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10 replies

Way forward, need some advice

S SalmakMember
Hi guys,

First time poster here. I've been reading the posts on this forum frequently recently, I've found it very helpful hearing about people's experiences first hand.

I'm 25 and have had UC for a little over 10 years. Up until approximately 36 months ago I've had resonable control of my disease using mesalazine and imuran predomintately. For the past 18 or so months my disease seems to have taken a turn for the worse. I'm unable to get ontop of my symptoms and am reliant on pred to get my through my working day/week/life in general. Currently taking 25mg daily however have been up to 50mg recently. I have tried methotrexate recently to no avail.

I have recently had a scope and it has found low/mild grade dysplasia. My doctor is obviously concerned by this however has started to me that this instelf does not require surgery (at this stage), however the fact that I don't have any other long term treatment options means I should be looking into my options.

Its obviously a very big decision and to be perfectly honest I'm terrified by it all. I know for certain that something needs to change, i'm very sick and tied of feeling sick as I'm sure you can all relate to. Currently I have 3/4 unpredicatable loose bms a day. Do people think my quality of life (in terms of wellness, ability to be away from a bowl etc) will vastly improve with a J?

The biggest thing for me is the freedom to get through my day largely interrupted by needing the bathroom. The unpredicability of this disease honestly has terrified me at time, for instance in meetings, public transport etc. Do many people here work office jobs where they dont have access to a bathroom for peroids of time - will I be able to continue in my work?

In addition, being a young male I enjoy eating/drinking out. I understand life without a colon doesn't involve much alcohol intake, will my days enjoying a few bevvys with the lads at the footy be over?

I currently find that with my disease i feel sick/upset in the stomach on occasion. Will surgery solve these issues? I understand there is a fairly bumpy road but I am very much focused on the end result currently to weight up what my options are.

Thanks for your time, I'm sure I'll have more questions soon.
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MH mad hatterMember
I’m sure you Dr has also looked at other medications such as remicade and or Humara and they now feel that a J pouch is a good option. If this is the case then don't look at it as an end but rather as a beginning of getting your life back on track. The long term recovery will enable you to do the things you enjoy with a little learning curve that ensures you have quality of life as well.
Scott FScott FMember
Everybody's experience is different. For me the J-pouch gave me my life back. Traveling for work was terrifying prior to the surgery, and now it's no worse than the airlines make it. Expectations do have to be realistic, though. You used the word "uninterrupted," and many of us do need to use the toilet during the work day. The huge difference for most is that the urgency is gone - I can stay through the end of the meeting, get into traffic, go scuba diving, or deal with whatever life throws at me without much anxiety. Not all of us get off of meds completely. Essentially none of us will get colon cancer.

Many folks tolerate drinking just fine with a J Pouch, but you won't know what foods and drink work best for you in advance. Since the colon isn't there to absorb water, you would need to pay more attention to staying hydrated.
P PluotMember
If your priority is to get through the day without visiting a bathroom at all, maybe you'd like to consider a permanent ileostomy. I have an end ileo now (the kind you would get if you have a permanent ostomy) and if I time my meals appropriately I can get through the entire workday without needing to empty it. As a woman though my bladder requires I visit the restroom anyway Smiler

Everyone is different in their tolerance of alcohol. I could only have a drink or two per night before, and I still have that limitation. My hangovers seem to be a bit more gnarly now if I don't remember to aggressively hydrate before I go to sleep.

It's a hugely individual thing that is different for everyone, but I can tell you personally that I pretty much never have stomach pains anymore. I still get a bit bloated if I eat too much too fast just like everyone else, but no aches, cramping, etc anymore.

I would recommend at least starting to explore your options by meeting with surgeons and finding someone you're comfortable with so that you're ready if and when you decide to proceed with surgery.

Somewhat off topic though, how much do you weigh? 25 mg of Imuran is a very low dose. Something like 1 mg/kg is more typical and usually more therapeutic.
mgmt10mgmt10Member
The majority of people who have j pouch surgery go on to lead totally normal lives and never regret the decsion to have surgery. Then there is the small percentage of people who have a bad outcome and have issues. Thankfully I'm in the majority and my j pouch has given me my life back. I think many of the troubles cases are those who had a misdiagnosis and actually have Crohn's and not UC. Also, a highly skilled surgeon who has done many of these procedures is a must.

You can also totally skip the j pouch and just have a permanent ileostomy. I have two family members with successful j pouches so I knew in my heart I wanted to go for the j pouch no hesitation.

The dysplasia would worry me and I would think long and hard about it. Make sure you are vigilant with that and get scoped often to make sure there isn't any changes.

Go for some surgical consults and explore your options and get is much info as you can. I interviewed a few surgeons before picking one. All the best to you...

PS- I still enjoy cocktails and some wine with my j pouch. You can still enjoy these things. But since alcohol is dehydrating, you just need to make sure you drink plenty of water afterwards. And I have no dietary limitations either.
Last edited by mgmt10
kathy smithkathy smithMember
Usually with a j-pouch you will visit the bathroom as many times as you now use it to urinate. With a j-pouch, you may feel an urge to go but you can delay using the bathroom for quite a while.

The concern is the dysplasia - you should probably seriously consider surgery because of that. It's my understanding that colon cancer is a slow-grower so you have time to wrap your head and guts around your decision.

I've never had a problem drinking to excess (I didn't really 'admit' that...) when I wanted to. I now hardly drink at all because alcohol doesn't seem to like me but that has nothing to do with my j-pouch. Your days of enjoying bevvys should definitely not be over.

One thing to consider is that you are now in control of whether or not to have surgery. If you wait, that decision might be taken out of your hands and it might result in an emergency situation. Yes, having the decision taken out of your hands might sound like a good deal, but it's almost always not. It usually means a longer hospital stay, longer recovery, and often 3 rather than 2 surgeries. I always mention that one can make the decision to have the surgery and then back out right up until they give you anesthesia. This can sometimes alleviate that 'not being in control' of the situation.

And once you make a decision to have surgery, many people have found that the colon becomes all nice and everything. Almost acting like it's a healthy piece of plumbing. Don't believe it. It's just trying to fool you into thinking all is right in the world. As soon as you believe it and decide not to have surgery the colon will resort to his/her former bad behavior. It does sound like it's time to divorce that bad organ.

Good luck with your decision. I know how difficult this can be.

kathy Big Grin
rachelravenrachelravenMember
I had my surgery for UC at age 19, and went on to have a "college" experience. Wink Draught beer makes me go more with my J pouch, but wine and canned/bottle beer doesn't so much. I always would drink loads of water when I drank, though, to help prevent dehydration. I've never been one for hard liquor. I prefer dry reds these days. I don't drink a lot these days, because I now have GERD symptoms, and sometimes THAT'S what puts me off... But not my pouch. Smiler

I had no choice but to have the surgery... Back then I pretty much only had Azulfadine and steroids to control things; no biologics existed. When they failed on bowel rest, it was bye bye colon.

I'm 22 years in, and it's still a new adventure, sometimes. But my post op with everything was smooth sailing, relatively speaking, and I was back to a "new" normal in about a year. I had just started dating the man I ended up marrying at the time of surgery, and he was cool with it all, and I never let it hold me back. I was able to eat anything then, but I kind of avoid nuts, mushrooms, popcorn, and quinoa these days.
S SalmakMember
thanks for the prompt replies people!

Mad hatter - My doctor has mentioned them however for whatever reason hasn't ever prescribed them.

Scott F - the travelling I was referring to was the train to work in the morning. As you can imagine public transport (trains getting stuck in the morning etc) strikes fear into my heart currently!

I know that having an uninterrupted day is unrealistic, and not what I am expecting. If I could get through the day with a bm before work, lunch and after work for instance that'd be handy. I guess for me currently the urgency and unexpected nature of my bms causes me a lot of stress at work. Being able to hold for a peroid of time, and having the confidence to know I am going to be able to consistently acheive this would change how I think about my day a lot I think.

Pluot, I weight about 86kg at the moment. the 25mg relates to my pred dosage, I'm currently taking about 250mg imuran Frowner

If you dont mind me asking how active are you bowels in the morning? Currently with my UC I have 2/3 bms within an hour or two of waking up. Fairly unpredicable which generally completely deters me from wanting to leave the house. I also never have that 'satisfied' sensation, and am continually wondering when my next bm will come which is fairly unpleasant on occsions. These are the types of sensations I hope a pouch will be able to fix.
rachelravenrachelravenMember
I'm pretty slow in the morning these days. Sometimes I don't go til maybe 11am, sometimes I go once on awakening. Depends what I eat the night before, but I generally don't eat after 7pm (that's just me... I can, I just don't).

I go most in the evening. Maybe 1-3 times before bed, always able to be deferred.

I'm two decades in, though... so my pouch is able to hold more. But I was 19, remember, when I had it done. I started nursing school 4 months post takedown, and commuted to school, and I was fine and never had an issue. With UC, I could barely drive to school, and even had accidents on the way. The pouch made the unpredictability go away for me.

Usually on a 12 hour nursing shift, when things are good and normal, I go 2-3 times, but I'm in and out in about 5-10 minutes. It's very manageable. I mean it has to be. Though ICU nursing is unpredictable, and I often have to defer it a bit there. But I can.

Good luck with your choice. I think at your young age, the dysplasia would scare me enough. My dad had a friend who had UC in the 70's who was too vain to get an ileostomy (only choice then), who developed colon cancer from it and died from it, unnecessarily at a young age. I knew of him, and knew I didn't want to go there, and was thankful for the J Pouch option in my young years. If I ever need to return to an ostomy, I'm not afraid of it either now.

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