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Any UC medications After Ileo or J pouch surgery?

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Posted 2/11/2012 9:18 PM (GMT 0)
Hi Everyone,

Just wanted to give everyone a heads up. I have been flaring since November with my UC, so tired, my GI finally agreed to send me back to my Colon Surgeon to talk about surgery options, schedule for Monday February 20. I have had UC for 24 years this coming March and have had enough. Just put me back on Prednisone yesterday I was going 22 times a day with clots and cramps - I hate Pred. We tried entercort, with cortfoam azulfidine and nightly cortenema to no avail. GI said I have refractory UC. Will not tried Remicade or Humira due to lymphoma in 2002.

My question is are any of you with UC still on medication after your ileo or J pouch? And how long did it take for you to feel better after your ileo?


Thank you all!

Renee
Posted 2/11/2012 9:35 PM (GMT 0)
Hi Renee,

congrtulations for taking the step that will make you feel better, in many different ways. Assuming that what you are discussing with your surgeon is a colectomy, that means that after your colon has been removed, it can't hurt you anymore. It Can#t cause you pain, cramps, diarhea, and there won't be anything there that needs to be treated with drugs. So as soon as you taper off the pred, you will never need tot ake it again. We all hate it.

I had my colectomy with ileostoma in April 2011, the surgery to form the jpouch just in December and will have my take-down on March 19th. Some people can have the entire process in just two operations. I had three operations - and you will as well - because if you're on pred you need six months to heal from the colectomy and they don't want to do everything all at once when you're healing slowly beecause of the pred.
Essentially, unless there there are some other things going on, you will not need to take any other medication after the collectomy.
As for feeling better, I felt better imeediately after the colectomy, that is, as soon as I recovered from surgery, which did take a few weeks. I needed several weeks to recover from the 2nd OP as well. The main, general thing is that once the colon is removed, there is nothing left in your body to make you feel bad, the diseased part is gone.
Posted 2/11/2012 10:00 PM (GMT 0)
No meds, and felt better the same day. It is very liberating. Life becomes liveable again.

Good luck!
Posted 2/11/2012 11:58 PM (GMT 0)
B'Dereh,

I am 55 and overweight not sure if I could have the j pouch. Can you tell me how old you are and where did you have your J pouch surgery?

I never thought it would come to the day when my disease would be resistant to medication. I have been flaring off and on for the last 4 years, like non stop. Now I know what it means when I would hear people say all their medications did nothing.

PS My GI told me about one of his patients whose 71 years old, had UC for 10 years and decided to do an ileostomy, he said his patient is like a new man, he has a new lease one life.

Thank you for your reply I love to hear other peoples story?

Renee
Posted 2/12/2012 12:36 AM (GMT 0)
     Hi Renee...I remember you from the UC forum!  Sorry to hear you are still suffering.  Gads, 22 times a day!!! WOW...I didn't have it that bad since my first hospitalization in 1998!  At the time of my operation I was going maybe 6 or 7 times a day, mostly in morning, but when I had to go...I HAD TO GO!!  Portapots all over the house because I could not hold it, plus bleeding..ugh.  Became prednisone dependent.  Good thing you passed on the biologics...they never did anything for me and from what I have been reading over on the UC board, they stop working after awhile, so why put yourself through the worriment of cancer returning.

     OK....after the operation....say bye bye to UC meds.  I went from taking 17 - 25 pills daily down to only 1 pill per day and that is for my blood pressure.  Good riddance to prednisone!!!

     I was not a candidate for j-pouch, so I have a permanent ileo.  perform the j-pouch and it would be worse than me having open heart surgery...more stressful on my system.  He made me pass a My surgeon said I most likely would have to have 3 surgeries to stress echocardiogram prior to my operation too.  I was 63 at the time of my operation.  I am now 65 and, except for my bones (osteoporosis from prednisone), I feel pretty good.  A LOT better than suffering with UP (mine was in the rectum).

     Go to a good colorectal surgeon who has performed many of this type of surgery.  I went to Philly because I don't trust these south Jersey doctors or hospitals.  Best of luck!!!

Posted 2/12/2012 1:17 AM (GMT 0)
Renee, congrats on taking this big step. You are going to feel SO much better after surgery.... I found it almost like a rebirth, as I had been sick so long that I had no perspective on what it was to feel better.

I had indeterminate colitis, and opted for an ileo because it was more likely that I had Crohn's, and I only wanted to do one surgery. Oh well, didn't work out that way, as I needed a second surgery to fix a complication from the first. So, it's been almost a year for me, and I'm almost healed from the complication, but I have had no gi issues at all, and I could feel improvements on the gi front the day after surgery. I was on 40 mg of pred when I decided on surgery, had to taper down to 20 mg for surgery, and then went down the regular 5 mg a week. Since then, I take nothing besides vitamins. I took most of the drugs -- 6MP, asacol, remicade, humira, cimzia, flagyl, etc. So, so glad to not be putting that poison in my body anymore.

You should discuss options w/your surgeon and possibly your gi. There are people w/UC who are candidates for the j pouch who choose a permanent ileo nonetheless. If you're interested, people can share their choices w/you.

If you would have told me years ago that I'd be happy to have the bag, I'd have thought you were nuts, but I am happy to have it. It was easy to adjust to and my quality of life is greatly improved. There's no urgency anymore. It's amazing. You can go somewhere without the first thing you do being finding the bathroom.

Feel free to ask any other questions that you have. There's a lot of knowledge here.
Posted 2/12/2012 2:48 AM (GMT 0)
hi renee, i had UC for 19 years & had to give up work because of it, the final year of it was hell, i was going about 20 times a day too, eventually with colon cancer on the near horizon i was convinced by the docs to opt for surgery, i chose a perm ileo in order to get it over with all in one go, i was dreading being in hosp sharing a ward esp because of the bathroom maddness i was goin thru - as it turned out i was just amazed beyond amazement that after the op i didnt have UC - seems obvious but beforehand i couldnt have imagined being without the symptoms i had been living with for so long - sure there were a bunch of new things to get used to in the days / weeks after the op but at least as each day went by i was getting my life back - initially the days went by slowly but eventually after 6 weeks i felt a real sign of real recovery - it has worked out well for me ( i know others have had ongoing complications & my heart goes out to them) & nearly 2 years on i can do anything i want, its unreal

when speaking to your doc ask whether you will have to do a bowel prep routine before the op - its probably a small thing in the overall but this was something i was not looking forward to - it turned out that i didnt have to the prep & it made my arrival to the hosp & the night before the op just a little easier

i wish you well
Posted 2/12/2012 4:45 AM (GMT 0)
Hubby needed no more of the UC meds after surgery like everyone else. The only thing aside from his cholesterol medication and a few others not related to the UC he had pain medication that needed to be tapered. He weaned off those very successfully.
Posted 2/12/2012 9:21 AM (GMT 0)
Renee,

why do you think you might not be able to have the jpouch? Even if age is a factor, I don't think 55 is considered "old" by doctors. about being overweight - I don't know if that is a factor, it depends on how overweight. Worse case scenario, your doctor might say you shold lose weight. But I remember my doctor tell me that the process is complicated if someone is obese or if someone is underweight to begin with. Being a jpouch candidate is something the surgeon has to decide, but I don't see any reason why you should stress yourself about it until a doctor says something clear.
I live in Germany, and have all my surgeries here.
Posted 2/12/2012 12:46 PM (GMT 0)
You are all wonderful!, when I post I look forward to hearing all your replies. I have a smile on my face now! He asked me if I have any support and I said yes, Healing Well.com, he had me write down the website so he could give to some of his patients.

I see my surgeon on Monday, february 20, it can't come fast enough.
Posted 2/12/2012 1:26 PM (GMT 0)
I'm really glad we could encourage you. I did not look forward to my first conversation with my surgeon, he was the 2nd doctor to tell me it had to be done and I didn't really have a decision to make. I cried through the entire conversation, even though he was trying, or not trying, really being positive and realistic about it, even funny.
I think the important thing is to make this decision when the meds stop working. I had to accept that it was not going to get better ... but only worse, and I wasn't prepared to go through anythings worse. I wasn't even having that much pain, but had no energy to live my life or come any further or anything. Since I had the collectomy, I started a new, high-responsibility job, moved to a better apartment, worked on my own writing project, had the 2nd surgery and am schedule for final take-down on March 19th. Having surgery can only make things better, all around.
Don't forget to prepare your comprehensive list of questions for the surgeon; everyone here will through in their two cents about it, but you don't have to absorb more information than you need at each stage.
Posted 2/12/2012 3:13 PM (GMT 0)
     Like villager, my surgeon did not require me to do the bowel prep either.  Even the physician assistant was kinda stunned because he was the one who told me to do the Miralax..lol.  At my pre-op visit I asked my surgeon if I needed a script for the bowel cleanse and he said..."no bowel cleanse needed, just drink clear liquids for 24 hrs before the operation." shocked    Music to my ears.  Just to be on the safe side though, I stayed on clear fluids for 48 hrs tongue .  No problems post op. 
Posted 2/12/2012 5:27 PM (GMT 0)
Also, how long is surgery? Do they remove your colon laproscopically or open incision?

thanks, Renee
Posted 2/12/2012 5:48 PM (GMT 0)
I had everything done lapro, that means two little keyholes on the abdomen, and one horizontal incision just above the public hair, six centimeters across.
Make sure the surgeon can do lapro. Then they always tell you just before surgery that if for any reason they need to operate with a full open incision, they will do that.
Posted 2/12/2012 5:50 PM (GMT 0)
Renee,

My daughter was 15 years old when she had her surgery. Was taking 15 plus pills a day. She is taking nothing now. Well, vitamins when she remembers to take them.

Her surgery was in 2-steps. Hers was done laproscopically, only has about a 2-3inch scar. Her first surgery was about seven and a half hours. As for feeling better, she felt better that same day as surgery. She cried and said she was so happy her stomach doesn't hurt anymore.

Surgery got her life back for her.
Posted 2/12/2012 6:07 PM (GMT 0)
If they do it in three steps, the surgeries are a bit shorter. My first OP was 4.5 hours, the second one, well I don't know how long it was, but take-down it is going to be 30 minutes.
Posted 2/13/2012 7:59 AM (GMT 0)
Salamore,

First, congrats on your decision! You are on your way to recovery even if your body doesn't feel it yet.

Second, I am not going to kid you..i was on Prednisone on/off for 15 years..the last 7 years of those 15 I was on prednisone straight..20mg/day min...up to 40mg/day for some durations...

I had surgery on April 14, 2011...my surgeon, and everyone's brother, wanted me off of prednisone FAST..well, i took my last pill in June of same year (or, so i thought)..

I was still feeling like c-r-a-p in Sept. and went to see my general practitioner (told her long story..that is for another thread). Anyway, she said in her opinion, they had taken me off of prednison too FAST..so, she put me on 5 mg/day...well..here it is February 2012..i weaned off in Dec./Jan..and, am not on any pred...it may be i might need to take a pill or two now and then..but, that is a small price to pay for feeling much better....

So, generally, most folks get off all medications by a few weeks, to a few months, after surgery..I guess it depends on how long you were on the prednisone (or other medicine).

God Bless and please keep us posted!

jimmy
Posted 2/13/2012 11:20 AM (GMT 0)
No meds since my ileo surgery 35 years ago :) I do know some people with a j pouch who take immodium regularly to thicken things up for them but that doesn't apply to everyone.
Posted 2/13/2012 2:12 PM (GMT 0)
No meds since my jpouch surgery 11 years ago.

Sue
Posted 2/13/2012 3:19 PM (GMT 0)
Jimmy, wow you took a lot of pred. Have you had a bone density scan? If so, how was it?

Correct me if I'm wrong, but you had to go back on pred because of your prior pred use, not because of IBD symptoms, right? I'd imagine that your body just stopped making cortisol on its own. So, your situation is relevant to Renee only if she too has a heavy history of pred use.

I was on a lot of pred too, almost every day for the last year and a half or so before surgery -- my gi was pretty adamant that I couldn't stay on it much longer.

Nasty stuff. Hope you are off of it for good.
Posted 2/13/2012 3:39 PM (GMT 0)
Anyone with CD here with an ileo who is off all meds?
My understanding is with an ileo and UC you should be off meds, but if you have a jpouch you might have to take meds (pouchitis, cuffitis, imodium etc) but I'm curious about the experience of people with CD and meds?
Posted 2/13/2012 5:47 PM (GMT 0)
My son had his colectomy and J pouch surgery for UC almost two years ago....he was tapered off prednisone over a couple of months and since then no meds at all except for some imodium which he takes most days.

He and I were actually talking about his surgery just yesterday. He had been very sick with UC for a couple of years and he says that now that time feels like it happened to another person and he is pretty much forgetting about it. He remembers his life before UC and his life now as a completely healthy person. He also said that he had no idea, at the time, how sick he was. Not until he had regained his health did he realize how out of control his life was.

I wish you all the best. To me the most important aspect to this surgery is to get the very best colo-rectal surgeon that you have access to. You want someone who has done a lot of these operations and does them all the time.
Posted 2/13/2012 6:14 PM (GMT 0)
Rennee-

I felt hugely better almost immediately after my 1st step of 3 step surgery. Mine was emergencey as even IV steroids in the hospital would not get the massive flare under control. Surgery was done laproscopically. Once I was fully weaned off predinisone, I was drug free and feeling great. HOWEVER, I proceeded forward with jpouch process.. the two additional surgeries. And have had significant problems. Please be sure to do your research thoroughly about the jpouch. My surgeon never presented the option about keeping with just an ileo, and I do regret not investigating that. An extremely large percent of jpouchers end up with pouchitis and cuffitis. The treatement for that is UC drugs for cuffitis and all sorts of antibiotics for pouchitis. There are many that are antibiotic dependant and even antibiotic resistant, presenting all sorts of problems.  I  am now on a path to have the jpouch completely removed so I can get fully well and med-free!

good luck moving forward.

Posted 2/13/2012 6:48 PM (GMT 0)

killcolitis said...
Anyone with CD here with an ileo who is off all meds?

I'm still officially indeterminate, but it's more likely that I have Crohn's, and I'm off meds. I was told that for someone w/Crohn's colitis who had never had small intestine involvement, that there was an 85% chance that surgery was a cure, and when there were complications (from Crohn's, not from surgery) they tended to be localized near the stoma and easy to treat.
Posted 2/13/2012 6:51 PM (GMT 0)
Ddd: I'm sorry you've had problems with your pouch, but can you define "extremely large percent"?

To the original poster: I am currently not on any daily meds. I do have Imodium that I can take if I need to slow things down, but most days I don't need it. I did have to do a Prednisone taper after step 1 to get me off of steroids safely.

I was a good bit overweight going into my colectomy, so my surgeon required me to do three steps for my j-pouch. I got my colon out and got an ileo. We then waited about seven months during which time I got down to a healthy weight and then we went ahead with the rest of the process. My surgeon does all of his surgeries with open incisions, so make sure you ask the surgeon you talk to about their technique and what your choices are.
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