My name is Chad, I am new and need help.

[Chad K]

My name is Chad, I am 23 years old and I feel like my life is over. I have a lot to say, and if you have the time, god bless you and any help you can give me, because even as I write this I am in tears over the pain I go through each day.

I've been reading this forum for a little while now, and your stories have been incredible. I don't know how some of you can get through this, I don't know how I've been getting through this. I've been in the hospital four times. I was just recently in the hospital for about a month due to extreme pains to the point where I could barely breathe. When I was in the hospital I felt like I was tortured. I had numerous scans and procedures done to me, was being fed through a tube through a Pic line that went through my arm to my heart. One day in the hospital the Pic line got too close to my heart and they had to shock my heart back to rhythm and put me on the cardiac floor. There I was with tubes all hanging out of me, a heart monitor, a tube that went through my backside to a spot near my intestines to drain a pocket of puss they found on the scan from an infection, a tube down my throat and celebrating my 23rd birthday. Being fed through that and not eating for weeks still didn't get rid of the inflammation and pain. My white blood cell count was at 22. Finally, after numerous visits from the doctors and surgeons there at Mission Hospital in Mission Viejo, they decided I needed surgery right away, which is what I had done the day after turning 23 there at the hospital.

They did an Illeostomy, and removed about 20 inches of intestine and now I have "the bag" which hangs off my stomach. The first week out of the hospital and at home I felt like I was in shock and was traumatized due to my experiences. I was so scared just looking down at my stomach seeing all these staples and incisions, and having everything I ate or drank go into this bag that I had to empty which seemed like every hour at first. In about 2 months I am hoping to have it reversed so I don't have the bag anymore.

Where did this nightmare all begin?

I started feeling my stomach pains early this year, and for a while had noticed blood in my stool which after numerous doctors visits they thought it was just hemeroids. I have been on Enbrel since I was 19 because I have Ankylosing Spondylitis, which is pretty much Arthritis, which badly affects my back and the rest of my joints. So, early this year I was hospitalized for 6 days, got a colonoscopy a they told me it was so scarred up that they couldn't even get into my small intestine. They came to the conclusion that it was Crohn's, and since then I have been having intense flare ups every day.

I have been on the following medications:

Prednisone (high doses)
6MP
Enbrel 50mg
Encort EC
Pentasa (8 pills a day)
and a few different antibiotics that I can think of.

I just got out of the hospital again on Sunday, so even after my surgery and my large intestine being disconnected I am still having some pain. I just had another CT scan today, had to drink that contrast stuff again and also get the contrast through an IV. All I can say is that this has all been a nightmare. I was admitted to the hospital on my moms birthday and didn't even get to visit her at the cemetary. She died when I was 18 from Pulmonary Fibrosis and my father is battling Multiple Sclerosis. All I want to do is live a normal healthy life and get this under control, but it seems like there is no end. I want to get married and start a family one day. I want to live a good life. Right now I feel like I am living a nightmare, I feel like I am losing my mind from all the pain and suffering I have had to go through recently. I pray and I pray and I try to stay positive. There's a lot more to my story, but I feel I've written enough for anyone to ready write now. I have lots of questions and need lots of advice, I will post more shortly. If anyone out there takes the time to read this, thank you so much, it means everything to me.

If anyone can say a prayer for me, give me advice, anything, it would mean the world to me. I don't know what else to do. Thank you for your time. God bless you.

Chad

 

[dustydshook]

Chad, I will be saying prayers for you. Unfortunately this is a horrible and painful disease and takes a while to get flares under control but it sounds like you are well on your way to getting it streightened out. I am married and have children so a life is possible. Just hang in there and do everything the docs say to a T. and eventually you will get it worked out. Good Luck and welcome to our forum. There is a tremendous amount of support here use us it will be an invaluable tool.

 

[Chad K]

Thank you so much Dusty, god bless you and thank you for your support!!

 

[Astra]

Hi Chad
and welcome

you poor boy, my heart goes out to you!
I don't pray, but I'm here for you whenever you need advice, support, to vent , to scream or just a shoulder to cry on! big hug your way!
I can't help with Crohns surgery advice, but someone will come along soon with some.
Things should hopefully settle down, and I hope you get some relief soon
glad you found us, you're no longer alone, keep in touch, and hang on in there!
lotsa luv
Joan xxx

 

[Crohn's 35]

Hi Chad... welcome to the forum, and if anyone knows how you feel is it us, sooner or later we are thinking things we really shouldnt but when you are in pain and sick and no life, you have to pick yourself up somehow and get your Gi or change your Gi and them to listen to everything. So sorry your resection didnt work. I am surprised you are not on Flagyl, as it helps alot. You have to get rid of the infection first. I have a 22 year old daughter and she is healthy, but I would worry down the road as many people in our family have this disease.

We are here for you, please let us help you if we can. Get to a Gi that can help you. What about Remicade??? Sorry, hope this helps you. I am sending you strong thoughts and prayer. Hang in there! Please!

 

[Chad K]

JOAN,

Thank you so much for your reply and support. I will be asking lots of questions on here soon that I will need help with.

JETTA,

I haven't tried Remicade yet. I was actually thinking of trying Humira, since it is supposed to treat both Ankylosing Spondylitis as well as my Crohn's disease, but my GI doesn't want to prescribe it just yet because my father has multiple sclerosis, which he believes is a rare side effect of these meds, even though I am already on Enbrel. But if they are my last options, I am willing to try them. Thank you for your support, and I hope and pray this disease won't ever affect your daughter or anyone else for that matter.

 

[Pirate]

Hi Chad, just wanted to let you know that just because you have Crohns doesn't mean the end of the world, just a new way to live it.
I've had CD for 24 years being diagnosed at the age of 28. I had a wife and 3 small boys. I was in and out of the hospital so much that I swear all the nurses in the hospital knew me. I've never had surgery, but I've had pretty much everything else. All the tests, scans, rubber glove treatment and a center line. I've had to eat scrambled eggs treated with radiation just to see how fast things were moving and where there might be blockages.
I am now 52 years old with 10 grandkids, taking Remicade (and loving it), get to ride my Harley whenever I want and still with the love of my life for the last 32 yrs. You will find how to cope with this disease and when you do things will be better. Don't set any goals for recovery time, just work with your Drs and let remission come to you. Educate yourself on things that will improve how you feel and learn what to eat and what not to.

Good luck and welcome aboard.

PS: who's the pretty young lady in your profile. You look happy.

 

[dustydshook]

Thats funny pirate I was at an end of summer bash for all graduating classes from my high school. There was a lady there that graduated at least 10 yrs ahead of me and we kept looking at each other like I know you. Finally figured out she was my nurse from the hospital my last three stays!

 

[gypsigirl28]

Hi Chad,

Welcome, you are indeed not alone here, you will find lots of support and advice.
you have been through alot but like everyone else has said, HANG IN THERE!!! Things will calm down for you.

You are in my thoughts and prayers!!!!

 

[CDDad]

Hi Chad,
You have had such a tough time. I really hope this surgery helps you.
There are a bunch of us here who have an ostomy. Check out the stoma subforum under General IBD. There is great info there and helpful folks. Another great forum for ostomies is the uoaa forum.

 

[Guest]

hi Chad, & welcome to the family

i am so sorry to read of everything you have been through, and yet you're still suffering, and at such a young age too. you sound as if you have a strong spirit, and that is what will get you through.

although we are all sufferers of IBD (or carers of sufferers) the different ways this condition affects us all is incredible, and your story just goes to reinforce that point yet again.

it sounds as if you have really good medical care & attention, and i am sure your team of doctors will continue to do everything they can to get your quality of life back on track - i know it seems an endless uphill battle sometimes, but you will get there.

do you feel the ileostomy surgery has helped at all? if so, i'm wondering if maybe you should consider keeping it a little longer than the 2 months you mention.... many of us live with permanent stomas and have learnt to accept them as part of us - there is often a feeling of gratitude towards the stoma as in many cases it takes away a big part of the trauma and pain associated with IBD. of course, it is a very personal decision and i totally respect that, but if there are any psychological reasons for opting to reverse it quickly, then it might be an idea to look at this issue and maybe get some support and advice from experienced ostomists here.

i am glad you joined us - it often gives us hope to read of others who have been where we are, and overcome the worst times, gone on to live productive and settled lives... my own story might also give you some hope - i suffered from Crohn's symptoms from childhood, but didn't get diagnosed until i was around 20... at 23 i had my first surgery, and complications from that almost took my life - no exaggeration, my family were told to prepare for the worst. i kicked back, and in time went on to resume full time work, raise a family (for many years as a single mum), and have had some wonderful Crohn's-free years. even now that it has returned, i am still able to say i am living with a good quality of life, although i do have my bad days.

Crohn's can quite literally knock the joy of living out of us, but it can also retreat back into the shadows - and that is what you have to keep fighting for, getting it under control with all the medical & personal help you can find. don't ever lose hope - things can and will improve!

 

[Lucy]

Chad welcome. I've had crohn's 3 years now and no surgery yet. I actually have had a bad night tonight, but tomorrow will be better. I'm on Humira and it has helped a lot. Not everyday is good, but I do have more better days than I use to. Try to keep positive. I posted a vent before I read your story now I feel silly after reading what your going thru. Things will improve it just takes a little time with this disease. There are so many wonderful people here to help you. Keep coming back for support. I will keep you in my prayers.
Lucy

 

[mia]

Hi Chad. I know it feels like you're in the deep dark woods right now, but you will learn how to do this and be ok. There's the rough patches, and the not too bad patches, and the just fine patches - you're in a rough patch right now. You'll be able to slowly find out what works for you: which meds, what sort of diet, things you do to head off a big flare, or to get one under control. It's a learning curve, but it can be ok. Read a lot, find out as much as you can ( good resources here), ask the knowledgeable people here for advice, know you are supported here, and that everyone here understands. Hang in there.
Mia

 

[Dexky]

do you feel the ileostomy surgery has helped at all? if so, i'm wondering if maybe you should consider keeping it a little longer than the 2 months you mention.... many of us live with permanent stomas and have learnt to accept them as part of us - there is often a feeling of gratitude towards the stoma as in many cases it takes away a big part of the trauma and pain associated with IBD.

Chad, welcome!! Hang in there man, brighter days are ahead!! It does seem that many on here have found new life with their stomas!! Here is the link to the Stoma Subforum on here so you can get to know the others who have them as well....

http://www.crohnsforum.com/forumdisplay.php?f=46


Good luck!!!

 

[lseibert]

Welcome Chad, you sure have had a bad time. I know the shock of finding out about having this disease. I pray that you will soon find the thing that really works for you. As for myself, I found that some of the things I was eating, were bothering me, and stress is a big deal in managing my symptoms. Good luck finding what works for you. You have lots of support here.
:rosette2:

 

[Chad K]

GREG:
Thank you for your support! Wow, I've never had to eat scrambled eggs mixed with radiation for a test, no ones mentioned that to me yet. I have had to drink several of those contrast chalk drinks though. Those really suck. Thank you for wishing me luck and for your support. The wonderful lady in the picture is my girlfriend who has given me so much support through this difficult time, but I feel horrible that she has to deal with me as I go through this. Sometimes I feel like a burden.

ROSEMARY:
Thank you for your support and for the thoughts ands prayers! It makes me smile and gives me strength when I am told that I will get through this and that things will calm down.

JOE:
Thank you for your support and for letting me know about the Stoma subforum. I will be posting some questions in there shortly. I really hope and pray the surgery helps me as well.

DINGBAT:
Thank you for your support! You are right, this battle does seem endless, but I hope and pray that there is light at the end of the tunnel. I believe there is, it's just taking too long to get there! The ileostomy surgery has definitely helped me with the pain, but I am still in shock looking at this stoma that comes out of my stomach. It is hard for me to accept it still. I went to the grocery store the other day and felt so embarassed. I wore a large shirt to hide it but you could still tell I had it under my shirt. I was even scared that people would notice, and that someone at the store was going to question me to make sure I wasn't hiding something under my shirt, thinking I was stealing. I tried to stay behind the shopping cart as much as possible. So it has been hard to deal with having, and I really want it reversed.

I am really sorry that you have had to deal with this since you were a child. That must have been so difficult for you, and then your experience with your surgery, almost taking your life!?! I am so sorry to hear about that, and am very happy you were able to get through it and resume life and start a family. That makes me very happy and gives me lots of hope for myself. I appreciate your kind words, and for the strength you have given me.

LUCY:
Thank you for your support and prayers, and I am so sorry to hear that you had a bad night, I hope you are doing much much better today and continue to do so. God bless!

MIA:
Thank you for your kind words and support! I am glad the Humira is working well for you also. That might be my next step. I have to get this disease under control. Right now it is an out of control nightmare. I will keep fighting and will come here for support. Thank you!


MARK:
Thank you for sending me the link and for your support and wishing me luck! Thank you!

LINDA:
Thank you for your support and prayers Linda, it really means a lot to me! Stress definitely seems to worsen my Crohn's. I have been trying not to stress, but it's almost impossible with all that I am going through.


Thank you all for your advice, support and prayers!!!

 

[Pirate]

Chad, Your Welcome. Its not very often they do the scrambled egg thing, in fact I believe they are doing it differant now. Just wanted to touch base on the Barium contrast. Make sure you drink a LOT of water afterwards or you could end up with it setting up in your system and causing a painful blockage. I didn't and it did.
I thought she might be your gf but I didn't want to assume. Tell her that if she needs advice to jump on in cause there are an awful lot of family members here that can give her advice. Try to remember that she will be your #1 support person and try not to take out any anger or frustrations on her, you need her there every minute as you go through this part of your life. Its always best to have another person listening to the Drs with you cause everything can be overwhelming.
Good Luck and your GF looks to be a keeper. Cherish her and you will get the same in return.

 

[tmgread]

Chad, I'm so sorry you are having such a hard time right now. Remember that this disease flares, but it also calms, so there are good days ahead. My daughter is 22 and she has ankylosing spondylitis and crohn's also. I had prayed that the Crohn's would never be a problem because one doctor said that it is common to have "subclinical crohn's" with AS. Unfortunately, she is having some issues now that are making me worry that the Crohn's has decided to awaken. Have you noticed that your crohn's flares with the AS? I'm hoping to find a way to get both of her inflammatory diseases calmed. I know this is all scary and I'm glad you have reached out to the members here. I just got crohn's this year at my age and it's a lot to deal with, so I can't even imagine facing it as a young person. Have you checked out any of the Ankylosing Spondylitis support groups? They have a lot of good info as well.

 

[confused]

Chad,sorry for the things that has happened to you.Keep your head up.There is good people here to talk with.Best wishes.Jack

 

[Jennjenn]

Hi welcome
I feel bad that you experienced going through everything that you have. I know that dealing with crohns is a great struggle. I hope that you start to feel well soon.
I know that you mentioned that you have not started any biologic yet and that your father has MS. A specialist that I saw in NYC recommended that I should possibly start a medicine called Tysabri. It is used mainly for MS patients but she said that it works for Crohns patients also. I have not done a lot of reading on it yet because I have to wait for the last Remicade treatment I had to get out of my system. I am not saying that it is something to try definitely but it might be worth asking your specialist about.
I do hope things get easier for you, and feel well soon.

 

[GoJohnnyGo]

Hi Chad,

I've suffered from both Crohn's and Ankylosing Spondylitis for over 20 years.

Back then, I was 27 years of age. I had some pretty intensive intestinal surgery including a double resection. So I understand where you are coming from.

Really sorry to hear you're going through so much. Hope we can help you.

 

[acg101]

Hey Chad - Welcome to our forum - You will find that many of us been through some similar experiences you have had and are willing and ready to assist and be supportive.
Unfortunately this illness can take you at times to depths that test ones life endurance but we persevere and learn how to manage the situations and come out of it stronger. The good news is that there are new meds coming out all the time and its the most important to keep the faith and your spirits up, and this shall pass.

 

[peakey 1553]

Hi chad
reading your message brought a tear to my eyes, bless you I hope you get sorted soon.
I take methotrexate for arthritis but still get pain,sometimes i don't think doctors understand what you go through. I hav'nt had any surgery yet,but every time I have a colonoscopy they find something differant you just think it's a matter of time. I wish you well .lol peakey 1553
diagnosed 2007
crohn's
fistular
osteoarthritis
,meds,methotrexate, pentasa,omeprazole ,ibrufen

 

[DustyKat]

Hi Chad and :welcome:

I'm so glad you found your way here. As has already been said, IBD has it's up's and down's and there is light at the end of the tunnel. My daughter had emergency 4 years ago and was within 24hrs of being lost to us but has she has overcome her adversities and moved on. She has side effects from the surgery and has learnt to deal with it, I wish more than anything she didn't have Crohns but until someone pointed it out to me I didn't realise that in many ways Crohns has shaped who she has become and for that I am not sorry. I noticed you mentioned about feeling like a burden, perhaps if you read this link it may give you some solace.........................

http://www.crohnsforum.com/showthread.php?t=12000

This is a wonderful place for support and information so please stick around 'cause we would love to have you here. Welcome aboard!

Sending healing (((THOUGHTS))) and (((HUGS))) :hug::hug::hug:

Dusty.

 

[Chad K]

GREG:
Thank you for the info and advice. I will be sure to drink a lot of water next time I have to drink the contrast. Luckily it didn't cause a blockage for me last time I drank it. I definitely try not to take too much of my anger out on my girlfriend, but sometimes I have to vent to her a little, but I am careful about it because I don't want to stress her or out even though she has been extremely supportive and understanding. Like everyone else, she just wants to see me happy and healthy. She is definitely a keeper and I cherish her
Thank you Greg, god bless you for your support!

TINA:
I had heard that it is common to get Crohn's when you have AS. I've had symptoms of AS since I was about 18, and hadn't really noticed the Crohn's symptoms until I was about 20 I think. I never really had pain but a lot of times noticed blood in my stool. Then early this year, the extreme pain and hospitalizations began. I am sorry to hear about your daughter having both diseases as well. It is so tough to deal with, and saddens me that we have to suffer through it. I hope you and your daughter have calmed your symptoms. I see you are on a medication called Lialda, I've never tried that before. How well does that control your symptoms? I have seen a few AS support groups which have also been helpful. Thank you for your support!

JACK:
Thank you for your support! There are definitely great people here that have been very helpful.

JENNJENN:
Thank you for your support! I haven't been told anything about Tysabri, but I think this is what my father is taking to treat his MS, or something similar called Avonex. Why are you stopping the Remicade? I will talk to my GI doctor about it on my next visit. Thank you for the advice and support

GOJOHNNYGO:
Thank you for your support, and sorry to hear about your surgery, but I hoped it made things better for you and that you are doing well. Thank you!

DAN:
Thank you for your support! I can't wait for the better meds to come out, well, what I really can't wait for is a cure! I know this will pass. I will keep my faith and hopes up and stay strong. God bless!

peakey1553
Thank you for your support! I really hope to get this sorted soon also. I'm hoping one day (soon) I will look back at the suffering I have gone through and laugh, or at least smile. I never imagined I would ever have to go through this. Every day I kept wishing I would wake up and find that this was all just a nightmare. I hope you never have to have surgery and that you will only improve. I noticed on your meds that you take ibuprofen. I've been told by my GI not to take it because he said it could make the Crohn's worse, but I hope it hasn't made anything worse for you and is only helping. God bless!

DUSTY:
Thank you for your support and I am so glad I found my way here as well! I am sorry to hear about your daughter having Crohn's, but am glad that it has shaped her into a great person who I'm sure has gained a lot of strength through this. Thank you again for your support, and for sending the helpful link. God bless!

 

[Crohn's 35]

I've been told by my GI not to take it because he said it could make the Crohn's worse, but I hope it hasn't made anything worse for you and is only helping. God bless!

This is true, an American specialist was just talking those, Nsaids, smoking and stress are major triggers and irritants, so your Gi is correct.

Stress is hard to avoid, but rest is very important too. Vitamin D3 is crucial, learning on this forum, many people had very low Vitamin D levels just prior to dx.

Glad you are fitting here on the forum, hope you continue, and keep us posted how you are doing ok? We are here for ya!

 

[Shellybum]

Hi Chad
I've just joined this forum tonight,and just read your post. I'm sorry about what you have been through, and I'm sorry I can't offer you much advice as I'm only just starting to get my head around it too.
There is too much info for me to place on here about my problems etc to do with crohns but like you, it's great to find like minded people on sites like these who can offer us, support, knowledge, understanding and friendships.

If anytime you feel like a chat please feel free and I'm sorry I can't offer you anything more !!! I'm a newbie too.

Sending you lots of positive thoughts xx:sorry:

 

[xoxava]

chad,
so sorry to hear about everything you've been through. i am recently diagnosed in june 2010 and have been in the hospital several times. its certainly no fun. i am here if you ever need to chat with someone. i know how hard it is sometimes to relate to others and explain what youre going through. hang in there!

 

[reidyjo81]

Welcome Chad.

What a story, my heart really does go out to you, sounds like you have had an awful time with this diease. It really upsets me, when people have such a hard time like this. All I can say is I really really hope things get better for you. In the meantime keep asking questions and if you feel down and crappy then just shout.
jo x

 

[allimack]

Hi Chad. I'm so sorry to read about what you are going through - it is definitely one of the rough patches that go along with this disease. I've been diagnosed since 2008 and was going along pretty well until May of this year when things flared up with fury! I have a wonderful coworker who is incredibly supportive and recently gave me the book "Where is God?" by Dr. John Townsend and it seriously helped me to think about things from a different perspective and made sense of a lot of questions I had. I highly recommend it for anyone that is going through a struggle. Basically the book explains how God is always with us, even in our suffering. I will be sure to keep you in my prayers. Hang in there!
Take care,
Allison

 

[Markwayne]

Chad welcome to the forum. You will definitely be in my prayers. This is a terrible disease that comes with a lot of pain and very rough days. Ii know it gets very hard to stay positive but you will find that you are stronger than you think. There is a lot of support here and you are not alone inn this journey. Hang in there!

 

[margie]

Hi Chad and welcome to the forum. I am fairly new to the forum. The support the I have received here is incredible. I consider everyone here like a second family to me. I know that there is now a place that I can come and vent too that knows exactly what I am talking about and they all help me get through the difficult times.

I am here for you to, like others have said, vent and scream too or if you just need a shoulder to cry on.

Thoughts and prayers are with you. Keep you head high. I have learned to just live one day at a time. That is what keeps me going, right along with my writing.

Big Hugs,
Margie

 

[DougUte]

Chad, welcome to the forum. I will say a prayer for you. This is a awful disease. I had a resection last October and I have been through the ringer on this disease as well. Sometimes I just want to roll over and die. But life is worth living. I have full time employment and can support my family. I do feel the Lord is with me, he is aware of me and will provide a path where things can be taken care of. I hope you can find that kind of support. This forum is a great place to come, ask questions, vent, etc.. I am glad you found us.

 

[webbica]

HI Chad - I can only echo what the others before me have said. The support and warmth of feelings you will feel on the forum will help without doubt, and so will talking about your worries - as they say a problem aired is a problem shared Your story moved me to tears - bit embarrasing at work.
Keep strong and keep asking questions - Crohns is a disease that patients can become more informed and up to date than the 'specialist'.
Please take care of yourself keep talking and hang in there. Carol x