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Hello, New here :)

Hi everyone,

My name is Al, I am 42 and I just found your forum. I am here because, like most of you, I have Crohn's and it's hell sometimes. Here's my story:

After two hospitalizations, I was diagnosed with Crohn's Disease when I was 37, five years ago. The hospitalizations, for Crohn's and subsequently C-Diff, were about eight. Every hospitalization took a week from work, most of my sick and vacation time, and my savings from out-of-pocket expenses which I have to pay alongside my insurance, plus my prescriptions. I work for the federal government and I have pretty good insurance I'm very grateful for that. I was Pentasa...eight pills a day...ugh.

I was getting used to annual rush to the hospital with a bucket between my legs vomiting all the way there.

I was even writing papers for grad school in the hospital.

Anyway, after my last flare-up I thought I was dong great and was in remission for a couple of years. I was only in the hospital once in 2013, and that was for C-Diff. Life was good. Then on this past Labor Day...BAM!

I was again driven back to the ER sick and in severe pain. The doctors did another CAT, and an MRI and know my ileum was inflammed again but they wanted to put me on steroids again and try to open it up. This time it wasnt budging. I had to go in for surgery.

The surgeon removed about 25 cm of my large and small intestine. I was in the hospital for about three weeks :yfrown:. During that time, I wasnt passing stool because of all the pain meds. They had to put a tube up my nose and pump my stomach to stop the vomiting and made me walk every day. I'm a pretty tough guy but all I did was cry from the pain, the fear, the unknown.

I lost 20 lbs in the hospital and a month off work.

When I came home I was on an injection for blood thinner and a probiotic for a month.

My mentality and emotions got better, and I went back to work and life has been good, but post-surgery I still have some pain but I think its the healing. It hurts as it passes through. Ill be meeting with my surgeon on Tuesday.

Today I had an appointment with my GI. He told me because of my many times in the hospital he wants a colonoscopy ASAP.

He said I run the risk of a relapse in spite of the surgery based on my history, and wants to see what's going on in my colon and see if there is any inflammation. If there is, I go on Humira. If not, Im not sure.

This is my biggest fear, guys: I am terrified that I will have more surgeries and lose all my digestive tract: the intestines, the colon, the rectum....and have a ileostomy bag connected to me for life. Am I jumping very far ahead here?

My surgeon is very confident, and said that most of his patients do really great after the surgery. Still, Im scared to eat salads, nuts, drink caffiene or alcohol...

Im athletic, and run, swim, and lift weights I generally avoid junk food. Im on light duty from the surgery. I used to think that a relapse would not happen to me because I tried to be so careful. yet here I am, with a portion of my intestines gone because of a stricture.

I think what I need most of all are some people just to talk to. People without this disease don't understand the embarrassment, or the desire to get a hotel room when visiting relatives when visiting family for a private bathroom, or having to avoid dinner at times. Also, the emotional toll that this disease takes.

Maybe Ill be ok for awhile since I had the surgery. I don't know at this point so I try to live a day at a time. The real comfort I have is that I am not alone.

I will be catching up on posts, and learning a lot while Im here, and asking a lot of questions. Thank you all for reading this. Together we all make it. :thumleft:

-Al
 
Hi mercury.
I hope surgery brings you relief and a long remission. I also had a resection and although I'm still on Meds, I'm much better than before. I drastically changed my diet and that made a huge difference for me as well.
The psychological toll this disease can take is very real. You aren't alone. Hopefully things will stabilize soon and you'll feel life is more "normal".
Wishing you well. Keep us posted on your progress.
 

DJW

Forum Monitor
Hi and welcome.

This disease can be tough. I've had it for a long time. When in a flare our minds can take us to a lot of dark "what if" places. Discuss your concerns with the doctor.

I've been active in sports all my life. I encourage it. Personally I enjoy cycling, golf, ice hockey to name a few.
It's also important to keep in mind the Internet is full of horror stories.

I've spoken to a councilor in the past. You may find it helpful.

Sending you my support.
 
Thanks! Im about seven weeks after surgery and have a slight pain in the ileum area and it's freaking me out. Since I go to the surgeon on Tuesday Ill just wait. Im still eating and everything is making its way through and I have no nausea but its more fear at this point. Boy do i hate this disease!
 

dave13

Forum Monitor
Location
Maine
Thanks! Im about seven weeks after surgery and have a slight pain in the ileum area and it's freaking me out. Since I go to the surgeon on Tuesday Ill just wait. Im still eating and everything is making its way through and I have no nausea but its more fear at this point. Boy do i hate this disease!
Hi Mercury1-Welcome! How did it go with the surgeon? Did you guys devise a plan?
 
Hi Dave, It went better than expected actually. He cleared me for exercise, and explained to me that I may go on humira asa preventative measure based on my colonoscopy. He cleared me for exercise again as well. He told me not to worry, I have a basic case of crohs and not the type that requires the removal of the rectum and anus and colon and everything else. If I take care of myself and take my meds I may get flareups but apparently I wont need surgery again for a long time. I hope! If ever!

He mentioned humira does mess with the immune system but people tend to do well on it. Good stuff!

-Al
 

dave13

Forum Monitor
Location
Maine
Mercury1-Glad it went well.Nice that you are cleared for activity.It is good for our emotional state of well being as much as for body fitness.
 
Hi Al,

I am glad to hear that the appointment went well and that you are recovering ! that is some great news.
It also sounds like you are in good hands with a pro active team of doctors who builds up a strong game plan for you in order to avoid another surgery. It is becoming somewhat a standard to start biologics after surgery; I have seen some statistics which show that it reduces the need for a 2nd surgery significantly.
I know how a stricture can ruin your quality of life... I hope now that you're ileum had a "reboot" you are going to feel much better for many long years.

You really put into 2-3 sentences the whole dealing thing; really most if not all people who understand are those who deal with it at well. I am not even sure that I would understand if I were on the other side (although I would like to believe I am sensitive enough that I would have).
It's great that you are not alone, that's a big bonus that life can bring. For understaning, this forum is the place, really.

Feel well and keep us posted.
 
Thanks! Well I had the dreaded colonoscopy yesterday. After only three months the inflammation is returning. I start Humira this week. Three parts of my colon are showing the signs of the disease returning, as I expected. Next step is the Humira to see if it will reverse or halt the spread and irritation.
 
Hi Al,
Sending positive thoughts, hope the Humira does the trick for you and that you are back up and operating at full speed soon. Good luck. Catching it early is the key here.
 
Thanks for sharing your story! Was diagnosed at 40 (six years ago) but probably had crohn's for about 10 years prior. Too embarassed/depressed to take it seriously, perhaps. I did see doctors, but they prescribed antianxiety medication for 'nervous stomach'. Had this been diagnosed earlier, I may not have had the experiences I've had. Four abscesses/fistulas in four years. I start remicade within the next two weeks and I'm really looking forward to it.
It's tough dealing with an 'invisible disease'. Most people don't really understand it, and can't understand why we NEED to know where the bathrooms are located (and why we tend to freak out if they are too far away, or smack dab in the middle of all the action). Knowing your body and how you react to things makes it easier to deal with. Knowing what to avoid really helps, too! No red meat, soda, alcohol, greasy/fried foods, etc. I can eat salads as they actually help move things along.
Best of luck to you and please do keep posting here!
 
Thanks Linda, I just started Humira. I think it's going well but eating big meals and I don't agree. I still feel sick a lot but now like I did. I am hoping this will be the only surgery. My colonoscopy showed some inflammation after the surgery and my GI immediately put me on Humira (BY the way, if the medicine is too expensive gor you the company will help with the cost) so life is pretty good :)

-Al
 
I totally understand the desire to stay in a hotel rather than a relatives to have access to a bathroom. I've dealt with it many times. I'm a mother of three. My fiance and i recently bought a house, and a selling point for me was the second bath. people with the disease do not understand the urgency of needing a bathroom. They don't understand the embarasment of almost having an accident, or the anxiety the most routine things that everyone else can do. Needing to know every location of a bathroom for errands around town. Trying to explain to people close to you the reason you're so tired, or why you're in so much pain, or why you rarely eat. It gets very discouraging. It also very lonely at times.
 
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