Do I need to change my expectations or medications?

I've had uc since 2012. I've had 3 major flares and a few minor. I've been hospitalized twice. I've quickly jumped the med ladder from lialda and rowasa to remicade and 6mp. I use rectals. So my question is...

Are my expectations of how I should be feeling/symptoms not in line with the disease or do I need to change/add medications?

I've been on remicade since Feb 2015. Since then I've only been in remission for 10 months. Remicade immediately put me into remission after the loading doses. Then 4 months later I had another flare that really hasn't ended. I've been on a double dose since October 2015. We added 6 mp in June 2016. That changed things for the better. But I'm never 100%.

As of now I go every 6 weeks for 10 mg/kg. I'm on 50 mg of 6 mp. I can't get off steroid rectals. Everytime I try and taper and am close to getting off of them blood and mucus come back. However, it's very minor. I go once in the morning with no urgency, slight cramping right before I go, sometimes a few streaks of blood on the stool and mucus on the tp. I haven't had bowls of blood since I started 6 mp. I rarely ever go more than once. I don't have d, it's formed and solid.

So is this my new normal? As good as it gets? Should I continue the exhausting fight for a solid remission (which I've had twice since diagnosis) or do I accept this as where I will be and stay on uceris foam as needed? Side note- rowasa stopped agreeing with my body and starting causing issues before I started Remicade.

I have the option of switching biologics and trying entyvio. Is it worth it with my current state? What if it doesn't hold me like my current regiment does? What if it pushes me into remission?

Honestly (for me) the disease is as emotionally and mentally taxing as it is physically. I'm so tired of fighting. I'm so tired of seeing random blood. In my head it's still an open sore and bad enough inflammation to bleed. Even if the area is only the size of a quarter. I feel like I should be grateful. I know how bad it can get. I've been there. But still seeing blood is mentally exhausting for me. And I do not want to be on steroids in any form.

I want surgery at some point even tho my gi doesn't agree. At this point I have to go for 3 hour infusions, put meds up my butt, fear germs from my kids and even walking in flip flops, and fear needing antibiotics from random kid sicknesses, I have chronic nosebleeds, I have dermatitis around my mouth, having eyelid inflammation, I'm getting moles and warts, I just had skin cancer removed from my chest. I'm 36 years old!!!!!! I know it's from being immunosuppressed and uc showing it's ugly head in other ways.

Sorry for the rant. I'm just exhausted.

I have met with 2 surgeons. I know the ins and outs, pros and cons, recovery times, and complications that can arise. In theory it's what I want. However my GI says if I were to attempt to move forward that no surgeon would operate for 1-2 inches of inflammation. I don't necessarily think that's the truth. And I have another GI on board as my second opinion at the hospital where I would have it done...who believes surgery doesn't have to be the last resort.

Am I wrong in thinking that with all the meds I am on I shouldn't be bleeding? Am I supposed to change my meds and try something different? Do my current symptoms warrant how I am feeling about everything?

I know our goal as IBDers is remission...but do some people get close and just live with it?? I always assumed I would fight until I was in remission. But I don't know how much more I've got left to fight with. Now with all these "extras" it's overwhelming.

Tough questions. Sonetimes we heal very slowly and waiting can produce results. I gave up on achieving remission and it just sort of happened after crazy slow improvements.

It's a gamble saying will switching from remicade to entyvio make things better? Yes it could and thrn again it might not. There's only one way to findout.

We've had posters have surgery due to a quarter sized patch of severe inflammation that won't respond to anything. So I call BS on your gasteroenterologistxs assessment.

Sounds like your doc is bullying you (with hope as the reason) and it's your butt and life....which no one can understand better than you.

I'm not one who would go up the med scale out of desperation, so i would push for surgery. In saying that, there have been some with j-pouch who are still having issues....but I don't know if one with issues can have removal of it and go back to a bag.

Point is your own quality of life and what you envision for yourself....if you choose to give the other meds fair try, with no results, then push for surgery.
Are there any studies your doc can set you up in?

I'm not in your situation, but I know my limits and tolerance, and you have done amazingly with all you deal with. Suffering isn't something anyone should have to do at the urging of another. I understand the hope of trying.

Suebear is one who had removal of her colon with only 2 inches of severe inflammation.

Hugs,
q

suebear is moderator of the ostomies forum.....i think you should contact her with questions, for i believe she will give you a good perspective and excellent info.

I think with you having UC compared to CD have more straight forward concerns, but individual issues always always vary.

Are family and friends supportive of surgery?

q

I would have lived with a lot, lot worse before considering surgery. I guess we're all different but if I had been in your shoes I wouldn't have contemplated surgery in a million years. And I don't think my surgeon would have agreed to removing a 99% healthy colon.

Totes....good to hear family are supportive. Hard to convince sometimes...
Hope suebear is able to answer some questions and offer more insigh of things not considered.

Please keep us updated on this.

q

I can't help thinking that with everything that you are throwing at your UC you would expect to be in complete remission!

It seems like an awful lot of Medications for you to still be showing small amounts of blood, which still equates to inflammation. I think changing to entyvio is a big gamble for you, because even with all that you are taking now you are still not in remission, and so who knows if entryvio will work or not, it is a difficult decision and I cant help but wonder if it is worth the risk?

I think in your shoes I would seriously start to think about surgery..my two cents!

Whatever you decide best of luck.

Once again we seem to follow a parallel journey! I recently switched GIs and his PA looked at me like I was crazy because I mentioned surgery. By all accounts I'm in remission except one pesky small area of bowel which we will confirm in a couple of weeks with a colonoscopy.

The new GI suggested we switch from every 6 weeks at normal dose to every 8 weeks at double dose after we get my trough levels back next week. Are you currently on normal or double? I'm not sure how that will work out but he seems to think it's a better route.

I'm so much better than I was before remicade but i feel the same as you...too many dr visits, pokes and prods, meds with side effects and potential side effects, food diets tha never work. I just want to bite the bullet and have the surgery but it's a scary prospect. And even scarier when you are not suffering. I'm living an almost normal life and would feel differently if I was home bound or in pain or pooping my pants.

I think that's a key point that sometimes we all forget. The internet is always full of worst case scenarios. Its best to come to your own conclusions. This group is very supportive, and has been invaluable to me several times (before I started posting).

@kkidz- yes we do seem to be on a parallel journey. I am on a double dose every 6 weeks. It may help push you over the hump and I sure hope it does. What are your current symptoms??

It's so frustrating. It's like I'm right there and have a few good days but the blood always seems to pop back in with a little mucus. No rhyme or reason. I think even if I ate the same food every single day it wld the same- random blood, regardless of rectals.

I feel the exact same way about surgery. I'm ready but scared to make the decision. And yessss I know what's it's like to be housebound and I'm not close to that. But at the same time I still have to take all these meds and steroid rectals and I'm not 100%. It's never ending. I counted yesterday. I have to see 7 drs right now.

@nssg- hi! Ive read All your posts about surgery and really like your perspective. I know it's a rough go and the outcomes can vary. But I list all the things I deal w now and what could happen if I get surgery and at its worst case it's better than being in a perpetual flare. The move to entyvio is a big risk but like Quincy said it's the illusion of hope that it could work and be better than I am now.

I feel so stuck.

@oli- I've asked that a bunch of times. I was told they won't do it because uc will come back in another place in the colon. I would love to have the area removed. It's been my only problem for 3 years. Started out as 4 inches and is down to 1 inch. Is this an option I just need to find the right surgeon for?? I never asked my surgeon only my gi.

NCOT- please don't assume you know everything. I HAVE to go to the doctors right NOW. My eyelid keeps getting infected. So there's the eye doctor. I have dermatitis around my mouth and skin cancer on my chest. So there's the dermatologist. I have chronic nose bleeds. So there's the Ent to keep getting cauterized. There's my gi. I go every 3 months. There's my infusion center for remicade every 6 weeks. My therapist because I need support. My ob because I'm pregnant. The high risk ob because I'm high risk.

So I'm sorry 8 doctors. I respect your situation. I dislike your commentary.

Quincy- yes it was a very big surprise. My uc however has stayed the exact same since before I was pregnant. Same exact symptoms. I am very grateful it hasn't gotten worse but I was hopeful it would have helped.

No idea what will happen after birth. But it doesn't change the fact that my uc has stayed the same for 2 years. Same spot (confirmed via flex at 14 weeks pregnant), same symptoms. Having another baby only makes me want stability even more. Either by a new med or surgery. The way I have been living isn't cutting it anymore. Way too much effort for not being 100%.