1st day on forum-feeling overwhelmed today

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New Member

Date Joined Nov 2009
Total Posts : 2
   Posted 11/25/2009 3:00 PM (GMT -6)   
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:)

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 11/25/2009 3:32 PM (GMT -6)   
My dad (almost 90 yrs old) doesn't have Crohn's, but he did recently have a deep infection in his leg - about six inches long and several inches deep. They cleaned it out and did the wound packing and it healed right up! Am hoping yours does likewise.
Since you have been through so much, perhaps Remicade is a good idea. Meanwhile, hang in there!
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. SCD multivitamin, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 11/25/2009 3:58 PM (GMT -6)   
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 smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/25/2009 4:03 PM (GMT -6)   
I hope you feel better soon Northern-Sun.  I know we all feel down and depressed at times.  If you ever need to vent, come on here...that is why we are here. 
I just recently went on Remicade and it has done wonders.  I hope it will do the same for you.  Feel better.  You will heal it  just takes time. 
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Xx Claire xX
Regular Member

Date Joined Mar 2005
Total Posts : 94
   Posted 11/25/2009 4:26 PM (GMT -6)   
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
Claire, 20
Diagnosed with Crohns march 2005
started on Liquid feed for 2 months +12 a day prednisolone,
Aziothioprine 100mg
pentasa 1500mg
calcium and vitamin D
Small bowel resection october 2006
Osteoporosis diagnosed 2006
relapse of the small bowel november 2009 :(
Life is what you make it!!!

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 11/25/2009 4:52 PM (GMT -6)   
Welcome to HW......so sorry for all you hv gone thru and continue to go thru.....you will find the members here very helpful compassionate caring n knowledgeable...you sure are an example of survival ....i hope u stay with us and share learn in this really great family we hv here...take care ...lyn

...would like to just add that there hv been days where i sat here typing crying my heart out and the friends n support truly did help me thru it ...you are no longer alone

..                          Co Moderator for Crohns , Anxiety/Panic ,Alzheimers....
           Crohns,Pyoderma Gangrenosum ,Seizures ,Fibro ,completely Deaf ,Anxiety/Panic,Neuropathy..
......I COULD feel sorry for self but where would that get me....I CHOOSE  to fight n survive...
.                                    Donate  www.healingwell,com 

Post Edited (Howlyncat) : 11/25/2009 2:58:20 PM (GMT-7)

Regular Member

Date Joined Sep 2009
Total Posts : 54
   Posted 11/25/2009 5:07 PM (GMT -6)   
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.
Mom of a 12 year old girl diagnosed on Oct. 2007.
Prednisone (tapering off)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: Primal Defense Kids/ Omega 3: Coromega/

did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day)

Slowly incorporating solids. (500 cal solid food + the rest in formula)

Warm healing wishes from the Miami beaches....

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 11/25/2009 7:21 PM (GMT -6)   
I don't think you were chosen for this, or were expected to learn something from it, I think it's just atrocious, random luck. Illness may offer lessons, but give me health any day. Any treats you can give yourself on a day-to-day basis? Light reading? Crossword puzzles? Audio books (free downloads available from any public libraries)? A little challenge like learning a new language? Some poetry? (There's a great selection of quite short poems, often funny or touching, in this book: Poetry in Motion: 100 Poems from the Subways and Buses. I always like pulling it off my bookshelf.) Are you able to do any gentle crafts, knitting or crocheting, perhaps? Is there anything work-related you could study, even just a few minutes a day, that would help you when you return to your job? Just some random ideas. I wish you rapid healing and a speedy return to health.

Regular Member

Date Joined Feb 2004
Total Posts : 53
   Posted 11/26/2009 12:36 AM (GMT -6)   
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 :)
Female, mid-20's, lives in Australia
Symptoms since 99', Dx 2003, Right Hemicolectomy 2004, Trying to find the magic combination to manage this silly disease :)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/26/2009 11:01 AM (GMT -6)   
Welcome Northern-Sun to the Healingwell forum. As you have already seen, we have some wonderful and supportive folks trying to live with this darn disease too. I feel your pain on having an infection in your incision and having it left open. I got an infection in my incision both times after my resections and had a nurse, my sister or my husband doing the packing changes. It may seem like it will be forever before its closed, but mine closed both times in about 8 weeks. I even went back to work with a tiny little hole still open but that closed in no time. Hang in there better days are ahead. Stay with us, we do understand and we do care.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Mar 2005
Total Posts : 33
   Posted 11/26/2009 12:02 PM (GMT -6)   

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

Veteran Member

Date Joined Jan 2007
Total Posts : 656
   Posted 11/26/2009 1:37 PM (GMT -6)   
What tough things to have to face as you're just starting out! Your story makes me thankful that I wasn't diagnosed--and didn't have my open abdominal surgery--until I was much older than you are. The only lesson to be learned from your experiences is that you have a store of courage, humor, and indomitable spirit somewhere inside you, stronger and deeper than you ever would have guessed. Day by day, inch by inch, you'll climb out of this hole. And you'll survive and thrive.

As other posters have said, you're not alone. You'll be in my thoughts all day today. I wish you all good things--including quick healing.
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