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Posted 3/31/2018 11:05 AM (GMT -7)

marcell said...

notsosicklygirl said...

marcell said...

notsosicklygirl said...
Are you looking for this type of thing:
/medlineplus.gov/ency/patientinstructions/000206.htm

Kind of what they would give you in the hospital if you were on a liquid diet?

I didn't eat at all when my UC was bad. I know it's stupid, but I would pay so dearly on the toilet, it wasn't worth it to put anything in my mouth. I did drink liquids of course, mostly water. Then every few days I would have to give in and eat something, suffer the repercussions, and start the cycle over. It is no way to live for any extended period, but i knew I was headed to surgery and I needed to survive the days until my surgery date.

OMG. I never felt anything like that. That's too extreme. Did it start mild for you and then became this monster? How many times do you go to the toilet each day, after surgery?

It started off mild, and i was able to get into some remissions that lasted a year or two, but each time, it seemed like it was harder and harder to treat. At the end, prednisone was the only thing that helped. I don't keep count much since surgery, but i am sure I go 6x - sometimes more, sometimes less. I usually empty when I am in there peeing.

How's life quality? My GI told it gets way worse. That true? And as a result of not having a colon, do you have problems with low vitamins or bone ensity? So in some people colitis gets worse and worse, while in some other people, it gets better or gets in remission for a lifetime?

GI's treat with drugs vs surgically treating, that is their job... I think quality of life after surgery, for me, is better. It's easy to cherry pick things you like, and don't like, and it may seem like it's a worse quality. Going more often on a daily basis is a lot to accept, but on the positive side, you're free of drugs, doctors, monitoring, cancer risk, worry... The down side is going more, no guarantees, unrealistic expectations... In my case, surgery has provided the outcome I expected. I didn't think it was going to be like life prior to UC. Without a colon, you will never have stool as formed & you will go more often. If you can accept that, there are some positives.

Surgery will put an end to UC. The problem is when people deal with pouchitis or cuffitis, some people could be diagnosed with Crohn's after surgery. Doing thorough testing prior to having surgery can eliminate some of these risks, but there are no guarantees.

I am happy to be done with UC. UC used to be on the forefront of everything i did in life, every decision I made, everywhere I went. I was very quick to say "I can't get another degree" or "I can't seek a promotion", "I can't travel to another country", now I feel like i can do all those things. When it really comes down to it, that is more important to me than using the toilet more often. I love not waking up and organizing 10 pills, when I need my next infusion, or worrying about what to eat, if my immune function is compromised... I love not seeing a GI, not needing routing blood work, not worrying about side effects of drugs or wondering "what if this drugs stops working, what's next?".

I have a long story in my signature about my experience. It definitely hasn't been all rosy, but it's simplified my life a ton. The thought of UC rarely crosses my mind when I am not on HW.

Apologies to Chiron for hijacking the other thread turn
Posted 3/31/2018 1:24 PM (GMT -7)

notsosicklygirl said...

marcell said...

notsosicklygirl said...

marcell said...

notsosicklygirl said...
Are you looking for this type of thing:
/medlineplus.gov/ency/patientinstructions/000206.htm

Kind of what they would give you in the hospital if you were on a liquid diet?

I didn't eat at all when my UC was bad. I know it's stupid, but I would pay so dearly on the toilet, it wasn't worth it to put anything in my mouth. I did drink liquids of course, mostly water. Then every few days I would have to give in and eat something, suffer the repercussions, and start the cycle over. It is no way to live for any extended period, but i knew I was headed to surgery and I needed to survive the days until my surgery date.

OMG. I never felt anything like that. That's too extreme. Did it start mild for you and then became this monster? How many times do you go to the toilet each day, after surgery?

It started off mild, and i was able to get into some remissions that lasted a year or two, but each time, it seemed like it was harder and harder to treat. At the end, prednisone was the only thing that helped. I don't keep count much since surgery, but i am sure I go 6x - sometimes more, sometimes less. I usually empty when I am in there peeing.

How's life quality? My GI told it gets way worse. That true? And as a result of not having a colon, do you have problems with low vitamins or bone ensity? So in some people colitis gets worse and worse, while in some other people, it gets better or gets in remission for a lifetime?

GI's treat with drugs vs surgically treating, that is their job... I think quality of life after surgery, for me, is better. It's easy to cherry pick things you like, and don't like, and it may seem like it's a worse quality. Going more often on a daily basis is a lot to accept, but on the positive side, you're free of drugs, doctors, monitoring, cancer risk, worry... The down side is going more, no guarantees, unrealistic expectations... In my case, surgery has provided the outcome I expected. I didn't think it was going to be like life prior to UC. Without a colon, you will never have stool as formed & you will go more often. If you can accept that, there are some positives.

Surgery will put an end to UC. The problem is when people deal with pouchitis or cuffitis, some people could be diagnosed with Crohn's after surgery. Doing thorough testing prior to having surgery can eliminate some of these risks, but there are no guarantees.

I am happy to be done with UC. UC used to be on the forefront of everything i did in life, every decision I made, everywhere I went. I was very quick to say "I can't get another degree" or "I can't seek a promotion", "I can't travel to another country", now I feel like i can do all those things. When it really comes down to it, that is more important to me than using the toilet more often. I love not waking up and organizing 10 pills, when I need my next infusion, or worrying about what to eat, if my immune function is compromised... I love not seeing a GI, not needing routing blood work, not worrying about side effects of drugs or wondering "what if this drugs stops working, what's next?".

I have a long story in my signature about my experience. It definitely hasn't been all rosy, but it's simplified my life a ton. The thought of UC rarely crosses my mind when I am not on HW.

Apologies to Chiron for hijacking the other thread turn

I see. For you it was better to get the colon out, as your life quality was poor. Really? So some people can get UC and Chron's at the same time? OMG that's a lot. I noticed some people still take meds after surgery. That's not right. I see there's no guarantees, since it seems that the disease acts differently in different individuals. I read that someone people heal all of a sudden, for no reason. And some people get worse for no reason too. So what will happen to me and even you is still unpredictable, right? We might never feel a thing again or get worse?
Well, when you go to the toilet, all is liquid? Do you have any issues with low vitamins or bone loss?
Posted 4/1/2018 8:05 AM (GMT -7)
In those cases, I am not sure if it's UC and Crohn's, or a misdiagnosis, or development of Crohn's after colon removal for some reason. The scary part is that it is a bit of a mystery. At the same time, people who deal with these situations often find it easier to manage regardless. Look at ks1905 here, he has pouchitis, which is now being called "crohn's", and he lives much better treating that with his pouch vs living with active UC throughout his colon. While surgery is not perfect, for me, I'm in my third year since, and things are much more predictable. No one knows what the future holds. With UC, I knew I lived each day with a ticking time bomb, now I don't worry so much. I once had my UC go into remission almost spontaneously, and it lasted a while, but ultimately, I was back at square one after some time. I knew, for me, it wasn't going to be so simple. I was in an 18 month flare that left me scared to leave the house. I wasn't willing to give up more of my life. Consistency with a pouch varies, sometimes it's liquid, sometimes it's like pebbles, sometimes it's somewhere in between. I don't have issues with vitamins. The majority of absorption occurs in the small intestine, which we have. My bones are fine, probably weaker than they should be from past pred use unfortunately.

I wouldn't worry about surgery. It's probably under 20% of people who need it, and there are more meds available all the time.
Posted 4/1/2018 10:08 AM (GMT -7)

notsosicklygirl said...
In those cases, I am not sure if it's UC and Crohn's, or a misdiagnosis, or development of Crohn's after colon removal for some reason. The scary part is that it is a bit of a mystery. At the same time, people who deal with these situations often find it easier to manage regardless. Look at ks1905 here, he has pouchitis, which is now being called "crohn's", and he lives much better treating that with his pouch vs living with active UC throughout his colon. While surgery is not perfect, for me, I'm in my third year since, and things are much more predictable. No one knows what the future holds. With UC, I knew I lived each day with a ticking time bomb, now I don't worry so much. I once had my UC go into remission almost spontaneously, and it lasted a while, but ultimately, I was back at square one after some time. I knew, for me, it wasn't going to be so simple. I was in an 18 month flare that left me scared to leave the house. I wasn't willing to give up more of my life. Consistency with a pouch varies, sometimes it's liquid, sometimes it's like pebbles, sometimes it's somewhere in between. I don't have issues with vitamins. The majority of absorption occurs in the small intestine, which we have. My bones are fine, probably weaker than they should be from past pred use unfortunately.

I wouldn't worry about surgery. It's probably under 20% of people who need it, and there are more meds available all the time.

Thank you for all the info and patience! This thing is really scaring me. Though this diet Im trying is working miracles. Despite the fact that I'm not having any urgencies anymore, bloodworks are getting consistently better. I, many times, had my doctors saying my high cholesterol was chronic and there's nothing I could do about it, just take meds for the rest of my life. I tried exercising and some diets, but nothing worked... so far. Now with this new one cholesterol level are down back to almost normal (LDL is 197... it should be less than 190). So I'm really close succeeding in something doctors said wouldn't ever be fixed without meds. It all scares the hell out of me and it's good see you're living a good life out there, even after such a major surgery.
Posted 4/1/2018 11:13 AM (GMT -7)
Marcell and NSSG,

Hijacking your thread. For me.....I suddenly started vomiting and going to the bathroom. It took a while but I started out diagnosed with UC. I thought that worse case scenario I would get a jpouch. My blood work and colonoscopy showed very slight inflammation but nothing else. Within 6 months from the UC diagnosis I developed fistulas and Crohns was added to the mix. Things moved south very quickly for me and we could not get anything totally under control. I ended up with a colostomy. I still have my rectum and they have indicated that if things settle down they can reconnect. At the time of surgery they were not sure if even a colostomy would help...but they were hopeful. I am better than I was but not in remission. I take Remicade, methotrexate and prednisone along with supplements. They test everything every 6 weeks so we can make adjustments. My vitamins and bone density are good.

I empty my bag several times a day....but it is better than it was. The colostomy allows me to stay cleaner. (Before I had accidents several times a day) I have most of the "extra" symptoms of Crohns....but the quality of my life is better than it was.

I have several friends that started out with mild Crohns and they still have mild Crohns.... So there are no guarantees. Just research and prepare yourself for anything and everything. The group here are supportive and knowledgeable.

Best of luck to you!
Clo
Posted 4/1/2018 11:31 AM (GMT -7)

clo2014 said...
Marcell and NSSG,

Hijacking your thread. For me.....I suddenly started vomiting and going to the bathroom. It took a while but I started out diagnosed with UC. I thought that worse case scenario I would get a jpouch. My blood work and colonoscopy showed very slight inflammation but nothing else. Within 6 months from the UC diagnosis I developed fistulas and Crohns was added to the mix. Things moved south very quickly for me and we could not get anything totally under control. I ended up with a colostomy. I still have my rectum and they have indicated that if things settle down they can reconnect. At the time of surgery they were not sure if even a colostomy would help...but they were hopeful. I am better than I was but not in remission. I take Remicade, methotrexate and prednisone along with supplements. They test everything every 6 weeks so we can make adjustments. My vitamins and bone density are good.

I empty my bag several times a day....but it is better than it was. The colostomy allows me to stay cleaner. (Before I had accidents several times a day) I have most of the "extra" symptoms of Crohns....but the quality of my life is better than it was.

I have several friends that started out with mild Crohns and they still have mild Crohns.... So there are no guarantees. Just research and prepare yourself for anything and everything. The group here are supportive and knowledgeable.

Best of luck to you!
Clo

That was extreme, I see. Yeah what will happen is not guaranteed. We can either get better or worse for no explainable reason. But still, it's so frightening.
Posted 4/1/2018 1:05 PM (GMT -7)
No worries about hijacking my other thread. I asked for you to move it here because I wanted to ask my own questions about surgery, because I'm strongly considering it right now. I want to get rid of this nightmare organ!!! It is ruining my life!!!

Questions...

How are your food tolerances now? Can you eat whatever you want? I mean, I know having an ostomy limits certain food choices in that sense, but I mean... the food allergies themselves, did they calm down once your colon was removed? I dream of the day that I can eat gluten again. If surgery could guarantee a return of gluten and dairy to my life, that alone would be worth it. I miss good food so badly.

Is your immune system stronger or more normal now or do you still have "auto-immune"? One thing I notice big time is that since I developed IBD I catch colds very easily. Any change in that department after colectomy?

How long does it take the j-pouch to adapt to being a new rectum? Is there a lot of incontinence in the first couple of years? How often does the average person go to the toilet after all the healing is said and done?

I really miss traveling and I really miss eating. Those would be the two things I'd hope to get back after surgery.
Posted 4/1/2018 1:51 PM (GMT -7)
"I really miss traveling and I really miss eating. Those would be the two things I'd hope to get back after surgery."

so what are you waiting for - the most common reaction from folks on this forum who had surgery was > >

"wish i had done it sooner !"
Posted 4/1/2018 2:00 PM (GMT -7)
Thanks for responding clo. I am happy you're doing well.
Posted 4/1/2018 2:22 PM (GMT -7)

Chiron said...
No worries about hijacking my other thread. I asked for you to move it here because I wanted to ask my own questions about surgery, because I'm strongly considering it right now. I want to get rid of this nightmare organ!!! It is ruining my life!!!

Questions...

How are your food tolerances now? Can you eat whatever you want? I mean, I know having an ostomy limits certain food choices in that sense, but I mean... the food allergies themselves, did they calm down once your colon was removed? I dream of the day that I can eat gluten again. If surgery could guarantee a return of gluten and dairy to my life, that alone would be worth it. I miss good food so badly.

Is your immune system stronger or more normal now or do you still have "auto-immune"? One thing I notice big time is that since I developed IBD I catch colds very easily. Any change in that department after colectomy?

How long does it take the j-pouch to adapt to being a new rectum? Is there a lot of incontinence in the first couple of years? How often does the average person go to the toilet after all the healing is said and done?

I really miss traveling and I really miss eating. Those would be the two things I'd hope to get back after surgery.

I eat everything, probably more things than I should. Sweets, candy, bread, cocktails, fish, salads, shellfish, literally everything (except jello, hah). I know certain foods slow output, which can be nice, like potatoes, but I don't go around loading up on potatoes to avoid going an extra time each day if that's what it comes to. A lot of people take imodium quite often after surgery, my surgeon said some pouchers like to "fine tune" things, but I personally don't get too caught up in it. I go when I go, and I don't worry too much about consistency, or # of times. I just go when I pee. I never felt like my problems were due to a food allergy or intolerance. Certain foods may have aggravated symptoms, but they didn't cause my colon issues, and now without a colon, they don't cause me any issues at all.

The one thing I hate is if I get up in the night, and many nights I do. Sometimes I will be up anyway and figure I might as well go, but there are times I get up to go, and it makes for a less restful sleep. I am a very light sleeper, and I never get many hours straight, never have, and a j-pouch doesn't necessarily help. I was up all the time with nocturnal BMs with UC, and that would keep me up repeatedly, and for long periods. At least if I get up to empty, it takes literally a moment. If I eat earlier, I can avoid getting up, but it's not always possible to eat early, nor am I willing to change my entire schedule, so I deal with the repercussions.

I never had incontinence. No one can tell whether you would deal with that, maybe a surgeon if you went on a consult. I have heard it can be common shortly after surgery, but since surgery I've always had a very good ability to get to the bathroom. Immediately following takedown was tough, I was going a lot, and I didn't know if it was gas or a BM. I would have to go to the bathroom for everything. The gas was not comfortable for a few weeks, probably just normal healing, but kind of bloating and painful. All that is in the past now. I feel like I am overall my health probably a bit stronger. I may have had one or two minor colds since surgery. I am sure my immune system isn't as strong as a normal person's, but I don't get sick like I did on the medications. I think the average j-poucher goes 6x-8x a day.

That's all my perspective though, people have all different experiences. Younger people tend to heal faster and go less. I was in my 30s, probably a fairly average age to have the surgery, but I've heard of people very young, and much older having this surgery.

j-pouch.org is a site with all pouchers. If you're really considering it, you should go over there and research. Also, taking small steps now to ensure you're a good candidate, is better than waiting until it's emergency. Go on some consults, find a surgeon you feel comfortable with, ask tons of questions, make sure your expectations are realistic... We can help you get a list of questions together, or you can search or ask on j-pouch.org. With this surgery, you want a very experienced surgeon. # of procedures performed is an important statistic. Get imaging done to get a very clear diagnosis. One of the big items is fertility, surgery can reduce a woman's ability to get pregnant.

Sorry this is so long. I really do hope you start feeling better & that you can put UC in the background for a very long time (or for good - we all hope for that!)
Posted 4/1/2018 5:28 PM (GMT -7)
Thanks for that well thought out reply, it was nice of you. It sounds like food intolerances were never an issue for you. They are huge for me. I need to ask some other people with ostomies and j-pouches if their food sensitivities went away. Seriously, if I could regain most of my diet and never worry about losing it again, that alone would sell me on surgery... but I also know there are risks, like pouchitis. It would be really awful to get through all the surgeries only to get UC in the pouch. I guess at that point you'd just get a permanently ileostomy.

I'm not ready to dive into surgery just yet, but I am very close. UC has destroyed my spirit and my body just won't cooperate. I need to move on with my life. A bag sucks but surely it has to be better than the disease itself!
Posted 4/1/2018 5:44 PM (GMT -7)

Chiron said...
Thanks for that well thought out reply, it was nice of you. It sounds like food intolerances were never an issue for you. They are huge for me. I need to ask some other people with ostomies and j-pouches if their food sensitivities went away. Seriously, if I could regain most of my diet and never worry about losing it again, that alone would sell me on surgery... but I also know there are risks, like pouchitis. It would be really awful to get through all the surgeries only to get UC in the pouch. I guess at that point you'd just get a permanently ileostomy.

I'm not ready to dive into surgery just yet, but I am very close. UC has destroyed my spirit and my body just won't cooperate. I need to move on with my life. A bag sucks but surely it has to be better than the disease itself!

I don't think that intolerances can be resolved by removing a colon. Most likely because they're not due to UC itself but to something else.
Posted 4/1/2018 6:11 PM (GMT -7)
notsosickly....you mentioned that after your operation, you go more often. Does that mean you have that sudden 'urgency' to go, or you just feel the need to 'go'?
Posted 4/1/2018 8:13 PM (GMT -7)
It's more like how it was before UC. You feel like you need to go, but you can wait. It's not urgent like it is when you're inflamed. At the same time, the pouch doesn't have the same capacity as a colon, and it doesn't absorb as many fluids, so you can wait, but you may not want to wait hours. You can wait quite a while though. When I was a kid, I would wait ALL day literally, not so much anymore...

I agree with marcell, i don't think a food intolerance would change. For me, I can eat everything because I could eat everything preUC.

The bag has ups and downs. I think if I still had my end ileostomy, I'd be perfectly fine right now. I'd probably be at a point where I was used to it, and I was on a schedule and I knew exactly what to expect. A loop, I couldn't live with from my experience. Mine was just too difficult.

Definitely don't let your spirit be destroyed. So many times I've thought I was hopeless, and things have turned out okay. They will for you too. Keep your chin up, keep doing what makes you happy, and most importantly, live your life fully.
Posted 4/1/2018 8:23 PM (GMT -7)

notsosicklygirl said...
It's more like how it was before UC. You feel like you need to go, but you can wait. It's not urgent like it is when you're inflamed. At the same time, the pouch doesn't have the same capacity as a colon, and it doesn't absorb as many fluids, so you can wait, but you may not want to wait hours. You can wait quite a while though. When I was a kid, I would wait ALL day literally, not so much anymore...

I agree with marcell, i don't think a food intolerance would change. For me, I can eat everything because I could eat everything preUC.

The bag has ups and downs. I think if I still had my end ileostomy, I'd be perfectly fine right now. I'd probably be at a point where I was used to it, and I was on a schedule and I knew exactly what to expect. A loop, I couldn't live with from my experience. Mine was just too difficult.

Definitely don't let your spirit be destroyed. So many times I've thought I was hopeless, and things have turned out okay. They will for you too. Keep your chin up, keep doing what makes you happy, and most importantly, live your life fully.

Yeah. For me dealing with the colon was never an easy mission. I was constipated (I still am). When you're constipated you have a bad mood and a weird feeling in the gut. After colitis started I felt kind of relieved because even though D. is bad, being constipated can be worse. Now I'm getting better, then come back to normal, which means constipated, then I have to force a bit more, then when it comes, it comes with what is older and what is still being sucked by the bowel. Can't say that is a very pleasant. When it happened I thought it was D., but D. doesn't look like that, nor does a colitis attack. So a disfunctional bowel can be very frustrating. Anyway, what would worry me more would be the pain after surgery. I could get used to go to the toilet 6 times a day... but that pain, being a majour surgery... man, I don't know if I could take it. How's the pain after surgery?
Posted 4/1/2018 8:32 PM (GMT -7)
The pain after surgery is not easy, but it's not the end of the world. If i did it, anyone can.

The reality is, surgery is really need based, and you probably don't even need to think about it at this point. I think it's wonderful that you're curious and learning, but you can live very well with UC once you find what works for you. We are all here to help you figure it out too smile
Posted 4/1/2018 9:05 PM (GMT -7)
Please remember that I have aggressive, severe fistulizing Crohns. So my experience will probably be one of those "worse case scenarios" and it will probably scare you. Remember....very few people have the issues I have had. My GI said I am in that 1% range so don't let me or my story scare you. He has been the director of many GI departments across the US. He is a specialist. He has been doing this for over 25 years. He said I have the worse case of Crohns he has ever seen. My CRS...same thing. They work with the Mayo Clinic to help me receive the best care possible. So when you read this remember to think...this does not happen to very many people...less than 1%...

Prior to my colostomy I could not eat any dairy or fruits, and I had to be very careful with gluten and vegetables. I could not eat out. I usually ate grilled chicken breast, plain boiled potatoes and canned green beans. Now I can eat pretty much anything...although jalapenos can cause me issues. (But they did pre UC/Crohns) There are some foods that make my output thicker (potatoes, peanut butter, marshmallows, bread, bananas..) And some that make it thinner (jalapenos, hot sauce, tomatoe based sauces, apple sauce, grape juice, diet soda and soda.) So I watch my diet and balance it out. For example....if I eat pretzels I usually drink some diet soda or regular soda... If I eat a lot of meat I usually make a yogurt jalapeno dip to put on the side of it... I can eat out at restaurants. Every day I eat zuchinni. Its the one food item that keeps everything moving smoothly. I can eat salads now...although I am very careful. I chew chew and chew some more. Each bite is chewed 50 times. My CRS said that his people that follow that rule usually do not have obstructions... and it only takes 1 partial obstruction with an ostomy to learn your lesson. I ate thin crust pizza today....Oh my..... (But pizza crust has to be watched as it causes obstructions)

I empty my bag every time I urinate during the day, 1 time before I go to bed and when I wake up for my 3 am bathroom break...I empty it again even if it does not have very much in it. (CRS said to empty each time you urinate and before bed and you will have fewer blowouts...it has been almost 2 years for me and very few blow outs..)

Incontinence....I had it....all the time... No control plus fistula that leaked. Now the bag makes things so much cleaner. I still have a very leaky fistula. I still take multiple showers daily because of the fistula...but at least I am not running down the hallway leaving a trail. (Sorry for the graphics but true)

I felt amazing after surgery. Yes I was sore, yes I had surgery pain, but that awful feeling of "oh no I am going to puke" was just gone. That feeling that is and yet isn't quite nausea. And the constant abdominal pain was so much better. I had a couple of set backs but 48 hours after surgery I ate a chicken tender, mashed potatoes, green beans and cheesecake..with real cherries on top.

Challenges with an ostomy.... I had skin irritation from my wafers. I developed a circle bruise around my stoma. By working with my CRS and Stoma nurse we finally found products to use. Forgetting I have a stoma and bumping it on things.... It can make noise and you can not control it. Sometimes it is a stomach gurgle sound, rumbling/talking sound or a fart sound-and you can not control it. You just put your hand over it and muffle it...lol.. The smell of the out put is awful BUT they make M9 deodorant to put in your bag and that helps a lot. (We can't smell anything as long as I use M9) Too thin or thick output....which is directly related to water/fluid intake and balancing your diet.

Prior to surgery....go to a good..really good GI specialist and make sure you have UC or Crohns. If they suspect you of having Crohns...personally...I would not have pouch surgery. Crohns can happen anywhere and you need to save as much as you can. Most doctors won't do the J pouch if they suspect you might have Crohns. Also a good...very good Colorectal Surgeon is a must. Someone that works with IBD patients and has many surgeries under their belt. A cancer CRS will not have the same experience/knowledge base as an IBD CRS. Go see the stoma nurse. She can show you where the bag would be for your type of surgery. Make sure you are comfortable with the location. Ask your GI and your Colorectal surgeon for patients you can speak to.

I agree with what NSSG said and 100% agree with TroubledTurds... I do not know why I held off for so long. If I had known I would have had it done sooner. But please remember my quality of life was really really awful. I was sleeping on plastic, wearing diapers and still having accidents. I could tolerate one meal and yet I was still having uncontrollable vomiting throughout the day. The pain and nausea could not be controlled with any medication. Now medication can control nausea and pain some of the time... I can eat pretty much anything....but my meds and the disease make me sleep the majority of the time.. I still have Uncontrollable fatigue and brain fog. I still have to take multiple showers daily to clean the fistula leakage. I have arthritis now and have a difficult time moving...and Uveitis causes vision issues. Then there are mouth sores and skin issues... It sounds bad....but it was so awful before that it makes all this look bearable.

I hope you get your UC under control and that it is a mild form. Remember...research, research and research.

And we are here....the IBD warriors.....waiting to help others...

Clo
Posted 4/2/2018 8:43 PM (GMT -7)

clo2014 said...
Please remember that I have aggressive, severe fistulizing Crohns. So my experience will probably be one of those "worse case scenarios" and it will probably scare you. Remember....very few people have the issues I have had. My GI said I am in that 1% range so don't let me or my story scare you. He has been the director of many GI departments across the US. He is a specialist. He has been doing this for over 25 years. He said I have the worse case of Crohns he has ever seen. My CRS...same thing. They work with the Mayo Clinic to help me receive the best care possible. So when you read this remember to think...this does not happen to very many people...less than 1%...

Prior to my colostomy I could not eat any dairy or fruits, and I had to be very careful with gluten and vegetables. I could not eat out. I usually ate grilled chicken breast, plain boiled potatoes and canned green beans. Now I can eat pretty much anything...although jalapenos can cause me issues. (But they did pre UC/Crohns) There are some foods that make my output thicker (potatoes, peanut butter, marshmallows, bread, bananas..) And some that make it thinner (jalapenos, hot sauce, tomatoe based sauces, apple sauce, grape juice, diet soda and soda.) So I watch my diet and balance it out. For example....if I eat pretzels I usually drink some diet soda or regular soda... If I eat a lot of meat I usually make a yogurt jalapeno dip to put on the side of it... I can eat out at restaurants. Every day I eat zuchinni. Its the one food item that keeps everything moving smoothly. I can eat salads now...although I am very careful. I chew chew and chew some more. Each bite is chewed 50 times. My CRS said that his people that follow that rule usually do not have obstructions... and it only takes 1 partial obstruction with an ostomy to learn your lesson. I ate thin crust pizza today....Oh my..... (But pizza crust has to be watched as it causes obstructions)

I empty my bag every time I urinate during the day, 1 time before I go to bed and when I wake up for my 3 am bathroom break...I empty it again even if it does not have very much in it. (CRS said to empty each time you urinate and before bed and you will have fewer blowouts...it has been almost 2 years for me and very few blow outs..)

Incontinence....I had it....all the time... No control plus fistula that leaked. Now the bag makes things so much cleaner. I still have a very leaky fistula. I still take multiple showers daily because of the fistula...but at least I am not running down the hallway leaving a trail. (Sorry for the graphics but true)

I felt amazing after surgery. Yes I was sore, yes I had surgery pain, but that awful feeling of "oh no I am going to puke" was just gone. That feeling that is and yet isn't quite nausea. And the constant abdominal pain was so much better. I had a couple of set backs but 48 hours after surgery I ate a chicken tender, mashed potatoes, green beans and cheesecake..with real cherries on top.

Challenges with an ostomy.... I had skin irritation from my wafers. I developed a circle bruise around my stoma. By working with my CRS and Stoma nurse we finally found products to use. Forgetting I have a stoma and bumping it on things.... It can make noise and you can not control it. Sometimes it is a stomach gurgle sound, rumbling/talking sound or a fart sound-and you can not control it. You just put your hand over it and muffle it...lol.. The smell of the out put is awful BUT they make M9 deodorant to put in your bag and that helps a lot. (We can't smell anything as long as I use M9) Too thin or thick output....which is directly related to water/fluid intake and balancing your diet.

Prior to surgery....go to a good..really good GI specialist and make sure you have UC or Crohns. If they suspect you of having Crohns...personally...I would not have pouch surgery. Crohns can happen anywhere and you need to save as much as you can. Most doctors won't do the J pouch if they suspect you might have Crohns. Also a good...very good Colorectal Surgeon is a must. Someone that works with IBD patients and has many surgeries under their belt. A cancer CRS will not have the same experience/knowledge base as an IBD CRS. Go see the stoma nurse. She can show you where the bag would be for your type of surgery. Make sure you are comfortable with the location. Ask your GI and your Colorectal surgeon for patients you can speak to.

I agree with what NSSG said and 100% agree with TroubledTurds... I do not know why I held off for so long. If I had known I would have had it done sooner. But please remember my quality of life was really really awful. I was sleeping on plastic, wearing diapers and still having accidents. I could tolerate one meal and yet I was still having uncontrollable vomiting throughout the day. The pain and nausea could not be controlled with any medication. Now medication can control nausea and pain some of the time... I can eat pretty much anything....but my meds and the disease make me sleep the majority of the time.. I still have Uncontrollable fatigue and brain fog. I still have to take multiple showers daily to clean the fistula leakage. I have arthritis now and have a difficult time moving...and Uveitis causes vision issues. Then there are mouth sores and skin issues... It sounds bad....but it was so awful before that it makes all this look bearable.

I hope you get your UC under control and that it is a mild form. Remember...research, research and research.

And we are here....the IBD warriors.....waiting to help others...

Clo

So does it really smell and farts without control?
Posted 4/3/2018 12:00 PM (GMT -7)
Smell...mine does without M9. With the M9...nada. (M9 is a liquid, you place 5 drops in your ostomy bag and it absorbs the smell. I know that if I forget the M9 and empty my bag..it will wake my spouse up from a dead sleep. My friend does not have to use M9. She said it smells like a normal persons. It is different for everyone.

Farts...passing gas...oh yes. It also makes this grumbling old man talking sound. I just put my hand on it and muffle it..but that's after it has already let out some ki d of noticeable noise. It does not happen much to me...so its not a big deal.

Don't freak out about this disease. The majority of people are able to get it under control with medication.

Clo
Posted 4/3/2018 2:21 PM (GMT -7)

clo2014 said...
Smell...mine does without M9. With the M9...nada. (M9 is a liquid, you place 5 drops in your ostomy bag and it absorbs the smell. I know that if I forget the M9 and empty my bag..it will wake my spouse up from a dead sleep. My friend does not have to use M9. She said it smells like a normal persons. It is different for everyone.

Farts...passing gas...oh yes. It also makes this grumbling old man talking sound. I just put my hand on it and muffle it..but that's after it has already let out some ki d of noticeable noise. It does not happen much to me...so its not a big deal.

Don't freak out about this disease. The majority of people are able to get it under control with medication.

Clo

I am freaking out. Mainly because of steroids, that could lead to worse conditions.
Posted 4/3/2018 4:45 PM (GMT -7)
Smell is only an issue when you empty. The whole system is closed, so you do not smell regularly. The smell when you empty can be quite pungent. Sometimes it will literally smell like the rotten version of whatever it is you ate. hehe. You should start reading about happy, nice things. You're going to get your mind all stressed.

The noise stuff is interesting. I never really had a situation where it happened in a quiet room. When you're out in public, there is usually music, or background noise, no one would hear it over even a minimally noisy setting. If you were in a quiet conference or something though, and it made noise, the person next to you might think you farted.
Posted 4/3/2018 7:57 PM (GMT -7)
Marcell,

The smell only happens when you empty. The steroids...you never know. I will say...research everything and try not to worry. (Easier said than done) And finally your outlook, trying to remain positive, it will help you so much. I have to admit at first I was freaked out about all of this too so I understand where you are coming from.

NSSG,
I was buying glasses....very quiet upscale shop..when it sounded like my stoma (in a very gravely voice) said "help me". The young college man helping me ran across the room and I laughed so hard I could not breathe... OMG...his face...eyes as big as saucers...lol.. I took him aside and apologized and explained about my stoma. Wouldn't you know I would get the only premed guy-and he would beg to see it... Interesting afternoon.

Clo
Posted 4/3/2018 10:07 PM (GMT -7)
Have you all seen anyone with pancolitis and no extreme symptoms? Because my symptoms now are mild. No blood. No urgency. No mucous. Last year was bad. I had a very strong pain in the rectum while I was in the subway. Almost crap my pants right there. And I would feel a lot of pressure to go to the toilet almost every day. I was worrying about PSC. Quincy thinks I shouldn't. So O was looking for signals, like rectum sparring (no), mild symptoms/clean colon despite bad biopsies (now yes), pancolitis (yes), backwash ileitis (I don't know. I have a hyperplasia in the ileum that can have many reasons to be there). So nothing's really clear and at the same time I'm happy for not being in such a bad situation, I'm worried with the possibility of PSC in the future (checked and now I don't have it). Besides, if things go south, I wouldn't like to take steroids. And as I have HPV, imunosupressors can be a bad idea. So have you seen anyone with pancolitis and mild symptoms at any moment, without meds?
Posted 4/4/2018 5:39 AM (GMT -7)
Marcell, it sounds like you have a lot of health anxiety and although it's good to learn about UC it can driveup anxiety within us. The best suggestion I can give you is that there is a solution for everyone, no matter how their UC ultimately turns out. Even in the unlikely even you need surgery (75% of patients do NOT need surgery, and only 25% do) then you will have a good quality of life, pursue your hopes and dreams, have a family, a successful career, and enjoy your hobbies and interests. Surgery doesn't make you 100% like before UC happened, but it does give you control of your bowels and predictability (something unending UC flares do not). After UC surgery there might have some mild inconveniences (weird noises, etc.) however that is very, very minor compared to the misery of unending flares and UC give us when it cannot be controlled.

The prognosis for UC can be unpredictable. Some of us have a very mild case of UC that uses only the mildest medications for decades without a lot of trouble. Some of us have moderate cases of UC that are a lot more trouble and require escalation to much stronger meds. Some of us nothing works and surgery quickly finds us (20% of folks). Nobody knows which course their UC will follow. Some start mild and stay mild their whole lives. Some start mild and progress to severe cases. Some start and stay severe.

Regarding PSC, if you don't already have PSC then you have only 4% odds of aquiring it now. The majority of people had PSC and LATER developed UC. Very rare to start with UC and THEN get PSC.

"An autoimmune mechanism is suggested, because approximately 75-90% of patients with PSC have inflammatory bowel disease (IBD). However, only approximately 4% of patients with IBD have or develop PSC. "
Source:/emedicine.medscape.com/article/187724-overview#showall

If you're worried about your UC getting worse over time then I cannot stress enough that you need to take a maintenance medication like oral asacol/mezavant. Clinical studies have shown that those who take a maintenance medication have the longest remissions, least frequent and mild flares, and the least odds of their UC progressing into a more severe case.

Are there some with pancolitis who take no medications? Sure. Are there many? No. The vast majority of UC patients require maintenance medications, and the odds state you will likely too. I always go with what the odds say will happen, rather than hoping that you will be one of the small minority who break from the majority and are lucky (outliers). I'm sure every boy wants to be a professional sports player when he grows up (soccer, baseball to name a few) but there's only a very slim amount who actually do.
Posted 4/4/2018 7:42 AM (GMT -7)
Hi Marcell, I am writing because I have a J-pouch and PSC. I had severe pancolitis that did not respond to medicine. The surgeon described my colon as looking like a bomb went off inside. I don't post much because I am living my life. Am I the same as I was before UC and having a j-pouch? No I am not, but any inconvenience with my j-pouch is nothing compared to what I went through with UC.

If you don't have PSC I wouldn't spend time worrying about it. I was diagnosed after my j-pouch surgery. Who know whether I had PSC first then UC, it doesn't matter to me because it doesn't change the diagnosis. The initial diagnosis scared me only because I had a baby (yes after J-pouch surgery) and I was afraid I wouldn't be here to watch her grow. Now, I know a lot more about PSC. Yes it has to be monitored and yes I might someday need a liver transplant, but what good does that do me to worry about that today? The worst problem I have with it today is itching but it can be managed.

I agree with iPoop it is good to have an understanding of your medical issues, but you can make yourself crazy doing so. Focus on the good and what you can control.

Take care!
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