need to talk about surgery,remicade,and humira with somone please help

hello all!

i am in the hospital right now and have been hospitalized for almost 2 weeks now... my options as of right now are hopefully going on these meds long enough to finally go into remission or at least lessen my symptoms and then have the j pouch surgery.  i have been doing nothing  but research and i would just like to talk to somone who has actually been through the drugsm and surgery and hear y0ur story and your what has happened with your drug use and surgery.  Any info would be appreciated.

Thanks you so much!

I've had colitis for 24 years,this year has been the first major flare in a long time.From reading all the post and talking to my gastro,surgery is when nothing else will work.BUT you have to give some of these meds time to kick in,we live in a world where we don't want to wait.Some of these meds take weeks and months to work-THAT SUCKS-but what are the options.I am currently on 6MP-75mg-9 WEEKS and i still have very runny stools,but 6mp can take months to kick-in so i try to educate myself on what works best for me while i wait to get better.My gastro has explained that getting your colon removed isn't always the answer,that your new colon doesn't always work like a normal colon should.I'd like to hear from people who have had there colon removed-GOOD LUCK TO ALL 

suebear said...

I had jpouch surgery 8 years ago after a 2 year flare.  I was prednisone dependent.  I had a good 10 years of unremarkable UC until that last flare.  I was steroid dependent and the last drug of choice at the time was 6MP. I gave it 2 years to work before relenting to surgery.  I was deadset against surgery; thought my quality of life would be worse than with steroid dependent UC.  Fortunately I was wrong.   Is life with a jpouch perfect?  No.  Is it predictabe?  Yes!  I am very physically active and med free.  I have never regretted my decision to have surgery and wouldn't take UC back even though there are more treatment options today then there were in 2001.

Sue

Sue,

what has your experience been like since the surgery? what was it like right after surgery? where you in a flare up when you had the surgery? what was recovery like? how long did you have to have the bag if at all? I would like to know any and everything....if it is not to personal...how many BM do you hve a day and has it changed over time? i have read yo9u can have some fecal leakage, do you? do youm  eat diffferently?

sorry for all the questions but i just want to know about peoplesm real life experiences with the surgery or drugs.   Anyone can answer these questions...actually i would love to hear from as many ppl as possilbe.

Thank you so much everyone and keep the responses coming please

what has your experience been like since the surgery?

 

My life post surgery has been great.  I do international hikes in the 100-200 mile range, backpack, and workout at the gym 6 days per week.  I take no medications!!

what was it like right after surgery?

 

I had 2-step surgery and was out from work for 3 weeks.  I had 8 weeks between surgeries and I was out an additional 3 weeks post the second surgery. 

where you in a flare up when you had the surgery?

 

Yes, I had been in a constant 2+ year flare when I opted for surgery.  I was maintaining but still quite ill with anemia.

what was recovery like?

 

Recovery wasn't bad but adapting to the new plumbing took time.  I went camping/hiking 6 weeks out of surgery and traveled through Europe at 3 months.  Six months post surgery I did a half marathon.  This was all while still recovering.

 

 

how long did you have to have the bag if at all?  8 weeks

 

 I would like to know any and everything....if it is not to personal...how many BM do you hve a day and has it changed over time? i have read yo9u can have some fecal leakage, do you? do youm  eat diffferently?

I have a regular diet and don't avoid anything because of my jpouch.  I live mostly on fresh fruit because I love fresh fruit.  I have no idea what my frequency is because most times you pee your pouch empties too.  I had some leakage in the early days which is normal.  Frequency did decrease over time and I think it is still decreasing.

 

 

Hi. My 18 year old son was diagnosed with UC two years ago. Over the last two years his health progressively worsened to the point that his life was completely out of his control. He worked his way through almost all the drugs....went through 3 rounds of prednisone which worked less and less with each flare and spend 8 months giving remicade every chance to work. Our only option left was humira but both my son and our family felt that enough was enough and it was time to take back control of his life. At the same time he was also becoming sicker so the decision was actually being taken out of our hands. 5 weeks ago he had his first surgery toward a J pouch. Since he was so sick they took his colon out and gave him a temporary end ileostomy. This is allowing him to regain his health before the next operation when they will build the pouch and hopefully hook it up. At our hospital about 80% of patients,under these conditions, get the pouch connected and working in the next operation. The amazing thing is that within a few days after surgery, even though he was sore and had to get used to the ileostomy, he felt so much better! I truly believe that he forgot how it felt not to be sick. Also, I said the purpose of this surgery was to regain his health and that is indeed what it has done. I have not seen him so well in two years and he is again enjoying life with his friends and able to make plans and know that he will be able to keep them.

collicat- thank you for your story about your son!  I am so happy to hear that he is getting his life back! That is what i want my quality of life back!

 

 

I have 2 children that i am missing at home and i am going to still be here in the hospital through BOTH of their birthdays :( I am missing huge milestones in my kids lives. My daughter will be 2 on the 14th and my son willbe 10 on the 15th!!   I have been hospitalized so many times in the last 2 months and missed out on so much of mine and my families life that i am very ready to have the surgery. I am not responding to the drugs like i should be and i have had 2 blood tranfusions in the last month because i am losing so much blood.

 

tomorrow i am meeting with a new team of GI specialist to discuss my situation and going to get another scope (yay me....NOT)

I dont want to go on more drugs, i hate taking drugs and they are not working for me.  But i know they really want me to at least get me to a point where i am not in such a bad flare and the surgery would go a little better...that is why they want me to try remicade....i have done a ton of research on it and i am just praying that a very doses of that and i will start to go into remission and will be able to have surgery.

 

has anyone else had to go on remicade just to get into remission to have surgery? if so i would love to hear how it went and how long it took on the remicade.

suebear said...
You can meet others who tried Remicade either to just gain remission or to get well before surgery at www.j-pouch.org

Sue

Thank you for the site!