Don't know if I should go for surgery or not..?

Hi Lauren! Sorry to hear about your struggles. Deciding to have surgery is a very individual and personal choice...but there are lots of great folks here to try and help you sort it all out. Don't ever feel like it is about being "sick enough" though. It's a question of quality of life, and how you want to live your life.

I was diagnosed with mild Ulcerative Colitis around June of 2012. Meds worked very well for me for 5 or 6 months, and then I started to flare in a bad way. Things went downhill very fast! Over the course of a little over 3 months I got sicker every day....I was NEVER hungry, had to force myself to eat just about anything. I only slept 1-2 hours a day...every day...since I was up so much going to the bathroom. I was going 15-30 times a day...had LOTS of pain, nausea, some vomiting, diarrhea, bleeding, major urgency...all that stuff. I lost about 45 pounds (putting me at 5'9" weighing 95 pounds at surgery time). Meds did NOTHING for me....prednisone, Rowasa, Remicade...didn't put a dent in my condition...diet changes didn't help either. Each scope was worse than the last. I barely had the energy to function...I wore diapers all the time. My blood work was a mess, I had no muscle mass....I was dying. When my GI said, "I'm sorry...but I really think you should think about surgery"...I was THRILLED! I had been researching options for weeks, because I just had a feeling that was how things would turn out for me.

For many reasons, I chose to go with a permanent end ileostomy, never even considering the J pouch option. I have been 100% happy with and sure of my choice every moment since! I certainly don't have any regrets.

Being that you have indeterminate colitis, your situation may be a bit different. Even with a colon removal, I'd think problems with your small intestines are still possible. There are probably others here who could give you more insight on that end of things. If you have any more questions I might could help with though, please don't hesitate to ask.

It's a quality of life/risk question you need to ask yourself. How would your life with an ileo/jpouch compare with your life right now with your UC. The deciding factor for me was that my quality of life was not what I wanted. UC was murdering me. It was all I could do to work 24 hours a week.

The final straw was when I had an accident at work when on 40 megs Prednisone and a full dose of Remicade. The only thing that ever worked was Prednisone and I wasn't willing to experiment any more as I would just have to stay on Prednison longer. I also thought that any drug coming out be messing with your immune system and not be heavily tested. I wasn't willing to be on those anymore.

I've had a rough road, but even now I'm sitting better than I was before my colectomy.

Hi Lauren

I definitely feel for you as surgery is a daunting thought, and there can definitely be the fear of regret...that said it's hard to make any decisions when "what if's" flood your thoughts.

OK, here is my take on surgery. Having a chronic illness like Chron's or UC totally takes away our ability to realise what a "normal" life is. Our baseline is forever changed. I had my colon out when I was 15, I'm now almost 34, bc of UC. At that time in the mid 1990s there weren't all the drugs out there that there are now, and many of the drugs that were out there could not be used in pediatric cases because of the unknown long term effects. So, I tried everything I could.

At one point my GI said that we have exhausted all options, and I had been in a constant flare for four years. FOUR YEARS of zero relief at a time when I should have been thriving and developing. So, he sent me to a surgeon and it was clear that it was time to have surgery.

Was I 100% ready? No. Did I have any other options? No.

GI doctors are great in that they know what meds are coming down the pipeline, but to think that there will be a cure, or that meds that are in process of coming down the pipeline will be ready for use with long term side effects known.....well, that's just not going to happen at this stage.

In my opinion, a colorectal surgery consult is a vital part of your treatment plan. Surgeons have a different way of thinking, quite often taking into account quality of life aspects, and as well, how beneficial surgery will be to the patient. For someone who is extremely ill, surgery may seem like a no brainer, however it can make for a complicated surgery and very long and difficult recovery. Would it be worth it? Yes, I think so.

For someone who feels they are moderately ill....tried all the drugs, but doesn't think they have it that bad....surgery can be scary bc it is not viewed as life saving. However, there will always be benefit to removing a toxic, diseased colon. Surgical complications and recovery times are lessened, and there is a great chance of success. Quality of life goes up, and most patients totally come off all GI meds. Sometimes you don't realise how sick you are until you aren't in that horrible UC or Chron's cycle anymore.

So, my thoughts are that maybe it wouldn't be so bad to go for a surgery consult as a means of getting more informed to the different procedures out there. Maybe meet with people who have gone through the surgery to discuss any details or questions you may have (most hospitals have monthly support meetings you could pop in to one). Would you consider calling a WOCN (wound, ostomy, continence nurse) to chat for a bit on what life could be like if you went the surgery route?

I know my surgeon feels that surgery should not be a last ditch effort, that it is a way to come off dangerous meds, many with long term effects that are unknown, and regain strength and quality of life.

Being a female, there will be considerations around pregnancy and issues with scarring of the fallopian tubes. But on the other side you need to also consider dangerous birth defects of some of the meds used for IBD.

Lots to think about for sure, we are all here to support you. Big hugs to you :)

I will echo everyone's thoughts - this is a VERY personal decision. Only you know if you're ready for it. But being on prednisone definitely will temper your feelings - even if it provides you relief, you cannot stay on it forever. The side effects can be devastating and permanent. I am only 42 and have severe osteoporosis which has already led to several horrible bone breaks from minor accidents. I gained a lot of weight from 3 solid years of steroids, had tooth/jaw issues, chronic infections, a generally weakened system, worsening eyesight, night sweats, insomnia, rage, etc. It's effective, but it's not meant for permanent use. So if the other meds have failed and that's all that's keeping you from a severe flare, you are reaching a point where you will run out of options. For me, even on 40mg of pred, all of the other drugs failed. I managed for more than a decade, but couldn't take it any more. I was wearing a diaper to work and having accidents all the time. I was in and out of the hospital. So it was definitely QOL, but also knowing that I couldn't stay on pred, and it wasn't even getting me into remission. There's a lot to consider. I highly recommend making an appt to see a skilled and experienced colorectal surgeon (one who has done a LOT of j pouches) and finding out about your options, both for a permanent ileostomy and a j pouch. At least then you can be informed and know what your options are, and whether you are even a good candidate for a j pouch. And if/when you're ready, you will have a surgeon lined up and can feel comfortable with your decision. Best of luck.

Good luck. I know this is a hard decision.

@ LaurenTay I had my jpouch removed in Oct after over 18 years with it. I'm almost 34 years old and over the past three years had a LOT of issues emptying my pouch - we call it incomplete emptying. This kept stool in my pouch, and this led to chronic pouchitis. I was on cipro and flagyl for years. Everytime I tried to come off the pouchitis was out of control. Because of straining I developing fissues, inflammation and my anal pain and spasms were horrible. What happened was that over time my pouch started to "fall" - just like a bladder or uterus can - and it was kind of dropping down on itself preventing stool from emptying properly. I had no life, and was in so much pain and discomfort I couldn't take it anymore.

So, my choices were to catheterize myself every time I needed to poo, which I didn't want because it wasn't going to solve the problem, and long term I didn't think that was something I could do as I got older in life.

I had the temp loop ileo with my 2 step jpouch and getting a perm end ileo was on my mind. In numerous discussions with my surgeon, decided this was the best way for me to truly get my life back, close this chapter and move on. I could travel and not worry about anything. I was excited for the possibilities.

But remember, MANY MANY people are very happy with their jpouch, so please don't let my journey weigh on your decision making.

One thing that I cannot stress enough is the importance of family planning in your surgeries. It is a lot easier to get pregnant with an ileostomy than with a jpouch, and many surgeons now recommend that for women in their childbearing years, or who have yet to have children but want them in the future, they go ahead and get the ileo, but wait until they are done having children to undergo the pelvic dissection and jpouch creation.

The pelvic dissection can affect the reproductive organs, and the stats are very high on fallopian tubes being blocked with scar tissue, thus preventing proper travel from the ovary into the uterus for fertilization. IVF becomes a likelihood.

I found out early on in 2013 that I would not be a candidate for IVF because of numerous issues caused by my pelvic dissection, in fact one of my fallopian tubes was found completely adhered to my jpouch when they went in to remove it. Both of my tubes are blocked with adhesions, and my egg supply is almost zero.

Early childhood long term use of meds? I was ten when I was diagnosed with UC and 15 when I had surgery. That was almost 20 years ago and no one really knew the issues with these nasty meds and the pelvic dissection back then. But, with all that being said, and as heartbroken as I am, and tired after fertilty appointments, I have my life and my health.

Feel free to ask any questions, and I'm very happy to hear that you have already had surgery consults. If you do go perm ileo I can tell you that I have no regrets and am SO HAPPY! Four months post op and I feel better and more energetic and confident than I have in the past four years!!

Hi Lauren,
I agree its a hard decision to make.
I was diagnosed with crohns in 2003 and spent the first year on steroids. I then was given an infliximab infusion that lasted a year. Then another that kept me good for 18 months. Then it started to go downhill.
It would take me hours to get ready for work with constant bathroom visits. But like you I can't say I felt as sick as everyone told me I was.
Since that first infusion I have been on constant biologics and immunosuppressive drugs and the docs got more concerned as the years went on.
I made every excuse to myself why I didn't need surgery. I was even referred to the surgeons about 5 yrs ago and still said no.
I made the decision about a year ago that enough was enough - no social life, no hair because of the long term chronic inflammation, no quality of life at all really.
After making the decision on surgery it still took another 7 months for me to reason it out and get my head round it. To be honest I was still doing that when I was taken to theatre!
I'm now 7 months post op following a full proctocolectomy. I'm off all meds and I'm great. My recovery was boringly uneventful! I wish i had had it done years ago! I wasn't given the option of a j pouch because of crohns but I don't think I would have had one anyway.

My stoma is great and it takes about 3-4 mins to change the bag each day. Put that up against 2-3hours in and out of the bathroom before surgery and it no contest.
I'm in my 50's so quite a bit older than you but I do everything I did before and more! I walk, swim, go out with friends and family and life couldn't be better.
You will know when the time is right for you. I talked to anyone and everyone about having/not having surgery in that 7 months but they stuck with me and didnt complain.
Anyway i hope this helps you and good luck with whatever you decide.

Hi Lauren,

Yes, the infertility rate after jpouch is high, but fertility is hardly affected after surgery for an ostomy. Are you able to talk with your parents about this, do you have close friends or family to talk to? It's a lot to take in and I want to make sure you have people close to you to give you a big hug because you are going through a lot.

For me, it is WAY easier to go about my day with my ostomy, as compared to UC or my jpouch. When my jpouch worked well, it was good. But when it was bad, it was horrible. But again, everyone has a different experience with the jpouch.

I had my first ostomy when I was 15/16 years old. I was in grade ten in highschool. I could wear whatever clothes I wanted to. I had my first kiss when I had my ostomy. I had my first boyfriend when I had my ostomy. No one could see it, even when it was super full and I thought everyone was staring - they weren't staring and the definitely couldn't see it. I was just paranoid at first.

It doesn't smell. I can hardly tell I'm wearing one, it's like wearing a watch or a pair of earrings. At first you know you are wearing the watch, but then you just forget about it.
I still wear cute clothes, leggings trendy tops, etc. I went to a wedding and wore a cute black dress with booties and no one could tell.

I can't wait to go swimming (once my incision heals I'll be in a pool). I did buy a couple of cute tankinis, but I know people with ostomies that wear bikinis and own it.

There are a few great manufacturers of ostomy accessories (I hate the word appliance!) and they each have something for everyone. Adhesives are a bit different, wafers are different sizes, bags may be a bit different, but everyone ends up finding whatever works for them.

I've never had a leak. Never Ever. But, if it happens, I'll deal with it. I've crapped my pants before with my jpouch so a leak would be a "been there, done that" situation for me. I'll laugh it off.

You can't hear poo fall into the bag, and I can BARELY hear if I pass gas. It just kinda sounds like a tummy rumble. No one will know what's going on but you.

As for how much time I take in the bathroom - it takes like two minutes to empty my bag and clean the tail. I get 6 days out of my wafer, and I change my bag every three days. After four months of having an ostomy, it takes me 20 minutes from start to finish (grabbing supplies to cleaning up afterwards) to put on a new wafer and bag. That's it. 20 minutes every six days. Plus 20 seconds to snap on a new pouch halfway through the week.

Now that I'm older, I'm really looking for a great man to fall in love with. I consider my stoma to have "jerk radar". Hehehe. If a guy doesn't like Squirtz (I've name my stoma Squirtz) then he's not good enough for me anyway. Yes, I'm a package deal now. I'll be able to tell a lot quicker if someone is a good guy or a jerk. You have to find "pros" wherever you can.

The good news is, no matter your decision you have a whole group of online friends who will be here to support you, cheerlead you and celebrate your victories!

Hugs xoxo

Post Edited (PoucherInTO) : 2/13/2014 10:37:31 PM (GMT-7)

I dunno, I just would hope for the best from surgery, but I wouldn't expect it. Me, I wish I had gone into my surgery with considerably lowed expectations, then I wouldn't have felt so darn disappointed when surgery wasn't a panacea and I wasn't the same person that I was pre-Crohn's.

I still struggle with having an ileostomy. Some people obviously have no problems adapting, but I did, and I don't think I'll ever fully like having one. I tolerate it. It's a part of my life that I don't really want, but I look after it and change the bag because I don't really have any other choice now.

Maybe I'm wrong to be this pessimistic. I'm not trying to scare anyone away from surgery. It's just that people make so many promises for it, which they can't guarantee. Chances are you will feel a lot better, but having an ileostomy is still a compromise. Well for me it is. I don't find it nearly as easy to look after as people say it is: it requires rather a lot of maintenance in some ways. Well, I think it does.

Edit: Never mind. Put this post down to being in a bad mood... :-/

Post Edited (NiceCupOfTea) : 2/14/2014 11:38:10 AM (GMT-7)

Thank you so much everyone for all the information! And thank you so much for being so supportive for me and for everyone else here as well! I know I really appreciate hearing everyone's stories and how you are doing today! Its good to hear that for the most part, you all have positive experiences with the ostomy and are very happy with your lives now compared to before. I hope no matter what I decide, that I can look back without regrets.
I hope you all are doing well

I'd the same decisions to make a little over a year ago. I was diagnosed with colitis and then as the years went on, I tried all available drugs including the vedolizamab trial which worked for a while, then I developed a rash on my face, so had to stop, then I tried remicade infusions and they worked at first, then I needed more, more frequently. The colitis spread into pan colitis and a whole heaps of polyps....I was tired and could barely hold a job down, and so the decision had to be made. I didn't want surgery, but knew I was really had to do something before this illness killed me. I went in for jpouch surgery and unfortunately for me (rare circumstances) one couldn't be created, so came out of theatre with a permanent ileostomy. Due to complications, I spent a month in hospital...but i made the right decision. Life saving surgery has given me my quality of life back, I function like a regular person, I'm studying full time, I can work, I have energy to do whatever it is I like ..and I don't spend my life in bathrooms, or tired, or bleeding....I hated the thought of living with an ileostomy, there was no way in this world I was going to be able to deal with it ...it's strange and hard to describe..but what I can say...is ...I'm alive, I get a second chance at life and can honestly say..it's really ok....there is a life after colitis ...really there is.....