Community Forum

Hi all,

After suffering for three years with UC, I am having the complete removal of my colon. Any suggestions on the recovery? I am scared about the surgery but I am also optimistic that I would return to a normal life again. I have been hospitalized numerous times and my colitis never seems to go into remission. After these long three years, I am going to end this battle. How has life changed for you since having this surgery? Any thoughts or wisdom words? I would really appreciated.

 Reply posted for kfelix0319.

Hi, 
l did have my surgery and it has been rough. I am having the Jpouch. It is not that bad dealing with the surgery and the bag. The pain is gone and also the anxiety of always having to look for a restroom. I had to fly an eight hour flight and I did very well. I actually felt like a normal person. I only went to the restroom when I had to empty my bag. The first few weeks after surgery are a little hard but as soon as you get your strength back, you feel and do more things. The surgery relieved my pain and I don't have to be in all that medication. I also do not have that gut renching pain. The surgery is not that bad, as for me it gave me more control. Good luck, and I hope you get some relief soon!

 Reply posted for marielac2.

How are you doing since your surgery. Sounds like I'm in the same sinking boat you were
in. I have had UC for 3 years too and nothing is working. I am currently on Humira and doesn;t
seem to be working. Are you doing the JPouch or just deal with the bag forever. Anyway would
love your thoughts. I hope you are doing well.

 Reply posted for marielac2.

If you have not had surgery yet, there is another treatment to try.  Fecal Transplant.  After suffering form IBD since 1977, i tried FT six months ago and am now in remission/cured? - I am on NO MEDS.  I just got an email from a man whose 14 yr old son was hospitalized and not responding to any meds.  Surgery was the next step.  After reading my posts on FT, he insisted that they treat his son using FT.  His son is now out of the hospital and getting better slowly.  There are only a few doctors treating UC with FT. However, quite a few are using FT to treat cdiff because it cures cdiff 90-95% of the time.  If they can treat someone for cdiff, they can treat for UC too, especially for someone who has run out of options.

He was facing surgery. Now he is not.  

You have nothing to lose.  

email me at ed_bondo@comcast.net if you want to find providers who will treat you. 

 Reply posted for murfyp.

Hi, 
I had my surgery 2-1/2 weeks ago and has been rough. Yeah, you definitely need a good support system. Good luck, regardless of what happens always think positive. I am still in the healing process, I am hoping for a full recovery. Remember you are not alone you have all of us hear for support.

 Reply posted for AmandaNL82.

I am facing a surgery as well.  I am anxious to get my life back after 11 years of dealing with UC but am having a hard time getting my head wrapped around it.  I am out of medications that help, so surgery is my last hope at a normal life.  Any advise for me and my caregivers that can help with the healing process?  My husband works out of town, so I will be depending on other family members, friends and neighbors for support. 

Thank you.
Murfy

 Reply posted for marielac2.

I think it took about 4 weeks after the first surgery to get back to "normal," i.e. going back to work, resuming normal social activities, etc.

I have a blog about my surgeries, recovery, complications, etc. :  mymisbehavingcolon.wordpress.com

 Reply posted for sharbear1611.

Sorry I meant to say I am now considering the jpouch ;) 

 Reply posted for marielac2.

I have had UC for 15 years and I am not considering the J pouch as well.  I have 3 kids and I am tired of always being sick, not being able to go out on nature hikes for fear of no bathroom, all the side effects from meds, etc. etc etc.  I feel like my quality of life will be so much better afterward.  

 Reply posted for AmandaNL82.

Hi,
Thank you for the response, I really appreciated. I am scared because I do not know how my body will react to such change. It makes me feel a lot better that I am not alone. Hopefully, is for the best and my life will return to somewhat 'normal.' If I could remember what 'normal' is. How long did it take you to recover from the first operation?

 Reply posted for marielac2.

I'm not going to lie to you - the recovery is ROUGH.  It'll be a long, hard road - but there's a reward at the end!  It's definitely worth it if you consider having a "normal" life afterwards - being able to leave the house without worrying where the closest bathroom is, getting rid of all the awful side effects of the medications you're taking, and being HEALTHY!