1st day on forum-feeling overwhelmed today

This is my first day on any Crohn's forum. I am telling my story as a bit of therapy as I feel down today. I have no one in my immediate circle that has this disease and right now I feel very alone and that no one truly understands. I have had crohn's for 17 years. I had emergency surgery on my 14th birthday (they did not know what I was sick with and had become so ill they said I would die within days if they did not do exploratory surgery). As a result and removed 2 feet of my small bowel and my appendix and they almost removed both ovaries because the infection had severely damaged them - the diagnosis was Crohn's disease). For the most part since that time I have done really well. I am have become very knowledgeable about the disease, medications, diets and it has made the disease much easier to get a handle on it.

After my first surgery at 14, I was medication free until 3 years ago when I had a second bowel resection surgery for a stricture at the anastomosis. The surgery went well and the laparpscopic method was used. The recovery time was about 7 weeks and I was prescribed Entocort to keep the disease in check after my surgery. Sadly the feeling of wellness was short lived as 4 months after my surgery the disease had returned to the same area and was beginning to narrow once again.

I have suffered through many partial bowel obstruction episodes over the last 3 years and finally last month, Oct.21st/2009 I had another bowel resection but this time there was a complication and it had to be done as an 'open' surgery so I awoke to a belly full of staples and so much pain. I was disheartened by the fact that the recovery time was going to be significantly longer with more pain but I was grateful that the surgery was a success. I was happy to be home again. That joyful spirit soon crashed as two days after I was discharged from the hospital I awoke to my pajamas and my bedding being covered in blood and intestinal fluids. Being home alone I rushed to the phone and called 911 - scared out of my tree. When I arrived at the hospital the doctor immediately said that there was something very wrong and the surgeon came to see me and an hour and a half later I had surgery again. Thank the lord that my intestines had not come apart as originally feared but my muscles had come apart and created a large internal abscess. The muscles were repaired and the fluid drained. This time I awoke to a huge gapping hole in my abdomen. The doctor said that I had to heal from the inside out and it so currently I have a wound that is 6 X 6.5 X 6.5cm deep and the nurse comes to my home everyday to pack the wound. I am struggling to stay positive and it seems as though this will take forever to heal. I had planned to be back to work by Christmas now I will be lucky to go back for February. The specialist has said he may put me on Remicade but I am so worried about taking it. I can't get over this feeling of why me and what exactly am I suppose to be learning from this? Maybe patience? Its been over one month now since my surgery and life seems like groundhog day, the same day over and over. I have a fear that the longer this hole in my abdomen is there the more likelyhood that an infection will set in. Has anyone experienced this wound packing before? Also if anyone can suggest any new good Crohn's books that would be great.

Thank you to those of you who took the time to read what's on my heart and in my mind:)

Awww sorry to hear you have had a rough time, we all go through these emotions at times but hey hang in there it will get better and we are all here for you when you need us. Take it easy and don't try to rush things Bev x

im sorry to hear you are feeling down, reading your story really opened my eyes as to how devestating this disease can be and you really are an inspiration to many. ive only had one surgery so far and at 20 i struggle to cope with the feelings that go through my head, why me? will it get better, but we must find some spirit from somewhere from our own sanity. no you have been through a lot and i dont think that snything can beat you, think aqbout the positives of everything, you have had surgery for the better, you will go back to work and you have a nice home. keep your chin up i no things will get better for you, this disease is our test to make us stronger and we will beat it!!!! hope you feel better soon xxxx

Stay hear, post as often as you like... this is our extended CD family and friends.... you will get a lot of love... I admire your strength.

Hi Northern_sun,

Welcome to the forum :) You have obviously been through a lot. I am sorry that it has been so horrible. I have never had a wound like that and I am sure it would be very overwhelming. I wish you all the best with your recovery. Stay strong, you have come to a great place for support :)

Dear Northern_Sun, I have been in the same position as you.  I had 2 surgeries 3 months apart, and after the first one my belly was also left open to heal, we had to also use some not common medicine, as my infection was slow to respond to antibiotics.  We had to use some kind of vinegar, yes you read correctly vinegar.  It kills whatever kind of infections I was having.  My doctor and my father (who was a R.N. for many years then became a Foot specialist/surgeon) came up with this idea since I had multiple kinds of bacteria from the leaking intestine and abccess.  I was never told I would need "touch up" surgery in a few months, so I was very upset when I had to have the second surgery, and they never told me.  I will keep my fingers crossed and say a prayer for everyone of us.  Always come here when you are down, someone will always listen, understand, and give whatever support we can.  YOU ARE NOT ALONE, - mike