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I quit my job :( wondering about surgery

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Posted 12/30/2018 2:02 PM (GMT 0)
Hi let me ask, some of you say you change your bag every 2-3 days? What surgery is this? Do you smell, can people smell the waste in the bag when you had on that long? What are these noises people talk about.?

I want to be done with it all. What’s the best surgery and least complicated to manage afterwards please.

I have urgency now, I don’t want to deal with this anymore, I want to really enjoy life.

Typing this is making me cry, I never thought I would consider surgery. Ever.

I quit my job, couldn’t take the stress and the accidents .

Thanks
Posted 12/30/2018 6:33 PM (GMT 0)
I am sorry you're struggling. You've been dealing with active inflammation for as long as anyone it feels like. Have you spoken to your GI about surgery? Have you consulted any surgeons? Have you had upper GI tests to rule out crohn's?

I had an ostomy temporarily and I wouldn't even change it every 2-3 days, I could go a full week. There is no smell, unless you're emptying. The smell when you empty is quite pungent, but so is going to the bathroom! You have to empty the pouch when it fills up. I would imagine most people empty it about 6x a day. The system is completely closed so you shouldn't smell anything at other times. If there's a smell it would be leaking, which isn't common once you figure out what works for you.

The least complicated surgery is the end ileo. It's one step and you're done. Managing the ileo though, may be a little more work than a jpouch, but the jpouch is definitely a more complicated procedure that takes multiple steps. Dealing with the ileo gets very easy with time. It's kind of like if you have that time of the month, you know what you need, and you make sure it's available... The jpouch, you don't need anything, but you still deal with going more often and butt burn.

The noises are with the ileo, since you can't control it, it can be outputting anytime. If you ate something gassy, the sound will come out of the stoma. it can happen anytime. You could be in a quiet theater and a noise can come out. You can muffle it by putting your hand over. People who have it for longer periods say it's less and less problematic over time, but I always had a lot of gas issues, so I don't know if it would have gone away for me...

I never thought i would end up needing surgery either. It's difficult to accept, but overall, it has improved my life a ton.
Posted 12/31/2018 7:47 PM (GMT 0)
Hi there I'm sorry you're not feeling well.

Look I was in a similar position as you. I had to quit my job when I had my last flare. I tried two more medications and my GI agreed with me that I'm close to the end. I decided to have surgery and I setup my appointment after the first consultation with the surgeon. I'm so happy I made this decision. At this time I'm with the ileostomy.

It takes a little time to get used to it. I've had my surgery on November 8th and I've had two leakages so far. Both times were my own fault because I ate too much before going to sleep haha

It makes noises when there is air. When I'm around co-workers and I'm sure they heard it, I apologize. But they usually don't mind at all. At home it doesn't bother anyone. My husband also keeps telling me that there is no bad smell at all. In the beginning there was this bad bile smell but then again my sense of smell was distorted due to the anesthesia so even good smelling foods smelled awful to me to the point of nauseating me. Thankfully it only lasted a few days and then I was able to smell foods again and it was amazing.

I could go on forever with the bag to be honest with you. I love how easy it is. Although I'm lactose intolerant, it doesn't bother me anymore when my coffee happens to have milk now. I'm cleared to eat every food, but I just recently tried rice and corn chips. Problem food even while being in remission. I had no problems at all. I'm usually a little worried about obstructions because I had one right after surgery (too much pain meds, again my own fault). I use Metamucil every day and I love it. It moves things along and thickens the output. It makes it easier to empty. Hopefully this will be true for the j-pouch. I do want to have the other two surgeries because I don't want to be depended on the bag but if for some reason the j-pouch won't work out for me I will have no problem going back to the bag I think.

I know making the decision is hard. You need to be ready. Quitting your job because you're too sick for it is a sign that you're ready. My last flare was by far not the worst I've had. But it was the one where I decided that I've had enough. I knew 5 years ago after I came out of my flare at that time that, if I flare again, I'll have surgery. I kept my own promise to myself and I had it. People around me tell me that I seem to have more energy and I've also been able to gain weight again. I can eat everything. I'm happy now.
Posted 1/1/2019 6:52 PM (GMT 0)
My appliances can last anywhere from 1 to 7 days and I even take a bath every day though I try not to get it too wet. The appliance and bag are separate in a two step appliance/pouch combo some come as one unit there for you could just change the bag out and keep the appliance longer. There are drops/tablets you can put in the bag to reduce smell. If you had this and a gentle toiletry scent spray you would have no issues, though keep in mind certain foods will smell worse than others and it's kinda interesting figuring this out. Unless the bag leaks there is no smell as it's an airtight system until you empty it. I've had maybe 5 pouch issues in the last 5 years and looking back I think they were all my fault, either not closing the tip enough at first and letting the appliance go a bit too far at night. As far as noises I only notice the noises when I eat either very fibrous foods or no food at all leading to a lot of built of air that needs to come out, but with a light snack things seem happy and no one notices anything. The sounds is very similar to a stomach gurgling when it's hungry and it's easy to blame any noise on a, "Oh I must be hungry.. sorry."

If you want as little risk as possible and to avoid the possibility of a failed Ileo jpouch I would suggest going with a total colectomy with an End Ileostomy.

With an Ileostomy you can pretty much eat whatever you want, pain free, I only struggle with keeping hydrated on the really hot days then again I'm quite active at my job. Which means I just have to focus on bulking foods and more liquids. Part of my hydration issue is missing Small intestine that was removed in the formation of the Jpouch that then failed, so you may not have this issue at all either as I did not when I originally had the Ileo's waiting for the 2nd/3rd step surgeries.

I think all of us here had a similar mindset, no one thought they were gonna ever go under the knife but the human being is amazing at adapting to any situation. For instance at work no one even knows I have a bag unless I tell them, also I had the 3 step Jpouch surgery (which failed unfortunately) but on the 3rd surgery you end up closing up the Ileostomy as they reconnect the intestine and this is the honest truth I kinda missed having the bag so I ended up going back to it, it's really not the end of the world and much better than suffering 24/7.

Post Edited (Virdent) : 1/1/2019 12:04:15 PM (GMT-7)

Posted 1/4/2019 6:02 PM (GMT 0)
I had major open surgery for colon and bladder cancer. In the end I received a temporary ileostomy while my colon heals and I go through chemo. I still have most of my colon and the bladder capacity was reduced by about 25%. For me recovery was not painful at all. I kept feeling better and better. I left the hospital after 6 days. I didn't take any of the painkillers I was prescribed or any OTC painkillers either.

Getting used to an ostomy pouch is a steep learning curve (aka making a lot of mistakes). In the first month we (me and my husband) were replacing the pouch a lot because we didn't know how to deal with leaks with a stoma that kept changing shape. Over time, it has gotten easier. Pouch changing now takes less than 30 minutes. I have a loop stoma (oval shaped) so the pouches have to be custom cut every time. Now, after 3 months we change pouches every 3 days. After that, the pouch gets too smelly for me and the paste (I use paste instead of a pectin ring) starts eroding.

My stoma wakes me up around 4am gurgling, burping, and farting. It settles down later. I think it's funny.
Posted 1/6/2019 7:18 AM (GMT 0)
I'm so sorry you've been having such a hard time with this flare. 🙁. As for surgery, it depends on if you want a permanent ileostomy or a jpouch. My first surgery was an end ileostomy. It was pretty easy to manage once you figure everything out. In the beginning you will change you wafers every few days since your stoma is changing size. After a month or two it stops changing so you can wear your wafer longer (as long as you have no leaks). As others stated, there is no smell unless your emptying. I did use the deodorant drops so help with this and they really do work. And yes, what you easy does effect the smell when emptying. I avoided any kind of fish and seafood during the time I had a bag. 😊. The noise I had was usually first thing in the morning after I started eating breakfast. It seemed if I went a long period of time between meals then my stoma made noise.

So you have a couple options for surgery. You can opt for a permanent ileostomy, the jpouch or there is the BCIR surgery. Though the BCIR surgery is specialized and I think you can only get it done in Florida. Research and see what would be the best for you. Good luck.
Posted 1/11/2019 12:51 PM (GMT 0)
There are accessories and products that you can add to remove the smell (it normally isn’t a problem). There are crystals that absorb water.

There are all sort of products to fix ostomy issues, these are very mature and devolved products.

I woke up from my colectomy and I felt so much better and healthier after my colon was refused, albeit sore. Life is so much better without my diseased colon.

Think about your quality of life.
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