Is a normal life possible?

Most J-Pouchers have quite normal lives. Some have ongoing problems, either from bad luck or bad medical care.

I agree with Scott. 

We don't hear from those whose work well. 

And if it wasn't a solution that worked and only caused problems like we read here they wouldn't suggest the procedure. My opinion. Mine only.

Richard. 

Normal is a relative term.  Are things the same as before having UC/Crohns in the first place? No. There is a new "normal". I know that I am better off than I was 13 years ago when I had my surgeries. I'm learning what my pouch likes and dislikes.  I'm thankful for my GI who helped me find medicines that have really helped me be able to live a good life with my j-pouch. Are there days I want to throw the towel in? Yep, but things are a whole lot better than they were.

Just my 2 cents worth

Still Standing posted:

Normal is a relative term.  Are things the same as before having UC/Crohns in the first place? No. There is a new "normal". 

I totally agree. I consider myself to have a very normal life. But would the OP consider taking Remicade for 4 years & antibiotics for 24 to maintain a good quality of life to be normal? It’s my new normal, as is some chronic low grade inflammation. However I think the resultant quality of life achieved is normal.

My pre UC days were before age 9. I am now 56 years old. I have lived with 47 years of IBD. The BUC days (before UC) are a blip on my memory radar. All that matters is BC as in before colectomy and AC as in after colectomy. AC is much better.

I don't want to be "like before" the pouch, life was hell...at the time I had said, any improvement is better than what I was living. Then I had my k pouch and I started living. Not perfect (I wasn't perfect to start with) but better. I have my days, life improves over time with self-knowledge and a few lessons on biology, chemistry and nutrition. Once you figure out what works for you and what does not it makes life simple...you also need a lot of time for your body to acclimate to its new biology. 

Yes, some of us still suffer or worse, regret their decisions but most do not. You must understand that we suffer, for the most part, from an underlying disease that does not necessarily leave our bodies with our colons.

It is still there trying to wreak havoc on other parts of our anatomy...is it better than before, yes, is it better than the complications of an outside bag? For most of us but not all...yes. But do not expect miracles, just improvement.

Sharon

Our new normal is absolutely possible. A colon before UC or whatever your reason for surgery was your old normal. Things will not be like that again. You have no colon. It's really early days for you. You will  get to your new normal. You just have to know that it does get better. It doesn't happen in a week or a month. It takes time. We've all been through a lot. You aren't alone. Try to be patient, it will happen.

CTBarrister posted:

Still Standing posted:

Normal is a relative term.  Are things the same as before having UC/Crohns in the first place? No. There is a new "normal". 

I totally agree. I consider myself to have a very normal life. But would the OP consider taking Remicade for 4 years & antibiotics for 24 to maintain a good quality of life to be normal? It’s my new normal, as is some chronic low grade inflammation. However I think the resultant quality of life achieved is normal.

My pre UC days were before age 9. I am now 56 years old. I have lived with 47 years of IBD. The BUC days (before UC) are a blip on my memory radar. All that matters is BC as in before colectomy and AC as in after colectomy. AC is much better.

I was on remicade before. Wouldn't I have delevoped antibodies to it now? Would it ever work for a J-pouch again when it was already ineffective for colitis?

I asked this in this forum but nobody seems to know the answer and tells me I probably never have to worry about it. But I do worry. I got the surgery because I exhausted all my medical options. Would going back to biologicals be an option for me at this point? I tried remicade, humira, simponi and xeljanz. 

Do you have a diagnosis of something like Crohn's or chronic pouchitis that warrants having to try biologics?

I know you don't want to hear it again, but you are a relatively new j poucher.  It took me a long time to adjust to the pouch and I'm assuming it will take a while for you to adjust too.  On that note, it took a long time before I found a GI who helped me get on a good medicine routine to help my pouch behave. Don't give up the fight yet!

You may have developed antibodies against the biologics you've already tried and I'd encourage you to have them checked before taking any of them; but there are still others to try. I'm amazed at all the new medicines developed that are helping us j pouchers live better lives.  Sometimes it is a combination of medicines. I'd find a good GI who is willing to work with you. (Unfortunately, not all do.)

Often a GI will prescribe antibiotics before going the biologic route.  If those don't appear to be working, which was the case with me, then they may suggest a biologic.  Along with Entyvio, I take Budesonide and Imuran.  I also take Antripoline and lomotil at bedtime. 

First of all you need to have chronic long term inflammation in the Pouch before treatment with any biological drug is warranted. Usually antibiotics are attempted before biological drugs so you seem to possibly be jumping the gun here.

Second, if so, it would be the GI’s call as to whether to use Remicade or not. Either it worked or It didn’t and you developed antibodies or you did not. Usually when antibodies are developed it’s not a mystery to the patient or the doctor. The second biological drug favored by my GI for Pouch patients is Entyvio. So if you did develop antibodies to Remicade they would probably try Entyvio second.

Again, the treatment modalities are usually antibiotics first and biological drugs second. There are various options in biological drugs if antibodies or reactions are experienced.

Thank you all for your replies. I understand that being on biologicals is rare. In my case I have never been able to be without medication and now I'm without them after the colectomy and I believe I have extraintestinal manifestation of ulcerative colitis. I just want to be able to do normal things and live my life. 

Next to normal I'd say . I need a toilet every 8-10 hours . 3-4 times a day. Sometimes I can hold upto 12 hours but thats rare. I eat food just to maintain my body's protein requirements and daily calorie needs . Cheats and high sugar foods very rarely now. Sugar for some reason is still an issue. My Surgeon said over the time you'll tolerate it better but I can't and I have accepted it. Except for chocolates there's nothing missing from my life. It been a year now since takedown.

@Raj how is sugar affecting you? 

Well, I'm convinced I'm still flaring and I should be on some sort of immunosuppressant.

I'm gonna tell a true story about remicade and its blunt in areas 

Before I had my colon removed that's about the 3-5th thing they tried. Remicade.  Worked like a charm. I was miserable. Period. My uc was only just a few inches inside my anus. Rest of my colon was fine. But that little bit wrecked havoc on me. Which is surprising. I've seen pics of it and only a few ulcers.  They put me on Remicade and nobody believes me but I felt a difference that day!  Right after that I could poop a train!  A solid solid 6-10 inches long unbroken. That's the blunt part. It felt so good to poop and to poop like that was a small miracle in itself. Prior to that it was bloody painful diarrhea. 

About a year doing fine with Remicade I developed a hernia. So to have that surgery they wanted me off Remicade. OK. Have the surgery and I go back on Remicade. 

Never worked again. None of the biological drugs worked. It was back to pure hell. 

The worst thing about it while exploring pouches a surgeon said they should have never stopped the Remicade for the surgery. Bam!  

So now my colon is gone and it's as normal as I will be. 

But I'm good with it. 

That's my Remicade story. It worked and it worked so well I was surprised. Because I was really sick. That all went away because of Remicade. Liquid gold the nurses called it. 7 grand per bag. Ya. Expensive. 

So I guess if it works it works and you'll know it does  I did. 

I tried humira. One other. Stelara? It was an injection also but it's been awhile. I don't remember. Neither one of those did anything.

Moral of my story is if you get on it and it works. Don't stop! Because it may not work again.

I never tried it with my pouch. I had a healthy pouch. Just didn't work. So that's gone now too. And this is my normal. I'm OK with it too. No pain. Normal. 

Richard. 

Richard, I was on remicade and it worked. Like you, I felt the difference the next day and everything g was healed and I had a normal bowel movement. I cried happy tears sitting on the toilet. I had to change frequencies from 8 to 6 weeks but it was still effective. I came off of it because I moved to a different country. My GI wanted me back on it but I had no way of paying for the infusion. That's why I didn't go back on it and now it's been years and I do not know of it would ever work again anyways.

I don't know what specialist doctor to see now since I no longer have GI issues but extraintestinal manifestations. 

I am just here because my DH had UC and now a Jpouch. He has a rather normal life. Without the operation, we wouldn't have been able to have our son. He has had some ups and downs in the 24 or so years that he has had his jpouch. However, I think it is safe to say, he has done okay. :-)

EIMs  would be in the realm of a GI doc. If you think this is something that you have it would be a good idea for you to get a good GI doctor to make a dx . He can tell you if you will need to take a biologics or not. You could be worrying your self for nothing. It's very possible you are going through normal healing process, given the short time you have had a pouch. However, it you really think you have EIMs, the first step for you would be to find a good GI and get a dx. Good luck. Hope things get better for you soon.

Aimee

Well I don't know if I jinxed myself but I need to be back on azathioprine. At least that's what the doctor prescribed. My auto immune disease did not go away with the colectomy. It came back as arthritis caused by inflammation in flares. I'm devasted. I was at the end of medical rope. What will happen to me now? 

I've been on azathioprine for 6 days already and yesterday was the first day of complete normal temperature and not needing Tylenol. It's been 3 days not needing Tylenol to be able to get up in the morning. No one ever believes me but I metabolize azathioprine really fast and I thought at first I'm imagining it but not needing Tylenol when I needed 3-4 a day before is quite telling.