Community Forum

Hi all, I am new to the forum and was recently diagnosed with crohns,although I had a initial diagnoses of UC in 2009 I did not have any more flares and took very little maintenance meds(pentasa 500mg 3x daily) for 3 yrs. In June of this year I had a really bad flare that put me in the hospital for 21 days and I nearly died from malnutrition and blood loss(I also have type 1 Diabetes).I started Remicade infusions in the hospital and high doses of prednisone that I had started tapering off of upon discharge. Unfortunately I started flaring again.So now I have had my 4th Remicade infusion and I am still taking Prednisone 30 mg.(that I hate!) I am starting to taper that as well.Through all of this I have had some relief but not much(lots of pain and bleeding with most BM) on my last sigmoidoscopy that I had, my GI found a stricture and has referred me to a surgeon and now believes I have Crohns, because of the stricture he found in my transverse colon.I am terrified of surgery and what that might entail.any thoughts or guidance would be very appreciated.I have so many questions and feel overwhelmed!

 Reply posted for kimree.

I'm scheduled for surgery in November, 2013.  Entire transverse colon strictured.  I have active disease in other areas of my colon and am pending a sub-total colectomy.  I'm 65 and terrified of what this will do to my quality of life.  I was only diagnosed 3 years ago, but those 3 years have been very difficult with bowel obstructions, transfusions, etc.  I would be happy to hear some pre- and post-op stories that give be encouragement.  Thanks.

 Reply posted for kimree.

Aftercare is to remain on remicade for remission.I am on NO other meds at this time.My last infusion was 11-1-2012.I am a little nervous though because I get infused every 8 weeks & I am over due at this point.My insurance changed 1-2013 & my GI Doc is making sure my new plan will cover the infusions.I saw him on 1-14-2013,they are waiting to hear from my insurance Co.My nerves are a little on edge about this.I know I should not worry,or stress myself about this,but remicade saved my life,and has seemed to work for me thus far.The way insurance companies & our healthcare system are these days I get afraid.I hear horror stories all the time,as I am sure we all have.My recent health care team are wonderful people who do care,but sometimes it seems like it can be about following the dollar.I often question is it the Docs,insurance companies,or the pharmaceutical companies that roll the dice for us?Well,with all of that said I wish everyone well who maybe facing surgery,or dealing with IBDs.Just keep thinking positive,& putting one foot in front of the other & all will be ok!

 Reply posted for rmchugh29.

Hi all, this post is for all of you who replied to my pre-surgery post.Thanks for the support & info with your personal experiences,& for those who maybe dealing with the fear of surgery yourselves.I had my surgery on 12-13-12.I had a subtotal colectomy.Anastomosis(resection)between the ileum&the proximal descending colon.I am left with about 10 or 12 inches my colon.The surgeon not only removed the stricture,but all of  the diseased portion of my colon.My hospital stay was 7 days.The GI team was awesome!I have been released from the surgeon now & back to my regular GI Doc.The surgery itself went well.No complications,no bag at all,just the process of recovering from the surgery & trying to gain some weight back.I will be returning to work 2-11-13.Been out of work since 5-28-2012.I have no symptoms of crohns at this time,thank God.My results from my surgery have been amazing.As of about 2 weeks ago my BM patterns are about 2 to 4 times a day.The doctors are amazed and so am I.I am eating whatever I want for the most part.Just trying foods to see what does or does not send me to the toilet quickly,or often.So far my over all satisfaction from my results are at a high.It has been a process getting my energy levels back up,but that will come in time with the healing process.

 Reply posted for kimree.

I have had crohns for 12 years and just recently admitted to the hospital for emergency surgery due to
an abscess in my transverse colon lying against my stomach. I am an or tech so I knew the procedure and outcomes. 
i had an excellent surgeon, unfortunately I had to have a temporary colostomy bag and am currently waiting 
for my reversal surgery. it is definitely scary going into any surgery, just stay positive these are obstacles in our path
but in the end will only help us.  Good luck everyone!

my son is 12 and was diagnosed with crohns 5 years ago.  It has been really tough.  He was taking pentasa, entocort, and 6-mp for a few years, then we switched to Remicade.  It has worked for the most part, but lately he has symtoms back before we hit the 8 weeks, and problems troughout the 8 wks with constipation and dehydration.  We just had an MRI a few weeks ago that confirmed that he will need surgery.  We meet with the surgeon on Tuesday to discuss the proceedure.  We are all scared and nervous about this, as he is only 12.  I really hope this helps with his symtoms   We've also decided to really work on his diet, removing sugar and dairy, and adding in some really good probiotics (he's on cuterelle now) but I found a great one called "primal defense", also will be adding in digestive enzymes and increased his fish oil from 500mg to 1000mg per day (switched to a purified one, no mercury).  I'm hoping that after the surgery we can work on building up his immune system thru diet and suppliments.  I think he will need to continue with Remicade as he has disease in other parts of his intestines that is responding well to it. 

 Reply posted for kimree.

I guess that is what my surgeon was talking about that might or possible could happen to me. So this j-pouch would go right where they did my surgery the 1st time .  The place where they did the re-bowel section which is the small intest to the the lg colon??

Sorry if I sound dumb I'm just trying to figure this out.

 Reply posted for kimree.

I had UC for 15 years before my first surgery, eventually a successful j-pouch.  Being scared is ok, you are likely tougher than you think.  They have good blood tests and biopsies now to confirm Chrohns or UC, has this been done, and or a second opinion?

 Reply posted for kimree.

I had surgery 16 years ago.  Ihad them remove my colon and form the dreaded j-pouch.  I couldn't live with the prednosone!  That drug destroyed my entire bone structure.  I was on it for 4 years and developed every side-effect imaginable...I had to visit a rheumatologist who tested my spine and hips of an 83 year old man.  I was 46 at the time!  Every time I tried to go off the steroids, I would have a violent relapse.  The only solution for me was the j- pouch.  I have lived 16 years with it.  I didn't have a great time with it, but I have managed to travel and enjoy life with out pain.  Every time I went to my docs they would ask about pain...I never knew the extent of my pain until they removed my diseased colon.  There are days I regretted the decision, but I have to say I am happy I did it...and was I scared!!!u

Hi there,

I am new to this forum too.  I am facing a surgery to have the colon removed and hopefully a j-pouch later.  I am scared too.  I am told my quality of life will be better and I will wish I had done this long ago.I have been fighting it for 11 years now.  I am counting on them being right.  I am on 4 meds right now that lower the immune system so infection of any kind is a risk.  I am ready to reclaim my life back!  Good luck to you. 

Murfy

 Reply posted for kimree.

Hello,

My name is Connor. I am 17 and was 16 when i found out i had Crohns I was in your situation. I basically lived in the hospital for 6 months.The doctors finally did a bowel resection over the summer. I was anxious to go into surgery, but i knew that steroids and other pills were not keeping my symptoms at bay and not keeping me out of the hospital. I knew something different had to be done if i ever wanted this seemingly endless cycle to end. SInce my surgery in June, i have been symptom free. I am off all steroids except for Remicade, which i get every 8 weeks. I have even been able to enjoy foods again that i had missed out on. Surgery is scary, but just realize that if done right which is almost a 100% chance in this day and age, your life can improve. I feel like these surgeons and the surgery have given me my life back. I am now able to enjoy the little things in life that every teen does. I hope your surgery goes well, just know things can and will get better

Connor