just know that you can take them again next semester... or the semester after that, whenever they're available... It doesn't matter how long it takes you to finish college... whether its 4 years or 6 or more... You have a difficult disease, so its understandable that it will slow you down...

I had to medically withdraw from all of my classes last semester... (I also backed out of my job on campus because it was just getting to be too much... I lost a job before that when I first got sick in 2006 because I was in the hospital too much) and then because of the fact I might have to pay back all the financial aid, I had to take a class late in the fall... But like you, I made it through...

I'm doing a lot better now... and looking forward to my classes this semester... *Starts... TOMORROW! YAY!*

Oh... How do you think you're doing emotionally right now? Don't let yourself fall too deep into depression... Don't be afraid to ask for help (such as seeing a therapist or psychiatrist or just tell you're regular doctor how unhappy you've been)... This disease can really take a toll on your mood and even your personality (especially if you're on prednisone)... and you don't want to wait too long to get help.... I did that, and I ended up checking into a stress center because I got so bad... :(...

But again, I'm doing way better now... :)... I hope you get to feeling better soon, too...
Posted 1/12/2009 10:46 AM (GMT 0)
hi melissa, welcome. well im an old man of 45 but i was diagnosed at 20 give or take a bit. so i can remember the good old days.. sometimes we get dealt a blow like an infection etc.. but we survive and go on.. sure its dicouraging, but it builds character! ;-) . yea i know , its a cliche' , but somewhat true..your post was not long at all. we can go for pages! hang tough and keep us posted, someones almost always here.
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