Feel like I will never be normal again

Hi everyone, second time posting here it's been awhile but I have lurked the forums religiously the past month or so. I only had colitis for 4ish years, only had two really bad flares but apparently that is all it takes to require surgery. I was hospitalized in January after being in remission for about 3 years and was pumped full of iv steroids. Entyvio stopped working, infliximab didn't work and the iv steroids didn't do anything so I was recommended to do surgery. I was upset because I didn't want to but they said the inflammation was quite bad and that I would be better off without a colon. It is so easy to say but not so easy now that I am home dealing with the bag. Thinking about the J-pouch and all its complications and reading about the failures. I am depressed and I am scared about my future. I am worried I will never go back to the way things were before. IL either have to live with a bag the rest of my life or live with a J-pouch that may or may not work. Even with a pouch I am told IL have to watch what I eat quite carefully, plan my meals so I Don't have to poop at night, take Imodium and metamucil. I probably won't be able to have beer again as it made me gassy and that's bad with a jpouch from what I've heard. I know I am on a tangent and I know I am throwing a bit of a pity party and for that I apologize. I am just frustrated and I Don't know what to do. I want to feel normal again. I get there is adjusting to a new normal as it were but I was doing so well 5 weeks ago and now it just is a whirlwind of bad things.

I was so sick for so long that I was begging for surgery.

I'm not sure what you consider failure?

I sleep through the night, I am very regular 3 times a day but I have chronic pouchitis. I have to treat it with Stelara.

Is that a failure? I love my j-pouch, it is so much better than living with UC. My quality of life was zero.

The surgeries are not easy but I consider them to be worth it for my situation. Living with a bag took a little getting used to but I found it to be manageable with the right supplies (trial and error).

I had 3 beers and chinese food last night without any problems. I love wine and the occasional manhattan.

I had 3 step surgery last year. Most people who have it seem to have minor issues afterwards. I eat whatever I want. If u get it in your head that life sucks then it will suck. I choose to accept any challenge surgery might throw at me. My life is a 360 compared to my UC days. Now I want a smile on your face. Stay on here and help others who are where u were before your surgery. Get out of yourself and life gets better. We love u here. Now start loving yourself. Smile

You've probably increased your odds of a longer life by ruling out Colon cancer which ranked #3 on the list of common cancers last year according to cancer.org. That's one thing to be happy about. I know it can be hard to find things to be happy about after such a surgery, I myself had the Jpouch surgeries done in three steps and the mental barrier of living without your colon but we as humans are amazing at adapting to every circumstance, sometimes that takes time like in the case of an Ostomy, it can take weeks, months even years but eventually for the majority of people who have them they are second nature.

Even if your Jpouch doesn't work out you can always go back to an Ileostomy, though I'm sure that doesn't sound all that great right now to you, it would however mean that at the very least it can't get worse than this for you in the long run as far as this disease, sure the surgeries themselves have their ups and downs but when all is said and done it's only up from here for you and that's something to find peace in you, after suffering so long with Colitis like a lot of us.

I had the removal surgery and pouch removed it was fairly large, but after going through three to get there you're already a veteran and what's another surgery.. Mine did not work, for whatever reason, the majority of Jpoucher's are happy about theirs. But then even after all these surgeries I could of just had the one, I don't regret trying the Jpouch, I'd of been harder to live mentally for me not knowing how life would of went had I not tried the Pouch. And even though I'm missing about 12 inches of Small Intestine and my Colon I take no medication and have more energy than some of the guys I work with who are 10 years younger. I'm 31 by the way. I deal with a bit of dehydration in the summer if I'm not careful but other than that I feel normal.

I'd assume the majority of people who are happy with their Jpouch's don't go around posting on forums, it's the smaller percentage of problemed pouches who do most the posting. Hope for the best.

Post Edited (Virdent) : 2/20/2019 8:19:53 PM (GMT-7)

Hey everyone I really appreciate you guys taking the time to read and write out something I am doing my best to try and get in a better mindset.

Woogy - I am feeling okay, my day's usually have been having there up's and downs... I get quite depressed in the mornings and then the afternoons/evenings I usually have a bit better attitude towards everything. As far as physically I feel okay too. The bag's not terrible, I am lucky to have not had any leaks or anything but it is a weird feeling having it on me. I am glad the surgery's went well for you, I really hope that I can have a good result too.

3timechamp - Thank you your comment really made me smile I have to accept the fact I had to have surgery it just is hard sometimes when a couple weeks ago(beginning of january/end of december) I was pretty much in a state of remission and now I have my new years resolutions being stripped away from me and its a 180 from everything I had planned for myself. Including possibly losing my job to this surgery/UC. It is hard to come to grips with.

RunJerRun - Thank you for your advice I know I will eventually return to feeling like myself again but it is hard to think about the future right now with all the surgery's planned and recovery times etc. I am sorry about the past year that you have been having it sounds pretty tough but I am happy that you are getting to do the things you want to. Sadly I have already fallen into that trap and have read countless stories about failed jpouches, part of the reason I have been so depressed is because I am so unsure whether or not it will work for me. I have been trying to counteract it with positive ones but its a tough mental game sometimes.

Virdent - I suppose that is a good way to look at it. My boyfriend also tells me this to cheer me up when I am down that I won't have to worry about colon cancer now. You are right on that it can't get worse at this point and I did have a really successful first surgery. We do adapt quite well, I feel I eventually will have to adapt but right now thinking about it seems so difficult. Sad thing was I wasn't suffering too long with colitis, I had just failed most of the meds. I suffered with some symptoms sure and the only two flares I had were very bad ones but overall I had been pretty good up until a few weeks ago. That's my mental barrier is that is happened so fast all of this stuff it is overwhelming to say the least. I am sorry that the pouch did not work for you but glad you feel good still. I keep hearing that and want to believe that those people that are happy with their pouches are all living their lives, hard to believe it sometimes though.

ks1905 - I would consider a failure to be having to have the pouch taken out and replaced with a illeostomy(assuming that is what you meant) I don't mind having to go more than the average person or to deal with butt burn etc. I have read all that stuff and it doesn't phase me but having it so bad it has to be taken out is what I consider a failure. I really hope I get to a point where I can also have beers and chinese food with a jpouch! That's the goal. Yea my surgery was 10 days ago, very recent but I am at home. I got released from the hospital quite quickly after my surgery because I did so well(luckily). Before my surgery, I hadn't even lost any weight or my appetite this last flare so I guess it's still hard to wrap my head around because I wasn't extremely sick. However I was still going 10-15 times with 60mg of IV steroids and two loading doses of infliximab in my system(administered 4 days apart). I get down in the dumps a lot of the time wondering if I should have pushed to try a different drug like humira, xeljanz or a clinical trial but I can't be doing that anymore because I suppose what's done is done. Regardless for me I guess it is hard to think about because I truly was healthy and in remission about a month ago and now I am 10 days post-op with no colon.

True enough, I guess surgery really was my last option.

I had no problem skipping Entyvio and going right to surgery. I was miserable and didn't want to wait anymore but I justified it to myself as saving Entyvio for future use if I ever developed chronic pouchitis -- which I did develop. I haven't used it yet because my GI prefers Stelara over Entyvio. Stelara is also faster acting.

Yea below the belly button. I have an update, turns out I haven't been feeling myself for more than one reason. I am still on prednisone just because of my recent flare I am tapering down. This past week I was on 20mg and tapered down to 15mg. I instantly felt better the next day and more like myself, not having to cry every half an hour or so. Turns out I was having really bad mood swings from it. Feeling a lot better now and trying to have a positive outlook on the future thank you guys for all the advice it definetily helped me get through last week.

Be prepared when you fully taper off of Prednisone, you will have withdrawal effects and they are not fun but they are manageable if you are aware that they are the cause of the moodswings, sleeplessness, joint pains, etc...