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Another Surgery & Tackling Crohn's Alone :(

Location
US
I have been reading so many of the stories on this forum and am thankful to those of you who have shared. I apologize for the long post, but I feel very alone and I’m hoping that sharing my story will be cathartic in some way or be helpful in some way to someone else who is dealing with Crohn’s.

I am in my early 30’s and have been considerably overweight most of my life, but otherwise I’ve always been generally healthy. My Crohn’s journey started about 18 months ago and it feels like it’s been a quite rapid downhill journey that has impacted every aspect of my life.

My diagnosis process was frustrating. Being relatively young, I sometimes feel like it is difficult to get “real” attention from a doctor. In mid-2010 I started having pretty strong stomach pains. I spent the fall of 2010 going to my family doctor where I learned that I was anemic a somewhat malnourished despite being ‘well-fed’, but was told that the stomach pain was probably just a case of irritable bowel and that there was really nothing I could do about it. As the months went by, the pain got worse and by the beginning of 2011 I was unable to keep down anything I ate aside from some crackers and chicken broth. Convinced that something bigger might be going on, I finally made an appointment with a gastroenterologist – a friend of the family who I was very grateful was willing to see me on short notice. On a personal level, by this time I had become a complete drag from a social perspective. I found it very difficult to motivate myself to go out and have fun and this was taking a toll on my relationship with my partner of 14 years.

Within a few weeks of going to the GI I was having all sorts of tests and was given the news – a classic case of Crohn’s with an area of stricture affecting the terminal ileum. While I was happy to have a diagnosis, the more I learned about Crohn’s, the more I longed for the mysterious yet innocuous irritable bowel diagnosis! Over the next several months, I was put on prednisone and flagyl. I tried Imuran and had horribly high fevers as a side effect. It’s probably worth mentioning that during this time I was in my first six months at a new, higher stress job.

After the failure with Imuran, we tried Humira. I was concerned about the drug’s side effects, but willing to try anything to avoid the possibility of surgery. By this point I was tired all the time. The pain in my stomach had become so bad that I sometimes couldn’t walk or speak. I traveled frequently for my work and often worried that I would find myself in an emergency room hundreds of miles from home. I did my best to hide the pain as I tried to be successful in my new professional role – sometimes taking heavy pain killers just to get through the day.

I only lasted about 8 weeks on the Humira. I felt like it was helping somewhat; however, I had a consistent low-grade fever and horrible night sweats. Around this time, my partner of 14 years left me unexpectedly. I was sick and heartbroken and this seemed to be the straw that broke the camel’s back. My pain kept getting worse until finally my GI strongly recommended that I proceed with resection surgery to remove the diseased portion of my small intestine.

In October of 2011 I had nearly 30cm (~12 inches) of small intestine and a portion of my right colon removed via a laparoscopic procedure. My surgeon, who specializes in Crohn’s procedures, said it was by far the worst inflammation he had ever seen. Because I had been on prednisone for nearly nine months, I was given a temporary ileostomy to allow the intestinal tissue to strengthen before completing the resection. My experience with the stoma has been difficult, emotionally and practically. I have been unable to travel or even do much physical activity at all. Between this limitation and my depression in dealing with the disintegration of my long term relationship, I have consistently gained weight since my surgery (against my surgeon’s recommendation that I lose ~80 lbs before undergoing another surgery to complete the resection – instead I’ve probably gained about 25 lbs). Given this difficulty, my surgeon decided that it would be better for my quality of life to complete the resection as soon as possible and I will be having my second surgery next week. While I am excited to move forward with the reversal, I am concerned that my weight will put me at greater risk during the procedure.

I feel like this disease has cost me so much in the past year. I have no family, nor a close support system and I find it very difficult to ask others for help or be a burden to those in my life. I always thought my partner would be there to support me in a situation like this, but now I find myself completely on my own for the first time in my life. While I try to remain hopeful, I am afraid that my life will never be ‘normal’ again. My understanding is that now that I’ve had the resection, I am much more likely to need this surgery again (if not several times) throughout my life. I worry that I will not be able to have the career that I want, that I will struggle to support myself and that I will be alone forever. I know that stress is bad for Crohn’s, but my life is nothing but stress right now.

I feel like this all has happened so fast. It has been overwhelming. I can’t predict the future, but for the first time in my life it is something that is scary instead of exciting. The fact that there is no “cure” for this disease makes me feel helpless and facing it alone is my greatest fear :yfrown:

Like I said, I am here tonight to share my experience and hope that I can connect with others who understand the impact this disease has on "normal" life.
 
Wow! You have definitely had a difficult time of it. I'm also in my early (er, now prolly mid) thirties and on the plump side. I was wondering if you're in remission now. I was separated from my husband last year when I was diagnosed and also felt like the world was crashing on me...and I had 3 kids to look after and support (we have since reconsiled).What really got me thru that time was my counselor...a wonderful, caring, good listener who was able to keep me focused on self care and making sure I had what I needed to get myself thru the psychological portion of this frustrating disease. My insurance covers the cost (maybe yours does too) and the hour a week invested has been well worth it. Living wiwith chronic disease is not something a person can do completely alone...finding this forum is hopefully a beginning for you to feel (physically and emotionally) better.
 
Location
US
Thanks UhMayZing - I am technically in remission, only because the resection removed the diseased portion of my bowel. My understanding is that after a resection, you are 'disease-free'; however, there is a higher risk that the Crohn's will come back at the point of the resection and, of course, it could always pop up elsewhere too. Aside from the difficulties I've had managing the ileostomy, I am feeling much better than I was before the resection. I am able to eat again (a great feeling, but unfortunately has resulted in gaining back some of the weight I lost in all the months I could barely eat!).

I did see a counselor for a bit after my separation. It was the first time I've ever done something like that and it was nice to talk with someone, but then with the surgery it made it difficult to get out of the house for a while. It is good advice though and probably something I should continue as soon as possible after my next surgery. I think my expectations were probably high too - I was looking for someone to give me the 'magical answers' for how I could feel happy again when in reality it is more about learning how to cope with the things that life hands us and especially learning to process stress in a way that doesn't settle in the gut.

Lots of respect for you in managing this and caring for 3 children!
Thanks so much for your response.
 

Angrybird

Moderator
Location
Hertfordshire
Hello, I just wanted to pop in and welcome you the forum :) I have 'seen' you on another couple of posts already which is great and I do hope you find this forum as wonderful and supportive as I have, one thing I can definetly say is that you are not alone anymore.

I hope that reversal op goes well for you and that this then means you can work on getting to where you want to be both physically and mentally. Please keep us updated on how you are getting on.
 
Hi OnMyOwn. Sounds like you have had a pretty traumatic time. So sorry to hear about it. You can do many things right now to help your prognosis, and the first is to forget about the prognosis of the doctors. They deal in statistics; you deal in one single human life. You may be the one person who never has a recurrence of disease, or never needs another surgery, or medicine may have an incredible breakthrough that will nail this disease in the next ten years.... trying to find that positive thought (and it is REALLY hard to do so) will help you heal, because as you say yourself, stress is not good for you and bad predictions are very stressful. None of us knows what the future holds, so may as well assume it will be great!
Your disease will become more manageable. Right now it may feel like you won't have a normal life (after my resection I asked my doc to give me a letter to get on disability, and he refused. he said, 'oh, just go get a new job! you will feel so much better'. It took me a while to get there, but in the end he was right. If I had gone on disability I would still be thinking of myself as a sick person, incapable of normal life.) Give yourself time to heal, and know that your life will surely get better than it is now.
You can do MUCH on your own to feel better. Research diet ideas. Now that you can eat again, make a conscious decision to eat well. find out about trigger foods. Learn about supplements. You may not be able to do really demanding exercises, but do yoga. If you can't go out, get on youtube and find a reliable beginners yoga class and do that. Even just the breathing exercises will greatly help with relieving stress, which in turn will improve your health and healing. Maybe look for a Crohn's support group that you could join to combat the loneliness and isolation. I know how very hard it is to climb out of the pit that this disease can throw you into. But each thing you do proactively will help you feel that you are in control of your life, not the disease. even just joining this site!

Wishing you a quick arrival at a brighter future!
 
Location
US
Thanks so much Jobell! I'm definitely learning that it is the small behaviors that are the most difficult to change, but also the most important. After my surgery I'm hoping to find it in myself to working on those little behaviors and start living life for myself - not for my ex or for this disease or for any of the other stresses that life brings!

I have had a lot of stress lately over whether I will be able to keep doing the same type of work or if I need to 'settle' for a less stressful career. I've even worried that I'll lose my job after all this time away - though lots of people I trust assure me that won't happen, it's just a fear I have because I've always been a very productive and responsible person. I work for a very large company - which is both a curse and a blessing. On one hand, my absence doesn't have a great impact. On the other hand, I have less of a support system at work than I imagined I would have at the smaller companies I've worked for.
 
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