FINALLY back with surgery update!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Dec 2005
Total Posts : 83
   Posted 6/2/2012 3:42 AM (GMT -7)   
Hi all, it's been a while! Well I'm finally back to update on my surgery which I had last October! I would have posted before this, but I had been feeling so down about the surgery that my update probably would have been very negative (I did actually come back to post an update quite a while ago, but there was a VERY anti surgery thread going on which made me feel even more miserable, lol).
Anyway, surgery was pretty rough. I don't know what happened the first night, I was vaguely aware of a fuss around me, but I woke up the next morning in high dependency. Was connected up to a monitor and oxygen and had blood transfusions. Didn't feel too bad that day, but then things started to go downhill. Began to feel really unwell and the pain wasn't good. My body swelled up massively, I was enormous! The surgeon said it was because my albumin levels had dropped and that they had never seen anybody's levels drop so dramatically after surgery. He said they knew my UC was bad, but even they hadn't appreciated how bad it was and that my colon had been a mess. Because of that, my kidneys then didn't want to work properly. Anyway things were getting worse, and I needed TPN - they couldn't get a pic line in so I had a central line. Had a CT scan and I had a fluid collection so a drain was
inserted. Then for the second time, I had to have the dreaded NG tube inserted. I felt like I had tubes and leads everywhere.
Anyway, things finally improved and two weeks later I was moved to a normal bed. I was feeling a lot better and then the morning of the day I was supposed to go home I had really bad pain. Another CT scan showed a much larger fluid collection, so had to go back to surgery for a pelvic washout. Spent a total of four weeks in hospital before going home with a drain, which I had in for another month. Had a couple of hospital admissions after that for dehydration.
I am so grateful to my surgeon. If it hadn't been for his intervention, I would have been forced to have surgery back in May when I was hospitalised as the Gastroenterologist said my colon had to come out that weekend. I definitely wasn't ready for it then and would have been very bitter if I'd been made to have surgery without having had the chance to try LDN. He overrode the GI team and for that I cannot thank him enough!
Well it's been eight months since my surgery, and I now feel fantastic! It's taken a long time, for the first seven months I felt awful, but the last month has been great! I feel just like I did before I ever got UC, I actually can't believe how good I feel! Ive had to wait awhile before having takedown as my first contast x-ray showed a leak in the pouch. My last contrast x-ray was fine, so I have my takedown on Wednesday - I CAN'T WAIT as I don't like having a bag. If I feel as good after takedown as I do now then I will be so very happy! Surgery was hard and apparently I almost didn't make it, but if I continue to feel this good it will all have been worth it.
Thank you to all the people on here who gave me support when I was facing surgery, your encouraging comments really helped me come to terms with everything!

Veteran Member

Date Joined Feb 2011
Total Posts : 4530
   Posted 6/2/2012 4:42 AM (GMT -7)   
Wow, you had some pretty serious complications. Great to hear you are okay now. I had some complications too after surgery but nothing like what you had. I always tell people I would do the surgeries all over again...complications and a second just to be able to live my life UC free.

My takedown surgery was very uneventful thank goodness but just be prepared for it to be a bit crazy the first few weeks. You will be going to the bathroom a lot in the beginning but it calms down in most people very quickly as your body adjusts. I was back to my regular, crazy daily routine two weeks after takedown. It was so nice getting rid of that bag!

Best of luck with everything! :-) :-)

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy with my results of this surgery-got my life back! :)

Forum Moderator

Date Joined Apr 2004
Total Posts : 23549
   Posted 6/2/2012 5:17 AM (GMT -7)   
I'm glad you made it thru that rough time. That doesn't sound pleasant at all but I am so happy for you that you are now doing better and getting on with your life. Thanks for coming back to share!
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular

Elite Member

Date Joined May 2003
Total Posts : 29856
   Posted 6/2/2012 1:57 PM (GMT -7)   
Hi Joanna, you've been from hell and back! I remember you had a very tough time immediately after your surgery, didn't realise things continued in that direction for a while.

I agree that your surgeon has been the one to get you through this with intervention as quickly as possible. It's also a relief to hear that with your colon in worse shape than imagined, that it's out.

Awesome news to hear you're doing so well at this point...thank you for coming back to share your experience.

I hope the take-down is deserve a fast recovery. Maybe now that you've regained your footing over this period of will be.

Please keep us to you always!
H xx
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Forum Moderator

Date Joined Dec 2008
Total Posts : 15417
   Posted 6/2/2012 3:02 PM (GMT -7)   
I am happy to hear you're doing so well after all you've been through. I didn't know where the story was going and I am so happy to hear such a great outcome.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (2800mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

Regular Member

Date Joined Dec 2005
Total Posts : 83
   Posted 6/2/2012 5:18 PM (GMT -7)   
Thank you all for your well wishes, they are very much appreciated. This forum had been invaluable to me over the years - even though I haven't always posted, I learnt so much from the people on here. Quincy, your recommendations of rectal meds in the past were really useful, and for a while they really did did help me :)
ByeByeUC, I am prepared for it to be a bit crazy after takedown, but I don't mind if I am stuck in the bathroom for 24 hours a day to begin with, as long as I get rid of the bag! It would be nice to have the same experience as you and be back to a normal routine in two weeks, that does sound good! :)
Diagnosed UC 1999
Current meds 2 x 4 Pentasa
Prednisolone - 30mg
Predfoam enema
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 14, 2017 9:53 PM (GMT -7)
There are a total of 2,905,620 posts in 318,876 threads.
View Active Threads

Who's Online
This forum has 158231 registered members. Please welcome our newest member, BBGyrl.
265 Guest(s), 2 Registered Member(s) are currently online.  Details
CatLady18, straydog