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Jpouch?/ anxiety? new to site.. I need all the advice and input i can get please :(

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Posted 10/24/2017 12:43 AM (GMT 0)
im 20 years old, diagnosed with UC since i was 2, struggled with it for years until sulfasalazine helped control, UC inflicted auto immune hep at 14, started flaring when i was 18 and then again at 19 both controlled by pred. went into a flare April 2017 and here i am late october. my immuran and lialda no longer was controlling my flaring and i started remicade May 2017, landed in hospital June-July and released on low residue diet but no progress and a higher remicade dosage with added pred. only felt slightly better during my pred but once weaned off, all symtoms returnedsad chronic lower left back pain and front abdominal pain, still frequently seeing blood in stool, extreme urgency and many, many accidents. october 3 got a scope to see how remicade was working. concluded that remicade wasnt working, and today my doctor said the biopsies show some pre-cancerous tissue and that although entyvio may not work in my favor, we could give it a try but to also keep in mind the results of biopsy (thinking colon cancer down the road) and that the entyvio wouldn't help with that. He of course brought up my biggest fear, the surgical option that is looking likely. growing up with UC has given me such anxiety over hospitals, surgeries, etc and i havent been able to even fathom a 3 part/invasive surgery like this and i am just overwhelmed with the idea of being cut open and creating anything from my intesines, or even the temporary opening bag i will need during recovery of first procedure. any feedback from those who have had one, who have struggled with the anxiety of surgery especially so invasive.. i would appreciate it. I will be consulting with a surgeon as well soon but i would really appreciate hearing from you guys, who have been my go to for answering my flare questions this year.

thank you
1999 sulfasalazine
2011 immuran/lialda
2015 " + pred
2016 " + pred
2017 immuran, Remicade, pred, entyvio?
Posted 10/24/2017 12:55 AM (GMT 0)
I was in similar shoes a few years ago, ran through all the drugs, nothing helped enough to keep me stable. I had surgery. Not to sugarcoat it, but it's been the best thing for me. There are people with all sorts of experiences with surgery, but the majority of people who have surgery put an end to their UC problems. I know, for me, it has given me my life back.

I hate to sound negative about the options, let's just say you have luck with entyvio, how long will it work? 1 year, 2 years, until the precancerous changes are cancerous? Maybe you could hang on to your colon for a while, but you will fight constantly to do that. I lost a lot of my 20s and 30s to UC. I am finally living again. As invasive and inconvenient surgery was, it would be easier if I were under my parents roof and able to lean on them and their insurance & financial/emotional support. Younger people are also the ones with the best results & the least trips to the toilet. Maybe you can hang on ten years, then it will be later in your life, and you may have emergency surgery due to active UC or CC. You're also harming yourself with prednisone over the years. Sounds similar to my case, it was now or in 5 years and I chose now. Surgery was rough, don't get me wrong, but nothing I didn't get through with flying colors. I remember thinking people who had surgery were so brave and inspirational, and now I see we are just people who wanted to live our lives free of illness. I take no drugs now, don't go to doctors, don't worry about toilets... It's nice.

on the other hand, have you had stool tests?

Nothing you do is going to change the cancerous thing, that's the main reason I'd say surgery is likely in your future at some point.
Posted 10/24/2017 1:04 AM (GMT 0)
@notsosicklygirl yeah ive had multiple stool tests, and basically i understand logically that surgery would be a smarter option just because i would either face now or later these colon cancer issues regardless if my flare got under control potentially with entyvio, but would you mind describing your experience in short? maybe i have a scarier thought of it in my head, but i would be doing the laperoscopy option- sizes of incisions, procedure times, pain after? also have you had any complications afterwards with yours?


notsosicklygirl said...
I was in similar shoes a few years ago, ran through all the drugs, nothing helped enough to keep me stable. I had surgery. Not to sugarcoat it, but it's been the best thing for me. There are people with all sorts of experiences with surgery, but the majority of people who have surgery put an end to their UC problems. I know, for me, it has given me my life back.

I hate to sound negative about the options, let's just say you have luck with entyvio, how long will it work? 1 year, 2 years, until the precancerous changes are cancerous? Maybe you could hang on to your colon for a while, but you will fight constantly to do that. I lost a lot of my 20s and 30s to UC. I am finally living again. As invasive and inconvenient surgery was, it would be easier if I were under my parents roof and able to lean on them and their insurance & financial/emotional support. Younger people are also the ones with the best results & the least trips to the toilet. Maybe you can hang on ten years, then it will be later in your life, and you may have emergency surgery due to active UC or CC. You're also harming yourself with prednisone over the years. Sounds similar to my case, it was now or in 5 years and I chose now. Surgery was rough, don't get me wrong, but nothing I didn't get through with flying colors. I remember thinking people who had surgery were so brave and inspirational, and now I see we are just people who wanted to live our lives free of illness. I take no drugs now, don't go to doctors, don't worry about toilets... It's nice.

on the other hand, have you had stool tests?

Nothing you do is going to change the cancerous thing, that's the main reason I'd say surgery is likely in your future at some point.

Posted 10/24/2017 2:55 AM (GMT 0)
I posted a really long account that may be worth a read. I don't think I ever really updated after the reconnection but you can read the majority here: www.healingwell.com/community/default.aspx?f=38&m=3569886

The whole thing is pretty crappy to go through, but I think I had the least crappy situation possible. I've seen a lot of people breeze through, and i've also seen some people struggle with complications. I didn't have any personally. I was lucky I guess. Everything went as planned. I had to do 3 steps unfortunately, but it was lapro and I was out of the hospital in the minimum time with each. I was able to eat whatever i wanted after each step. I was eating takeout in the hospital after step 1. I hadn't enjoyed a decadent meal (or anything flavorful) so log prior to that... I believed all the food was causing the symptoms. Now I eat whatever, I lost all the pred weight, my face is no longer fat, I can work long hours, I can travel, I can plan ahead and it's predictable, I can take off on a whim, I don't take drugs.. it's better for me. The worst part is going more & that it can be noisy, but things definitely calm after a while.
Posted 10/24/2017 3:29 AM (GMT 0)
Thanks for getting back to me. something i didnt even REALIZE was that my ostomy bag incision wouldnt be closed?? i was under the impression that in any surgery you are sewn back up prior to waking up. I cant even wrap my head around waking up and seeing my own intestine sticking out of a hole in my body?? how do you even adapt to that, as someone who has hardly been able to see blood...how often did you have to see your stoma when using your bag realistically? i just cant even bear that part of it.. your insides belong inside not sticking out of yousad


notsosicklygirl said...
I posted a really long account that may be worth a read. I don't think I ever really updated after the reconnection but you can read the majority here: www.healingwell.com/community/default.aspx?f=38&m=3569886

The whole thing is pretty crappy to go through, but I think I had the least crappy situation possible. I've seen a lot of people breeze through, and i've also seen some people struggle with complications. I didn't have any personally. I was lucky I guess. Everything went as planned. I had to do 3 steps unfortunately, but it was lapro and I was out of the hospital in the minimum time with each. I was able to eat whatever i wanted after each step. I was eating takeout in the hospital after step 1. I hadn't enjoyed a decadent meal (or anything flavorful) so log prior to that... I believed all the food was causing the symptoms. Now I eat whatever, I lost all the pred weight, my face is no longer fat, I can work long hours, I can travel, I can plan ahead and it's predictable, I can take off on a whim, I don't take drugs.. it's better for me. The worst part is going more & that it can be noisy, but things definitely calm after a while.

Posted 10/24/2017 12:30 PM (GMT 0)
Best case you see it every 5-7 days when you change your bag. You have to look at it when you change your bag and touch it/clean it. No way around it.

It's really not a big deal, you get used to it. It's just for 8 weeks or so if you get a 2 step surgery done (the younger, the easier a 2 step is since you heal faster as long as you're not on too much pred).

Long run, it's worth it. You're just struggling (it sounds like), with a jpouch you can actually live. For example, I have a jpouch and for me the deciding factor was when I had to change plans with family and friends and couldn't attend due to UC while everyone else went.

Post Edited (Bull101) : 10/24/2017 7:07:58 AM (GMT-6)

Posted 10/24/2017 12:45 PM (GMT 0)
It sounds like you've had a very rough time with UC, and it is time to get rid of the cause of your troubles: that large intestine that's caused you no end of troubles. Everyone is a bit scared of the prospect of surgery, so you aren't the only one by any means. It's perfectly normal to have some fear of it, healthy and all, as it is a big change and we all fear the unknown.

Think of it as a means to an end of your troubles, and do not get caught up in every little detail that might scare you or get your anxiety levels up. Especially if any detail or multiple details of a surgery get your anxieties up.

Rather, ask yourself what would it be like to not have to make excuses around your UC, to be able to go out and have fun with your peers, and to travel, etc.? We all know how brutal UC flares can be, how we can be housebound, and fear leaving the house for anything never mind to have fun or to socialize. We have a number of posters who have a j-pouch and their quality of life is so much higher than it was while their UC was flaring uncontrollably for years. In fact, many wished they had done it sooner, as you cannot get back lost time when you were flaring and miserable. Afterwards, you aren't limited by UC worries, you can hold a bm for 1/2 an hour, an hour, or even hours before going (something that's impossible with active UC inflammation).

You can always ask your surgeon if you are a candidate for a 1-step or 2-step surgery which would involve less steps. Not everyone is a candidate for them, it depends on your health, weight, and you are best not to be on high doses of steroids.

Ask your gasteroenteroligist or surgeon if you can meet some UC patients who've undergone the surgery in your area. It might help to meet a few folks face-to-face, and know they are fine, and ask them what bothers you.
Posted 10/24/2017 3:44 PM (GMT 0)
Does it not hurt to be touching your internal organ? i just think of possible pain, sanitation, etc. on top of the gross factor, which is actually how bad?

Bull101 said...
Best case you see it every 5-7 days when you change your bag. You have to look at it when you change your bag and touch it/clean it. No way around it.

It's really not a big deal, you get used to it. It's just for 8 weeks or so if you get a 2 step surgery done (the younger, the easier a 2 step is since you heal faster as long as you're not on too much pred).

Long run, it's worth it. You're just struggling (it sounds like), with a jpouch you can actually live. For example, I have a jpouch and for me the deciding factor was when I had to change plans with family and friends and couldn't attend due to UC while everyone else went.

Posted 10/24/2017 3:47 PM (GMT 0)
Yes, there are people who will do 1 step procedures, but they tend to be uncommon and not recommended. I personally think, if 3 steps give you the best result, do 3 steps. If the surgeon says you're a good candidate for 2 steps, do 2.

I had the ostomy for almost 20 weeks I guess. 12 weeks after step 1 and 8 weeks after step 2. I was not excited about having it. I researched everything to death. I probably would have traveled and done a 1 step if I could have made it happen, but looking back, I am thankful I did it how I did and that I am doing well now. Living through 8 or 20 weeks of something you're not familiar with, is better than taking an unnecessary risk that may impact the rest of your life. It's also an opportunity to see what life is like if you ever had to have an ostomy. You may see that it's really not that bad. Yes, having something sticking out, seems crazy, but when you're able to do whatever you want & eat whatever you want, the bad may seem a bit more balanced. Plus, you're not spending a bunch of time sitting on the toilet, at doctors and on drugs.

I notice the ostomy seems like the end of the world for younger people who are very focused on what people think. The people I've seen get them who have kids, it gives them the ability to feel better & get out and experience life, give their energy to their families, enjoy themselves... they have a completely different view of living with an ostomy. In your case it's temporary. It's something you would have to get over to get to a healthier place for yourself. Hopefully when you're ready for the next phase of life you would be ready to live, & not worried about toilets and surgeries.

They say the surgeon is the #1 factor in determining the outcome - you need to do a lot of research. You should go out and consult with some surgeons, feel it out. Don't make any plans unless you're ready, but at least have the planning in your pocket so you can move when/if you need to. The last thing you want is an emergency situation that impacts the viability of your candidacy for a 2-step or a pouch entirely. With the severity you describe, and the cancerous changes, and the failure of the drugs, it's better to have a plan for surgery even if you don't need to use that plan.
Posted 10/24/2017 3:52 PM (GMT 0)
All good advice. The whole caring what people think of the ostomy bag isnt tough for me, personally. I am very open about my UC and all its disturbing qualities to those in my life. Its more the stoma aspect just for myself. I am EXTREMELY sensitive to the human anatomy, I have developed many anxieties over the years and have a hard time even watching a FISH get cut open, so i am just very worried about the stoma sticking out and how i will be able to get used to that at all. In my mind so far, it just sounds so dangerous and unsanitary to have it protrude from your body?
also, how was the pain waking up? what did you experience coming out of surgery? what was connected to your body and all that? I want to prepare myself for what some have experienced so im not surprised..


notsosicklygirl said...
Yes, there are people who will do 1 step procedures, but they tend to be uncommon and not recommended. I personally think, if 3 steps give you the best result, do 3 steps. If the surgeon says you're a good candidate for 2 steps, do 2.

I had the ostomy for almost 20 weeks I guess. 12 weeks after step 1 and 8 weeks after step 2. I was not excited about having it. I researched everything to death. I probably would have traveled and done a 1 step if I could have made it happen, but looking back, I am thankful I did it how I did and that I am doing well now. Living through 8 or 20 weeks of something you're not familiar with, is better than taking an unnecessary risk that may impact the rest of your life. It's also an opportunity to see what life is like if you ever had to have an ostomy. You may see that it's really not that bad. Yes, having something sticking out, seems crazy, but when you're able to do whatever you want & eat whatever you want, the bad may seem a bit more balanced. Plus, you're not spending a bunch of time sitting on the toilet, at doctors and on drugs.

I notice the ostomy seems like the end of the world for younger people who are very focused on what people think. The people I've seen get them who have kids, it gives them the ability to feel better & get out and experience life, give their energy to their families, enjoy themselves... they have a completely different view of living with an ostomy. In your case it's temporary. It's something you would have to get over to get to a healthier place for yourself. Hopefully when you're ready for the next phase of life you would be ready to live, & not worried about toilets and surgeries.

They say the surgeon is the #1 factor in determining the outcome - you need to do a lot of research. You should go out and consult with some surgeons, feel it out. Don't make any plans unless you're ready, but at least have the planning in your pocket so you can move when/if you need to. The last thing you want is an emergency situation that impacts the viability of your candidacy for a 2-step or a pouch entirely. With the severity you describe, and the cancerous changes, and the failure of the drugs, it's better to have a plan for surgery even if you don't need to use that plan.

Posted 10/24/2017 4:56 PM (GMT 0)
Surgery is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - There are also some good blogs out there that really help you get a handle on what the process is like -
Posted 10/24/2017 4:57 PM (GMT 0)
You should consult and they will explain everything regarding the sanitary aspect. It's probably not the most "sanitary", but it's easy enough to manage. Your intestines are made for stool, and the little piece sticking out isn't going to get infected or anything. The skin around is the problem. Most of the time it's 100% covered and you wouldn't get output on that skin but there are times when the skin gets "weepy" and you have to use powers or rings. As people who had temps, we will never be 100% professional with the pouch like a person who has lived with it for a long period. We will also never have function as well. Over time, it slows and becomes more routine. When you're living with a temp, you're still dealing with the immediate post-surgical stuff, like gas, and faster transit, fear, lack of experience... I used to shower naked often with my end stoma. It was weird, they would say it's like a little rose. Something nicer to think of than a "stoma" or intestines. Mine was small and cute, but a bit shorter than it needed to be to be the most functional. Since it was temporary, i didn't care. The skin under the wafer got weird for me and it took a while to heal. I still can't believe I lived through all that. hehe, explaining it feels like I am telling someone else's story, that's how quickly you forget it happened. I have a 1 inch scar below and to the right of my belly button from the stoma. I also have the bikini incision lower on my abdomen but you can't see it because it's lower than any bottoms you would ever wear. I wish I didn't have any scars of course. You should look up pictures of what to expect in that respect.

The pain after surgery was pretty rough upon immediately waking up, but by the time you're able to tell them the pain level, they dose you with drugs that minimize the pain. There will be a pain management team and their only goal is to make sure you're comfortable. I also had nerve blockers in my stomach, my insurance paid for that, and I don't tolerate opiates well, so I went for it. I had a lot of cramps & they gave me muscle relaxers. You get to your room and sleep a lot. I think I started walking the day after, the first few times you get out of bed it's really difficult. You have to use the pain pump. Over time, it gets easier. The first couple nights, you have people checking on you constantly. Then when you get the catheter out, you have to get to the bathroom, and at first they take you, but within a few days you can go by yourself. Crazy how fast we heal. I was ready to leave at 3 days. They teach you how to do all the ostomy stuff. I actually started learning before. I met the nurse, she gave me an informational packet and some supplies... she was there after to show me more. It's a crazy process, but it is better than the alternative, especially when you have cancerous changes so young.
Posted 10/24/2017 5:48 PM (GMT 0)
Thanks for getting back to me during my all time high anxiety!
some of the questions i have are stupid maybe but i am learning as i read your responses. pain pump? is that inserted surgically? where is it and do you have to surgically get it taken out/does it hurt? does the stoma itself hurt? it just seems logical that an open wound with a body part sticking out would hurt. do they not put you on pain meds before you wake up?
ugh i keep learning new terms and all that and i will definitely be consulting with a surgeon asap but just to ease my anxiety and stress until then to fill in the blanks this is helping (didnt sleep last night) thank you guys.

notsosicklygirl said...
You should consult and they will explain everything regarding the sanitary aspect. It's probably not the most "sanitary", but it's easy enough to manage. Your intestines are made for stool, and the little piece sticking out isn't going to get infected or anything. The skin around is the problem. Most of the time it's 100% covered and you wouldn't get output on that skin but there are times when the skin gets "weepy" and you have to use powers or rings. As people who had temps, we will never be 100% professional with the pouch like a person who has lived with it for a long period. We will also never have function as well. Over time, it slows and becomes more routine. When you're living with a temp, you're still dealing with the immediate post-surgical stuff, like gas, and faster transit, fear, lack of experience... I used to shower naked often with my end stoma. It was weird, they would say it's like a little rose. Something nicer to think of than a "stoma" or intestines. Mine was small and cute, but a bit shorter than it needed to be to be the most functional. Since it was temporary, i didn't care. The skin under the wafer got weird for me and it took a while to heal. I still can't believe I lived through all that. hehe, explaining it feels like I am telling someone else's story, that's how quickly you forget it happened. I have a 1 inch scar below and to the right of my belly button from the stoma. I also have the bikini incision lower on my abdomen but you can't see it because it's lower than any bottoms you would ever wear. I wish I didn't have any scars of course. You should look up pictures of what to expect in that respect.

The pain after surgery was pretty rough upon immediately waking up, but by the time you're able to tell them the pain level, they dose you with drugs that minimize the pain. There will be a pain management team and their only goal is to make sure you're comfortable. I also had nerve blockers in my stomach, my insurance paid for that, and I don't tolerate opiates well, so I went for it. I had a lot of cramps & they gave me muscle relaxers. You get to your room and sleep a lot. I think I started walking the day after, the first few times you get out of bed it's really difficult. You have to use the pain pump. Over time, it gets easier. The first couple nights, you have people checking on you constantly. Then when you get the catheter out, you have to get to the bathroom, and at first they take you, but within a few days you can go by yourself. Crazy how fast we heal. I was ready to leave at 3 days. They teach you how to do all the ostomy stuff. I actually started learning before. I met the nurse, she gave me an informational packet and some supplies... she was there after to show me more. It's a crazy process, but it is better than the alternative, especially when you have cancerous changes so young.

sad sad confused confused confused
Posted 10/24/2017 6:28 PM (GMT 0)
The stoma does not hurt no. There actually aren't any nerve endings so you can touch it mostly without it hurting, the skin around it some but that all depends on case by case basis.

Pain pump is nothing more than an IV in your arm that's hooked up to a morphine machine and every time you press the button the machine gives you a shot of morphine through your IV, it's great.

Pain meds come after a few days of being on morphine (pain pump), which is actually not as strong as the pain pump. It's just mainly soreness than pain I think. Imagine you're really really really really sore in your abdomen that's what the "pain" was for me at least.

It's scary at first, but once you're in the situation there's worse things I think.
Posted 10/24/2017 6:36 PM (GMT 0)
For the pain pump, it's just a button connected to a device that lets you administer pain medication into your IV line. I think it allows you to press the button every 9 minutes or so. When you feel pain, just press the little button and you'll get a small amount of pain medication. The stoma itself does not hurt, there are no nerve endings to it, I touched and washed mine all the time with no pain at all. It is delicate skin tho so just make sure not to bump or bang into things with it. The stoma is stitched into position. You may see it move slightly every so often but it's completely normal. You will have access to pain meds when you wake from surgery, you'll be in a recovery room and will be taken care of. They will ask about your level of pain and should administer accordingly. I started out with a pain pump, then was moved to straight IV pain meds every 4 hours then oral pain meds.
Posted 10/24/2017 6:39 PM (GMT 0)
I was given Dilaudid for pain in my pump, I didn't like Morphine. When you're moved to straight IV pain med injections, IV pain meds kick in faster but don't last as long as oral pain meds. Oral pain meds take longer to kick in but last longer IMO.
Posted 10/24/2017 6:41 PM (GMT 0)
My quality of life was crap (no pun intended) and that's what pushed me to surgery, meds no longer worked for me. Even with all the complications I had following surgery, I'm very happy with my decision and I'm living medication and doctor free.
Posted 10/24/2017 8:02 PM (GMT 0)
The stoma doesn't have any nerve endings, so it doesn't hurt. You can cut it and make it bleed, and you still won't feel a thing. As for infection, why would it be any more prone to infection than your anus is? That said, having a stoma is a steep learning curve for most people; chances are you won't have it for long enough to fully get used to it or to come to terms with it. But if it *was* permanent you'd get used to it and it would become just another neutral body part eventually. That's what happened to me (I had a stoma for 2 and a half years).
Posted 10/24/2017 9:21 PM (GMT 0)

NeedUChelp said...
Thanks for getting back to me during my all time high anxiety!
some of the questions i have are stupid maybe but i am learning as i read your responses. pain pump? is that inserted surgically? where is it and do you have to surgically get it taken out/does it hurt? does the stoma itself hurt? it just seems logical that an open wound with a body part sticking out would hurt. do they not put you on pain meds before you wake up?
ugh i keep learning new terms and all that and i will definitely be consulting with a surgeon asap but just to ease my anxiety and stress until then to fill in the blanks this is helping (didnt sleep last night) thank you guys.
sad sad confused confused confused

When they call you in to prep for surgery, they place an IV line. Everything is administered through there. I didn't feel anything until I woke up, and even then, it mostly felt like straining or cramps and it was managed quickly. I remember one of my nurses gave me a shot to numb before placing the IV line even. The problem is that there's a prick, either the prick to numb, or the actual prick of the IV. None of that is fun, but it takes only a moment and after that, you don't feel any pain until you wake up. Getting wheeled around the hospital after they give you sedatives, or whatever, is always fun for me. I was making conversation and looking around, they wheeled me through a maze, I was laughing. Finally you get the the OR and if you're conscious you may see your surgeon and make odd, stupid conversation, but at that point you may be out. If you're up, they will knock you out fairly quickly at that point. I always had nice doctors and anesthesiologists. Sometimes they are attractive and you think "wow, I am really at my worst". No one cares though. it's a professional environment. Before you know it, you're waking up.

I think the best thing for you, is to stop stressing, firstly. Then consider the reality. You may need surgery, you may not, but the big picture is that you can live a fantastic life post surgery if it's necessary. It's not the end, it's the beginning of a life free of drugs, pain, and unpredictability. You may have a shift in perspective, you may become fearless, you may get a glimpse into a lot of things you weren't aware of in life. It will be okay. Don't stress. tongue If I did it, you can!
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