Unsure about surgery, advice appreciated!

Hi all,

I was hoping this community could help me sort out the "are we ready for surgery" decision. Sorry that this is a long post.

I'm 27 years old, was diagnosed with UC in summer 2011 - originally just procto-sigmoiditis but I've progressed to pan-colitis, managed with colazal and then 6-MP and enemas/canasa/prednisone as needed for flares. Since diagnosis I don't think I've gone longer than about 6months without a flare.

I gave birth to my first child this past May, 2015. I started flaring in March (about month 7 of pregnancy) and this time the flare did not respond to steroids or Rowasa enemas. about a week after birth my disease went CRAZY, I have never been so sick in my life. 20-30+ bowel movements a day, no sleep because I was always running to the toilet, blood, mucus, became anemic and hypoalbuminemic, dropped all my baby weight plus more, intense intense pain, forced myself to eat only so I could keep breastfeeding (but I wasn't eating enough to even really support myself so after about 1.5 months I finally gave up breastfeeding which was so emotionally hard for me). We tried infliximab (5mg/kg then 10mg/kg) in June; I actually had two weeks in July in which I thought it was my miracle drug and I'd be fine, but then the symptoms came back and I was essentially at square one again. We've tried a couple more infusions since but I just had a colonoscopy this past Thursday which showed moderate-severe pan-colitis, so I have officially failed infliximab.

So here we are, it's been a 6-month flare, and I feel like I'm missing out on my little girl's life because what with the pain, the fatigue, and being toilet-bound I am pretty useless when it comes to her, even holding her and bouncing her is often too much for me. Three weeks ago I was so ready for surgery - I use to say I'd do anything to avoid surgery but with this flare it's changed to I'd do anything to feel well again! I want to get out of this fog, I want to be able to sleep and to think clearly again - to eat and to snuggle with my husband.

BUT now it seems like maybe I'm finally making some forward progress - I'm no longer bleeding and I am definitely not at my worst, but I'm still not functional (I can't sleep through the night so I'm still totally foggy and needing to nap in the daytime, I still have intense pain that comes and goes, two weeks I had two accidents and I've had many close calls since). Yesterday I had 10 BMs, today so far I've only had 3 (WOW!) but today I've had such pain that I've had to take multiple percocets and even with that I was in tears and then eventually became so exhausted I took a 4 hour nap. So I don't know if this is actually improvement or just symptom variability? And I'm STILL on 40mg prednisone (I've been on steroids for 5 months now and my GI is really uncomfortable with it) and I still have these symptoms and pancolitis on colonoscopy.

I met with a surgeon last week who thinks I should definitely go forward with surgery and I met with my GI a few days ago who agrees. My husband is also on board and I think that I am too - we would do a subtotal colectomy and ileostomy first and as long as I don't have too many symptoms from my rectal stump, we would take a multiple year hiatus before the next steps of the j-pouch so that I can finish having children without fertility worries. I LOVE the idea of never flaring again. I LOVE the idea of having a pregnancy, birth, and post-partum period with no UC worries. I LOVE the idea of breastfeeding my next child for as long as I want to! But all of our extended family (who are not medical people or have much experience with UC) are a mixture of aghast/scared/mad about the thought of surgery. Everyone has some idea of what I need to try first - try LDN (my GI is ok with this and I will be starting it next week), try this diet (I'm trying something now, essentially no wheat/lactose plus some supplements), try hypnosis.

My concern is even if I get this flare under control, I'm just going to flare again in the future and it's going to be just as bad as this one and I'm going to get the surgery at that point. Or I'm going to need emergency surgery one day. My husband and I both think I'd likely need to get my colon out at some point either from UC or due to dysplasia (colon cancer runs in my family). But at the same time is it silly to get the surgery if I'm not at my worst? Or what if the flare completely goes away before the surgery? If we proceed with surgery we would want to do it in early October (soon!) so that I can heal before my residency interviews but if I really wanted to I could delay for months and try these alternative treatments and even try vedolizumab.

Any thoughts? Thank you in advance for any and all advice and support - this seems like such a great community!

If I were in your place, if do the surgery.

You have a lot happening: new baby, new residency, hopefully another baby. Put that together with just one more flare, even a mild one, and your life becomes so difficult. In my experience, most flares last at least two months (best case scenario) which is a long time to put things on hold. And all that prednisone isn't great for you, despite being necessary during a flare.

It seems like most people who have surgery wish they'd done it sooner. I'd hate for you to be sick for more of your baby's first year, sick during residency, and sick during another pregnancy.

If you do surgery in October and things go normally, you'll be living a much more normal life within a month. If you don't have surgery, it'll take you at least that long just to get off the Pred and back to a more normal life but you could relapse at any time. And it could take much longer than a few months to get there.

It's a big decision but there's so much upside for you and not much downside if you think you'll need surgery one day anyway.

I'm sorry you're having such a hard time.

I am sorry you're going through this. It is the worst. I recently had the first step of j-pouch surgery and I can help you with any questions you may have. If your rectum is in bad shape, it will remain in bad shape, even without a colon. Mine has always been trouble for me and it's still trouble. I am not sure if I would want to go a year or two with it. I guess if I were planning a family, it is a sacrifice I could make. It hasn't stopped me from doing things and it's not hugely impacting my life but it's not the most comfortable. I pass stuff, and once in a while, it will feel urgent. I can ignore it and nothing will happen, no accident of any type and usually the feeling of needing to go will go away. When I do go, if I push, mucus will come out... Sometimes it feels incomplete and you want to keep pushing but there really isn't a reason to waste time sitting on the toilet.

As for living with the ostomy bag, it's a lot easier than living with UC. No worries about where the toilet is or accidents. I never had accidents with UC, I just didn't go far from a toilet. I wouldn't eat if I were going somewhere... that's really no way to live.

I tried entyvio without any response, but even before entyvio, I consulted a surgeon. I wanted to know I had an option if entyvio didn't work. medically it is usually the last option, and i hate to say it, but it doesn't seem like the success rate is very high from what I see. I gave it a try, and I recommend you do if you want to, but with a family history of CC and severe UC, and concerns about the future, it's possible surgery is a better option. Even if you get better, how long will it last, a month, a year? Whatever amount of time is never enough.

I can tell you I am looking forward to getting all the surgeries in the past. Gas + ostomy bag is bad. Another thing about the bag that i don't like is that I get nervous in the night. If I wake up, I will feel the pouch and sometimes I get up to empty, often because of air... It's annoying to have to get up, though I was getting up WAY more with UC (sounds like you are too). The crazy thing about UC is that you have good and bad days and sometimes I would have a few good days and swear I was getting into remission, then a few days later, things would be terrible again - I wasn't on prednisone - In my opinion you can't judge remission if you're on prednisone. Things should be rock solid after a week or two at 40mg. If not, you need to find something else that will get things headed in the right direction. Entyvio is supposed to work better when you're stable and maintaining vs starting in a severe flare up. I started it when I was stable and it didn't work for me regardless... I knew at a certain point that I would never allow myself to take another course of prednisone, when my flare up progressed, prednisone was my option (it always worked wonders for me), but I refused. that's when I scheduled surgery.

Did they check for c diff?

I was up and about pretty quickly after step one. 2 weeks after I drove myself to the doctor for follow up and walked a few blocks... It was hard, I was still extremely tired, but a few more weeks, I was hiking and going to the beach...

I vote for surgery for the OP. Don't let family or friends who know nothing about the disease or what you've been through change your mind. You, your husband, and both your surgeon and your GI know you and your situation much better than those outsiders do. Add to that the history of cancer in your family makes the decision a no brainer.

UC, I think you're right and your family is wrong. They have no idea what it means to have UC, and most people out there think it can be controlled easily with diet. The truth is, a minority of people can control with diet, and those diets tend to be quite restrictive.

You've bravely followed the program, and you deserve relief. It seems like if you opt to try other measures before surgery you should think of them as a way to delay surgery rather than to avoid it.

Good luck, and I hope everything works out for you.

garylouisville said...
I vote for surgery for the OP. Don't let family or friends who know nothing about the disease or what you've been through change your mind. You, your husband, and both your surgeon and your GI know you and your situation much better than those outsiders do. Add to that the history of cancer in your family makes the decision a no brainer.

I second what Gary wrote.

I would do surgery. I have spent most of my diagnosis terrified of surgery and would do anything to avoid it. After having a horrible flare this winter and spring surgery was discussed. I tried entyvio and simponi, got about 2 months of normal and I am back to super sick. I have surgery scheduled for 10/9. People are right, I wish I had done it sooner!!! Now I am ready and can't wait for 10/9 to get here. I want to be disease free!

One thing that helped me was watching some videos on YouTube. It helped me wrap my mind around what the stoma looked like and how people changed their bags and dressed. Once I saw women my own age dressing normal still, still having babies, and having great normal lives I knew what I wanted to do!

Hi, before you decide on surgery at this stage, could you tell us roughly what you eat and drink in the average week? You might have certain food triggers that are preventing you from sustaining remission, especially if steroids don't seem to be working as well as they ought to.

Thank you so very much for all of your advice and kind words!

liveinbalance, I hope you've gotten as much help from this thread as I have.

To answer some of the questions: yes I've been tested for c. diff (and a whole GI bacterial panel) - all negative. My diet had been a half bagel and cream cheese and/or ensure for breakfast, then mostly eggs, beans, baked chicken, rice, pretzels/cheezits for snacks. I was drinking a lot of milk because I was craving it, it would provide me good calories, and it helped calm my stomach when I took my prednisone, but I never noticed a bad reaction to the milk specifically (though who knows). I'm currently on a diet with no refined sugars, no wheat, no dairy, no corn and though I have been having less BMs a day for the past few days I'm still having intense intense pain and when I do have BMs they're just as watery as always. I'll give it some more time before I try to reintroduce milk products.

To those of you who are awaiting your surgeries, I wish you all the best and hope you have as easy a time as you possibly can while you wait. And I hope you have a smooth recovery!

We've decided to go forward with surgery. And I'm feeling really good about this decision! Hearing from everyone on this forum has definitely boosted my confidence that this is the right thing for me and my family. It's definitely bittersweet because man I never really thought I'd get to this point, but I am so excited to be done with this disease. No more flares! I think what makes this decision so rock solid for me now is knowing that even if I could get this particular flare under control eventually, I'm certain I would flare again during residency. And I just can't do this again. I can't live this life and I don't want my family to have to live with this version of me anymore.

Again, I am so thankful to each and every one of you for reaching out to me. Best wishes to everyone!

~S

Please keep us informed on your progress. Some of us have not been able to make the decision for surgery, and your progress would be helpful.

Dom353535 said...
Please keep us informed on your progress. Some of us have not been able to make the decision for surgery, and your progress would be helpful.

There are a lot of blogs on the subject. You can use google to find them. Also, you-tube has some great video blogs. Very informative. They helped me a lot when I was going thru it all.

Hey everyone I wanted to give an update: I had my surgery on September 30th and it was TOTALLY THE RIGHT DECISION!

I'm so lucky my surgeon was able to add me to his schedule so soon! I had a subtotal colectomy (we left my rectum in place for now) and end-ileostomy. The plan is to actually hang out like this for as many years as I want to while my husband and I finish having children (I'm concerned about the fertility problems associated with j-pouch surgeries and I don't love the idea of having to have c-section deliveries) and then we'll move forward with making my j-pouch. But if I end up with unruly proctitis or if I just change my mind I can always get my j-pouch earlier.

It is AMAZING to not feel so utterly utterly sick. I feel like I've had major surgery, sure, but I don't feel like the shell of the person I once was - in fact I feel reborn! My husband and I are both blown away by the terrible quality of life that we were accepting as our "normal" before surgery - you don't realize how far from normal you are until you start to get your life back.

I'm only a week out from surgery so I still have a LOT of healing to do and I am beyond excited to really start feeling like my old self again. But even now, when I'm exhausted, not used to my stoma, and still on a restricted diet, I am CONFIDENT that this was the right move for me - and things are only going to get so much better! I'm so relieved that I will never flare again - not during residency, not during my next pregnancy, never. And I admit it - I don't love my stoma and I don't love having to deal with wearing a bag of poo, but I would rather feel healthy and temporarily wear a bag of poo than be sick as a dog and crap my brains out all day long (bonus: my hemorrhoids are smaller already!!).

Thank you so very much to everyone who helped me come to this decision. And good luck to everyone on their own journey. I wish you all the best!

Happy to hear you're doing well. One week out was a tough time for me. You have to get used to the pouch and you're tired and weak. In a few weeks it's all going to be a breeze. After step 2, you're back in the same shape you are after step 1. I had mine recently and I am wiped out again. I hate the loop ileostomy so I wouldn't rush to get one, but of course, it is necessary to get to a j-pouch. After a while with the end ileo, it really becomes second nature. The loop is a constant problem for me but it's temporary. I am the same way you are, I don't love going through all of this, but I can't see living my life worried about the next flare up forever. This is going to give you the ability to spend more time with your children, to be the mom who goes on school trips and participates in activities... I couldn't do that with UC unless I was in remission and out of the 8 years I suffered, I was probably in remission less than half of the time if you really break it down. I don't have children but it was really starting to impact my ability to get to work and my social life. I felt very trapped and very negative about the future. Get lots of rest and let your husband pamper you :)