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My story... and surgery this month

my story... and surgery this month

Hi to everyone on the site. I'm glad that I finally signed up; it seemed every time I googled the name of any food along with "crohn's" this site came up first nearly every time... I guess I'm a bit lazy.

Anyways, I was officially diagnosed with Crohn's during my junior year of high school, 2004. I have had stomach problems my whole life, and have been on various drugs for my crohn's (pentasa, methotrexate, steroids, remicade, and others I've forgotten). My university years were significantly interrupted by frequent flares, but I managed to graduate on time and even study abroad.

I have taking humira as my only drug for about two years, at the minimum dosage (40 mg/bi-weekly). I was rushed to the hospital for the third time in my life about six weeks ago with another intestinal blockage. As usual the pain was excruciating, and I have never really been able to describe it to anyone other than those with the disease. This flare was different because the pain did not go away completely after leaving the hospital; it was still there, albeit not as intense. I was very worried.

I met with my GI and surgeon a month after being released and was still having pain and nausea (though not nearly as intense compared to when I went to the ER). They both recommended laparoscopically assisted ileocolectomy and I've agreed. There is significant, apparently irreversible scarring in my terminal ileum and also suspected damage to my jejunum area a bit higher up in the small intestine (hopefully the surgery will only stick to the ileum). I have been lucky to be living in Boston, where I receive care at the Crohn's and Colitis Center, a leading place for crohn's research and new therapies.

Over the past two weeks I've had some days filled with mild to moderate pain and nausea, but others are nearly pain free and I begin to question my option to schedule surgery. I do think, however, that the operation is inevitable, but these conflicting states of feeling pain and then feeling nearly pain free can make things seem a bit confusing. I am hopeful for a complete, healthy recovery and most of all can't wait to be back on the tennis court!

Anyways, I am so glad to be here and hear everyone else's stories. Best of luck to all of you, stay strong!

Bobby
 

Astra

Moderator
Hiya Bobby
and welcome

I agree, the blockage pain is the most awful experience I've ever had! I was so lucky, Pred and Metronidazole (flagyl) saved my life and I avoided the surgeon's knife!
My gastro talked about surgery in the future too, but I am hesitant cos I haven't exhausted all my options yet, ie the biologics.
It's a toughie. I've told my gastro to only open me up if I'm knocking on Death's door again.
if it's any consolation, I made a full recovery. I hope you get some peace of mind.
lotsa luv
Joan xxx
 

Crohn's 35

Inactive Account
Hey Bobby :welcome: I for one have had many full blockages and they are the only thing I fear...there is no greater pain. I know you dont want surgery but with scar tissue whether from past surgeries or bad flares it cannot be fix with meds in my opinion, having Laproscopic surgery is the way to go and you will be back on your feet in about 6 weeks or less, depends on your fits and your willing ness to heal. In the meantime I would drink Ensure, Isopure to get your nutrition and not feel so nauseated. Avoid chewy foods.

When is your surgery booked? :hang:
 
Hi Bobby and welcome to the forum..:)
I hope your surgery goes will for you and that you make a brilliant recovery.
Take care..
 
Hi Bobby,

I saw your post about being in MA and ended up on your story. It sounds like you have had some real ups and downs with things (especially now with your surgery!!) I have to say that i am completely amazed at your ability to go to college and even study abroad. I am a student (this is my second year-i was only diagnosed with crohns at the end of my first year) in MA also-pretty close to Boston actually-and i hate to admit defeat but it is SO HARD to keep up with the college lifestyle, academics and social, and still do well. I would love to hear more about how you dealt with finals and studying etc..

I also have been stressing a lot about feeling lonely in a sense that it seems like hardly anyone else on my campus or any of the multiple campus' nearby have IBD! Any thoughts on how to find people/connect? Or any recommendations on MA support groups? I feel like I am wayy too old for the teen groups, and maybe too young for the adult ones?
 

Jessi

Moderator
Hey Bobby! Welcome to the family. Wow, you've been through a lot! Now that you've finally joined us, you'll find loads of support and good friends who can really relate.

Check out this sub forum that focuses on Surgery. You may find it helpful. Please keep us all posted on your surgery date and how it goes down. :hug:

http://www.crohnsforum.com/forumdisplay.php?f=71
 
Hey everyone..i just really have a question..but b4 i get to that i guess i'll tell ya that i was diagnosed with crohns disease when i was 16yrs old in 2006...the summer b4 my senior yr, i was an athlete, etc... when i was diagnosed i lost 35lbs in like 2weeks, but my parents and i didn't understand what was wrong cause nobody in my family nore down the line has the disease. I didn't even get a chance to finish college due to my flare ups and the pain. Anyways i just really NEED TO KNOW HOW TO BE PAIN FREE, i've been looking up what foods to eat n what not to eat but every doc has a diff diet...even my own doc told me diff things, i take medication everyday and was on remicade..and the steroids...and the other stuff u have to take... i just really need help with this question...hope somebody out there has an answer. Thank u for ur time and convience. Sincerely, Chris
 

Angrybird

Moderator
Hi Bobby and welcome to the forum :bigwave: I agree with Pen, although you are having better days there is stil scarring and narrowing so it could be you just ate something that went through it better. I have always understood it that nothing will get rid of this type of narrowing apart from having it chopped out or having strictureplasty (sp?) which is still having an op. It is is a bit scary but could end up giving you years of hassle free crohns (I am having an optimistic day :)). Definetly worth having a look at the surgery sub forum to get some more info. Personally for me the op was a lot easier than I thought it was going to be. Have you met anyone yet from the surgery team? Have you been given an op date?

Chris, :welcome: to you also! When you can perhaps start a new thread so more people have a chance to look at it and help you. You say 'was' on Remicade are you still on it now? What other meds are you on? Is the pain in a specific area of your tummy?
 
I know i'm sorry bout that...and sorry to the person who started this thread...i'm new and didn't know how to use this, and yes i was on remicade but when i lost my job due to a flare up i lost all medical benefits.. i'm taking Entocort 3mg 3times a day, the pain is def in the abdomen area and nothing seems to be working... not even the prednizone.. the steroid for inflamation i guess, if u could, could u tell me how to start a thread so i'm not intruding on anyones convos lol, thank u for replying
 

Angrybird

Moderator
No worries :) If you go to the 'My Story' page where you found this thread there is a little blue tab on the left hand side towards the top of the screen that says New Thread, click in this and you can then put in a title and a nice long (or short if you want) post on what is happening with you at the mo. You got fired due to being ill with your chronic illness, not sure if you boss was legally allowed to do that.........
 
thank u i will do that haha.. but no i got let go due to days i missed in a row.. i had to miss alot of days cause of pain and blood in the stool, etc.... so the factory was just doing their job... theres no way u can miss 3weeks n still have a job. plus i couldnt tell them i had crohns cause who wants to hire somebody when they go to the bathroom constently..especially a top dawg factory.
 

maria

I love you God.
haha my pain felt like contractions like in childbirth.. Also when I relaxed my sphinctor muscles(beared down) I got a little relief. It would come and go just like contractions and felt the same to me.
 
Recently Diagnosed...Blockage question..

I'm reading all kinds of very scary stuff on here and it's freaking me out a little bit! Since I was just diagnosed on the 11th of January of this year, I'm wondering how a blockage occurrs? Especially if diarrhea is so prevelant and our stools are soo soft. Someone educate me! Also, can someone prevent a blockage from happening through diet or something??
 
Hey everyone..i just really have a question..but b4 i get to that i guess i'll tell ya that i was diagnosed with crohns disease when i was 16yrs old in 2006...the summer b4 my senior yr, i was an athlete, etc... when i was diagnosed i lost 35lbs in like 2weeks, but my parents and i didn't understand what was wrong cause nobody in my family nore down the line has the disease. I didn't even get a chance to finish college due to my flare ups and the pain. Anyways i just really NEED TO KNOW HOW TO BE PAIN FREE, i've been looking up what foods to eat n what not to eat but every doc has a diff diet...even my own doc told me diff things, i take medication everyday and was on remicade..and the steroids...and the other stuff u have to take... i just really need help with this question...hope somebody out there has an answer. Thank u for ur time and convience. Sincerely, Chris
Hey Slim....I've been recently diagnosed and have found a book called "Restoring your Digestive Health" by Jordin Rubin and (forgot-his-first-name Dr. Brasco)! Anyway, you should pick it up and read it cover to cover. There is a specific and very strict diet in there and a very specific way you can get your gut under control and feeling good again. But as the author describes it, this process is similar to an athlete training for the olympics. you must be dedicated, focused and really WANT to get better. If you have all those things, then this book's recipe's and food suggestions will work for you most likely. It's worth a shot regardless! Good luck and post a reply if you end up getting the book and following it! :)
 
Hello Robert...

I love the care in Boston, my hometown!

I would do what you are doing..waiting to see if it will pass..although, elective surgery is ALOT better than emergency surgery:>)

best wishes..
 

Suvii

An old fart from North!
:bigwave: Bobby! Welcome!

I've had blockage pains too and they really are something else... I have three obstructions in my ileum and will be in surgery February 23rd. It will be laparoscopically assisted ileocecal resection, my first surgery. I'm really nervous though I'm sure it will help me and I'm gonna be okay.

Let us know when you're going in! Best of luck with the operation!

:hug:
 
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