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Posted 5/21/2018 1:29 AM (GMT 0)
Hi everyone,
So I am here because I have hit my low point with uc. To this point, I have tried so so many medications with no luck over this current 2 year flare. I have tried asacol, balsalazide, humira, azathioprine, entyvio, xeljanz, a number of different rectal meds, Prednisone, and currently trying remicade. No luck with any. I can't get below 30mgs on Prednisone and today I had an accident while trying to make it to the bathroom at my new job. It's so embarrassing and I just want to walk out that door and go home, but that is not an option. I've been so against the idea of surgery throughout this whole process but over the last month I have been reading up on it so as to prepare myself for the scenario in which it becomes my best option... I think I have finally arrived at that situation.
It still scares the hell out of me, and I continuously tell myself it's only 20-25 cm of inflammation. You'll figure out how to bring it down eventually. Nope. I have to come to the realization that that is not going to happen. Surgery truly does scare me, but life has to be better than this right? I'm going to email my doc and ask what the next steps are in talking to a surgeon and getting prepared for it and making sure I'm a proper candidate.
Do you all agree this would be the logical next step for this disease? I had my four year anniversary of being diagnosed a few weeks ago. Can't believe it's been that long. Is this the right decision? Is there light at the end of the tunnel?
Thanks for reading if you've gotten this far. You guys are all awesome.
Posted 5/21/2018 2:10 AM (GMT 0)
there are probably a bunch more things you could try, but ultimately, you have to decide if it's worth it or not to continue the search for the holy grail that may in fact never reveal itself -

ask a lot of folks who have had surgery, and most that dealt with the same scenario you have would say " i wish i had done it sooner" -

imo, surgery for you seems to be a logical and reasonable solution to your UC troubles -
Posted 5/21/2018 3:18 AM (GMT 0)
Surgery is definitely a big decision. For me it was all about my quality of life. After failing the meds, diets, and everything else, I decided to get my life back. I found the best surgeon in the region, and took the plunge. My life has gotten a thousand times better. It’s only been 3 months, but I’m back to doing most the stuff I did before I had UC. It feels so good to run again, to go to work and not worry about crapping my pants, go out to dinner and with my wife and order pretty much anything I want. It’s true you have to adjust to life with an ostomy, but mine truly saved my life. So far I have only thought about it positively. I did spent a ton of time educating myself before surgery. I feel like I could train people how to change the bags, I watched so many videos on how to do it.

Whatever you decide, keep your chin up, life will get better. You’ll either find a combo of medications that put you in remission or you may get surgery and put UC behind you once and for all!
Posted 5/21/2018 12:50 PM (GMT 0)
If you've failed at least two biologic medications of different classes then it is perfectly reasonable to think seriously about a surgery (you've tried entyvio, xeljanz, and now remicade). As the medical literature says that the odds are you are a non-responder to all UC treatments from that point forward. Are there exceptions to the rule, where somebody did eventually respond? Sure, but the odds are much, much lower.

You're on 30-mgs of pred, and have been fighting UC for 4-years. Pred can do irreversible damage to your body when used long-term (osteoporosis, glaucoma, type ii diabetes). Not sure your cumulative time on pred, but if you cannot get off of it without flaring then surgery seems like a good idea to look into further.

I'd recommend arranging a surgery consultation, a no-obligation question and answer session with a colorectal surgeon. You get to ask him/her all of the things that concern you about a surgery, and you'll get answers by an expert. Create a list of things you're curious about and would need to know prior to undergoing a surgery, bring it with you, and check off each question as you ask them.

Everyone who has gone through surgery was initially scared about the prospect and I think that is only human-nature. As it's a big plumbing change, and the procedure has risks, recovery time, etc. Not something to be taken lightly. You just do your research, find a good colorectal surgeon who has done many, regular UC surgeries.

What a UC surgery can give you back is a quality of life and predictability. You can hold bms for 1/2 an hour, an hour, or hours and go when it is convenient to you (something never ending flares cannot give you). A good outcome is 4-6 bms a day, evenly spaced out within a day, without urgency or pain. Often you go while you pee, it's quick and uneventful. How many times a day do you currently pee and how often? It is likely similar intervals.
Posted 5/21/2018 2:20 PM (GMT 0)
Given the history you lay out, surgery is the next step in established procedures. For myself, I woudl try some type of DIY FMT as a last effort before surgery.

good luck
Posted 5/21/2018 3:47 PM (GMT 0)
I had surgery, I wouldn't recommend it to everyone but in your case, it would definitely be worth a consultation.

After I had my colon removed I woke up and just felt so much better, I was being poisoned from the inside with my diseased colon.

Everyone is worried about pouchitis but speaking from my own experience with Chronic Pouchitis (I treat it) and it is not nearly as bad as when I had UC flares. I live a very normal life, but that wasn't the case when I had UC.

The thing about surgery is that you have to judge your current QOL vs the surgery. Going for surgery wasn't as difficult as I thought that it would be. I expected it to be really difficult but even with complications, it wasn't that bad.
Posted 5/21/2018 5:16 PM (GMT 0)
Quality of life....sounds like a most reasonable next step.

q
Posted 5/21/2018 11:33 PM (GMT 0)
I think it all depends on you. If you want your life back, and you want off the steroids, you may have no other option. I was really against surgery, and the closer I came to "needing" it, the more I wanted to fight against it. it's hard to talk about surgery here, sometimes you will get a lot of people who say "try this" or "stop eating gluten", but the reality is, in some severe cases, there really isn't much of an option besides surgery, clinical trials, lots of steroids, or be miserable and stay near a toilet for years on end. I was doing option #4 toward the end, watching life pass me by, and I decided after seeing months turn into years, that it was time for me to figure out a long-term solution. I didn't want to do alternatives and lose anymore time, or clinical trials.. it started to feel like each treatment I tried took another year of my life away. I would have loved to remain free of scars, and be healthy like I was pre-UC, but it wasn't in the cards. At least after surgery, and pred, I did finally get my petite figure back. I was chubby a large part of my 30s due to pred and UC drugs. I don't know how it's possible, but I would need larger sizes compared to preUC. Now I wear all my normal preUC sizes again. That, for me, has been a huge positive. I really hated how I looked on the prednisone. I lost a ton of confidence and felt horrible about myself. It was what really pushed me over the edge to have surgery. I knew If I had to live like that, I wouldn't be happy, even if my UC was in remission. I needed an end to pred. Go on a consult and see how you feel. That's really the fist step and it doesn't mean you have to decide. You can just get information. I recommend consulting a couple surgeons before deciding anyway, so see one for now, and that will help you decide if you want to see another. Sometimes they have longish waits to get scheduled. The wait between deciding and getting surgery for me was really tough. I had committed and I wanted my life back, but I had to wait 2 months to get a date... It's good to know you have someone you feel confident about when/if you need to get moving on the process. Sometimes it can become emergency if we wait to long. Better to do it sooner, hope for 2 steps and laparoscopic.
Posted 5/22/2018 1:38 AM (GMT 0)
If nothing is working....seriously consider it. I was in your same predicament when I completely and utterly had enough. I opted for j pouch surgery. BEST THING I EVER DID. It is not easy and you have to have patience and a positive attitude but in the end it’s worth every minute of the hardship going through it.

Go for a surgery consult...or two. Talk to people who have been through it. Don’t be afraid. (I know easier said than done!) Best of luck!
Posted 5/22/2018 3:06 AM (GMT 0)
Well wow, thank you for all of the responses. It is oddly reassuring to hear some of your stories and your helpful suggestions. I am going forward with getting a consultation set up, and I really like the idea of writing all of my questions down to go in as prepared as I can. I also like the idea of meeting with multiple surgeons so as to find the right one for me. You have all given me a great amount of help in getting prepared for this. It seems to come down to a quality of life debate amongt myself... I will begin with the positive attitude now and truly believe that life will be better on the other side.
Thanks again, and any more suggestions before going into the consult would be appreciated as well as any other suggestions how to mentally prepare for surgery as I understand that can often be the most difficult hurdle.
Posted 5/22/2018 3:18 AM (GMT 0)
Where do you live? Maybe someone can give you some recommendations. I don’t know if you’ve ever had any interactions with a surgeon before but they can be a little weird and off putting. Just remember that you’re considering the surgeon for the time that you are on the operating table and not their bedside manner.

I leaned on my GI for guidence when choosing a surgeon, he had a lot more experience dealing with this stuff than I had. When he told me who he’d use for his family or himself that was good enough for me. I’ve been with the same GI for 13 years so I really do trust his advice and opinion.
Posted 5/22/2018 4:08 AM (GMT 0)
Hey, I don't know why we are talking about Oestomy bags here. We all have UC here. What they'd do is probably make a J-pouch with your small intestine. There would be no bag except for maybe during a healing period. Otherwise from what I understand you'd be having 3-6 softish BM per day.
Posted 5/22/2018 4:20 AM (GMT 0)
Your situation sounds very similar to mine. I've had UC going on 4 years and it's been a nonstop flare. I've tried 11 prescription medications, supplements, accupunture.. even CBD oil. Nothing has worked.
My GI suggested surgery about 2.5 years ago and I was totally against it. But after having multiple bathroom accidents over the years and just dealing with pain and uncertainty of this disease.. I feel like I'm close to deciding on surgery. I have an appt with a surgeon for a consult in a few weeks. I'm trying to think positively, think about the long game.. and know that going through a tough surgery will be worth it if i can have a better quality of life in the end.
Good luck.
Posted 5/22/2018 11:21 PM (GMT 0)
I was left with no choice but to get surgery. I didn't even have a quality of life to weigh my options I was dying. I went with the surgeries. Amazing choice for me even dealing with the bags I felt alive again. I just had my takedown surgery and it's not a perfect life but my god is it better than anything I've ever dealt with in uc. If you're anywhere near Philadelphia I HIGHLY RECOMMEND Dr. John Marks at Lankenau Hospital. The luckiest thing that ever happened was being referred to him through a random interaction. I poop about 3-5 times a day which sounds like alot compared to a normal person but it's like a godsend to only go that much today. But surgery is all depended on your quality of life. Like everyone else said once you wake up with no colon and you were that sick prior it's like an immediate relief. Good luck but def consult with as many ppl as possible. If you have questions about any of us JPouchers just ask
Posted 5/23/2018 12:33 AM (GMT 0)
Thanks guys. I am in Colorado currently, does anyone have any recommendations around this area? 3-5 does with control sounds like a far off dream I would love to be a reality. Well what has become perhaps my biggest concern as a male is the potential for impotence? I've come across that as a possibility and that alone is nerve racking. I'm not sure of the percentages or likelihood but still worrisome nonetheless.
Posted 5/23/2018 12:45 AM (GMT 0)
And colitis research - please keep me updated on here as you go through the process as well. It's nice (although crappy) having someone go through the exact same thing in the same timeline. Of course, that is as long as you don't mind giving updates.
Posted 5/23/2018 12:36 PM (GMT 0)

Ihatepooping said...
Well what has become perhaps my biggest concern as a male is the potential for impotence? I've come across that as a possibility and that alone is nerve racking. I'm not sure of the percentages or likelihood but still worrisome nonetheless.

I did some digging and I am seeing the odds of permanent impotence in men being about 2% as a result of large intestinal surgery, according to multiple sources. The odds of temporary impotence are higher, but do resolve as you heal. Certainly discuss this with your surgeon, as well as other complications that could occur. Certainly low risk but troubling. I read in another source that patients over 50 are the ones most likely to have ED following the surgery (if you're a younger guy then the odds are much lower).

https://link.springer.com said...
Results and conclusions:  In the best hands, permanent impotence occurs in less than 2% of patients following restorative proctocolectomy and at a similarly low rate after proctocolectomy and ileostomy. Isolated ejaculatory dysfunction is also numerically a minor problem post operation for benign disease. Patient age is the most important predictor of SD after surgery for rectal cancer. Anatomical dissection of the pelvis with preservation of the named autonomic fibres results in a low and predictable rate of sexual morbidity. Surgeons could profitably spend more time with their patients discussing the possible effects of surgery on sexual function.

Source: [url]https://link.springer.com/article/10.1245/ASO.2006.05.045[url]

Posted 5/24/2018 1:20 AM (GMT 0)
Well once again iPoop, thanks for doing some fantastic research. Although there's still that chance, I can get my head around 2% and feel comfortable with that. It's about time my somewhat young age works in my favor (nearing 30).
Posted 5/27/2018 11:59 PM (GMT 0)
I thought of another question to ask you all. My inflammation has always seemed to go from about 20-25 cm Max in my colon. Is it possible/practical to only remove part of the colon? Or would it be more or less pointless considering you already have UC and are always at risk for it spreading farther throughout the colon?
Posted 5/28/2018 1:07 AM (GMT 0)
I have heard of a few people saying they've been offered that option - but I can't imagine a reputable surgeon giving a thumbs-up to doing it. I've also seen people do temp diversion to give the colon time to heal, but in reality, as much as the colon seems quite essential when you have one, you realize it's not when you don't.

Sure, it would be great to go once a day and have everything consolidated, but that's pretty much the only difference between living with a colon and without. Instead of having one compacted stool a day, you go 5-8x and it's a variety of consistencies. You do not need drugs, or monitoring, no more colon cancer risk ever...

I went from barely eating and going 20x, with blood, anemia, tons of drugs, blood draws, enemas, expenses, doctors appointments, career suffering, making excuses, unable to travel, to going 6x, give or take, a day. I am in and out of the bathroom in moments. I spend very little time worrying about bathrooms, less than some of the colon-ed people I know.

I can't see going through a surgery to divert, or to eliminate the part, only to end up with the same situation in the future. In the case of Crohn's, or people where the diagnosis is indeterminate, a resection make sense, but for UC, surgery is an actual long-term solution for the large majority of non-responders.
Posted 5/28/2018 1:58 AM (GMT 0)
Ah yes that makes total sense nssg. Thank you for explaining that to me.
In have come up with another question, if you don't mind, after reading your banner there. Is 2/3 months in between steps of the surgery about the usual? I currently work in an office setting and am curious as to how often I should expect to ask off for or when exscyid be as to return? I'm sure it's unique to each individual but that is another stessor unforgotten to bring up.
Posted 5/28/2018 3:06 AM (GMT 0)
Surgery is a step that you really have to think about. I went from being ulcerated 20-25 cm to my whole colon ulcerated in just 5 months. What got me through the surgery was I knew I tried everything and trust me I fought this disease tooth and nail.
It got to a point where I could not drive out of my subdivision or walk down the street without having an accident. That is no way for anyone to live.
Now I can walk a few Km without thinking of a bathroom, travel in a car without looking for a bathroom at every exit. I will not lie the surgeries were pretty invasive and I can only pray I never have to go through majors ones like the first two, but at the end of the day I have my life back and that is worth all the pain and suffering for a few operations.

Do your research first go to a few surgeons to find one that you are comfortable with.
Good luck
Posted 5/28/2018 2:54 PM (GMT 0)

Ihatepooping said...
Ah yes that makes total sense nssg. Thank you for explaining that to me.
In have come up with another question, if you don't mind, after reading your banner there. Is 2/3 months in between steps of the surgery about the usual? I currently work in an office setting and am curious as to how often I should expect to ask off for or when exscyid be as to return? I'm sure it's unique to each individual but that is another stessor unforgotten to bring up.

It's hard to say how much time it will take you to heal. I would however ask your work if you can start by working from home, that would enable you to get back working faster. I worked from home a week after my surgeries. I work a job that doesn't require me to be available in person too often. It relieved a lot of stress for me to know that I could get back to work. I do not have a family for financial support, without full income, I can't manage financially. I used PTO for surgery, no disability. I had 3 steps, but people who have 2 can probably get through it with less time off. For 2 step procedures, there is usually an 8 week wait. For 3 steps, it's 12 weeks, then 8 weeks. The last step is just a reconnection, it's a quick surgery. Mine was about an hour and I was out of the hospital in a couple days. After that, there was a lot of toilet trips, but nothing too unmanageable.
Posted 5/28/2018 10:56 PM (GMT 0)
8 weeks today since surgery#2.Little tougher getting stronger then first one.We only have half of upper intestine working for us until surgery 3 so less intestine to absorb all the goodies we need to function.Can be tough getting through the days if not eating correctly[bananas,potatoes etc etc]. No matter what i go thru now its better then the monster that controlled every thought in my life.Im very happy i had surgery.Mine was not an emergency,my colon was just in bad shape,severly inflammed and not getting better.Good luck-be strong
Posted 5/30/2018 12:48 AM (GMT 0)
Thanks for sharing three time champ. I'm in a similar situation to you, no emergency just not seeing any real continuous improvement. Just seem to stay exactly where I'm at now matter what medications I throw at it. I just want that freedom back.
And thank you nssg, getting back to work Jena major stressor in thinking about this donuts awesome tonhear you were able to make your way back pretty quickly.
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