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Posted 4/7/2013 11:00 AM (GMT 0)
SOOO i kind of feel like i'm delaying the inevitable. I'm steroid refractory, mesalazine, azathioprine do not work either. The only medicine that works at the moment is infliximab. I feel like i'm pumping my body full of toxins waiting for the infliximab to stop working and then theres not really another option to having surgery anyway.

Basically I'm scared of the bag, I'm 22 and I want a normal life. I have a gorgeous boyfriend and I'd be terrified of what he thought of my bag!Whenever i mention it's a possibility he is like noooo. he can just about accept that i've got UC and i'll be sick every now and then but i don't think he really understands what it is. I don't think he's done his own research just listened to what i've told him. I feel guilty talking about it so much, he doesnt understand and i feel doesn't really listen or want to listen about my constant bad health. Part of me just wants surgery so I dont have to keep talking about UC. I'm worried everytime I go to the bathroom even during remission that it will come back/be worse.

I'm interested in J-Pouch. Has anyone gone through this sucessfully??? what does it intail? what is the quality of life like after surgery. Is there urgency/accidents?
Posted 4/7/2013 11:58 AM (GMT 0)
I can understand your apprehension with the subject! I would think positively though. Remember, there are many on this forum (and thousands off this forum) that have maintained remission with a biologic for years on end. There are a few new safer biologic meds in the pipeline awaiting FDA approval that have been incredibly successful in early trails. Sounds like you were med free for a while and that potentially could have caused an increase of severity of your second flare. What are your symptoms now? Are you still on Remicade? Have you considered rectal medications?

As long as you are feeling good, your apprehension should die down. Often times, you can flare on biologics, but they lessen the severity of the flares and make them manageable. If Remicade begins to fail you completely, there are other options (Humira, Fecal Transplants, etc).

I know all this is all exhausting, and many people often regret not pursuing surgery earlier. There are many on this board that have successfully had J-pouch operations (I believe the success rate of the operation UCers is well over 90%). It's certainly worth looking into at jpouch.org.

-Andy
Posted 4/7/2013 12:03 PM (GMT 0)
I'm sorry your boyfriend isn't being supportive. Life is full of hard times and you're always going to need support. :(
Posted 4/7/2013 12:45 PM (GMT 0)
Heya thank you for replies!! :)

I have only ever had 3 infliximab infusions first in noember 2012, the last in january 2013. which worked well for me and induced and kept me in remission, they were supposed to bridge the gap for azathioprine to start working. However azathioprine didn't do its job for me and I started flaring again over a week ago. I am due to start regular infliximab next week i believe, but i am aware it will stop working eventually.

I was med free for a year after my first flare up, but first sign of second flare i was on the prednisolone and mesalazine and pentasa enemas which didn't work for me. Only infliximab got me into remission.

I do hope they develop more biologics that will keep me well. Its so difficult dealing with this alone, no one understands how worrying it is to have a lifelong illness. I have no contact with either of my parents as they are unfit and having them in my life causes more anxiety and makes my UC more likely to flare worse. I live alone in the middle of city of london. Its pretty lonely. I don't have anyone to talk to about anxieties about how sick i'm getting or keep an eye on me. I feel guilty talking to boyfriend or friends at school about it, as I can unknowingly rant for hours about how awful it is to be on steroids, or how scared i am of immunosuppressants and all they want to talk about is anything other than my illness.

I feel totally alone. And I am beginning to feel maybe I should just get the J-pouch and cure myself and put this behind me
Posted 4/7/2013 1:45 PM (GMT 0)
I had jpouch surgery 12 years ago, best decision of my life, no regrets here. You can meet more jpouchers at the HW ostomy forum or at www.j-pouch.org. There are not too many of us in the UC forum.

Sue
Posted 4/7/2013 2:22 PM (GMT 0)
I wass a few months shy of 22 when I got sick. I wasted all of my 20s with uc, and finally had surgery when I was 29. I chose a bag, it seemed like the best thing for me. And I am, hands down, the most vain and shallow person in the world :)
Honestly though, don't let that idea keep you away, and if your bf isn't supportive of that idea now, how is he going to be when a flare land you in the hospital? Or any of the other not so fun things that come with real life?
Posted 4/7/2013 2:26 PM (GMT 0)
i bet in a year that bag will be a lot better looking than that bf !
Posted 4/7/2013 2:59 PM (GMT 0)
I had j pouch surgery almost 3 years ago and it's a total success. Not one single regret! It's a tough surgery(s) to get through but totally worth it.

I hope your boyfriend gets on board with you on all this because it helps to have support from your loved ones. He needs to understand that if you are going to do this, it's so you won't be sick anymore.

Please feel free to ask any questions about the procedure and I will be happy to try and answer them for you.
Posted 4/7/2013 3:21 PM (GMT 0)
I just had step 1 surgery this week after more than 10 years of suffering, trying every med, and becoming steroid dependent. I plan to have the j pouch done as soon as doc oks it, but truly, even if I had to live w this bag forever (I am 41 now), the surgery has already given me my life back. Best decision I could have made. As for the boyfriend, you need a good support system in dealing w this disease, whether you choose surgery or not. I spent a lot of time in the hospital or sick at home, and my husband was my lifeline and I needed his complete support. Sorry to be blunt, but a good looking guy who doesn't support you is not worth it.

Alison, age 41, 10 + years of UC
Step 1. Colectemy 4/2/13
Step 2 j pouch planned June 2013, w takedown in August
Posted 4/7/2013 3:25 PM (GMT 0)
Haha aaaw you guys are the best! thanks for all the replies! really appreciate it and your comments put a massive smile on my face!

I've been hospitalalized twice with UC first time for 6 weeks, second for 3 weeks. I know I have a severe case of UC. My boyfriend doesn't like to talk about my illness. I don't think he realizes how serious it is and how sick and tired I feel a lot of the time. He puts pressure on me to go out, and during a flare I feel so weak I can't. He doesn't understand how rotten the steroids I recently was on make you feel both physically and mentally but then when I try to explain he switches off.

I really don't see the relationship working. I was with him before I was diagnosed with UC and I think he just expects me to one day turn into the same person I used to be. I've explained to him that I can be "cured" with surgery and the illness worries me so much that I might be better off with bag. and then he just says no. he doesn't engage in conversations with me about UC, I feel like I am talking at him rather than to him. I'm scared about side effects of the big drugs I'm forced to take. He seems to think that one day I will get off the medication again because I was a year med free after first flare without symptoms. But i've explained that its either surgery or dangerous medication for life.

I am getting more and more drawn to the idea of surgery. My uncle who had UC had his entire colon removed and now lives with a colostomy bag, before he used to be sick all the time and was in and out of hospital. Now he has his life back he is the most chilled man I've ever met, and regularly goes on massive country walks and loooong drives. It's changed his life.

Summerstorm you made me laugh about living with a bag and being super vain. I think thats my biggest concern. I am a 22 female, I don't see how anyone would want to be with me if I had a bag. And the thought of not being able to wear belly tops in summer seems scary. But then living with this disease is too much for me. The best solution is to date someone else with UC however there aren't many of us out there!

I'm going to check out www.j-pouch.org

Does anyone know. If i opted for the j pouch surgery. How long would I have the bag for? and once I have the bag, providing there are no complications. what will my bowel habits be like. would i need to take more supplements? how is water absorbed? would i need to take something like diaralyte forever?

Many thanks to you all :) xxxx
Posted 4/7/2013 3:51 PM (GMT 0)
I thought he was a bit of a *** before I read this. I had no idea that he said this. I can confirm that your other brother doesn't like him because of the comment he made about ill people being put down because they go again natures survival of the fittest.

The fact that he thinks you should carry on suffering is proof enough that you should kick him to the curb. As everyone one says, he is punching above his weight with you.

Regarding your surgery, I think you have already made your mind up and that its a decision that you should be proud of. My God you just need to look at uncle Richard to see he doesn't have a care in the world (other than Yvonne maybe).

Love your twin brother ;)

Posted 4/7/2013 3:56 PM (GMT 0)
It's usually about 3 months between the surgeries but some people have to wait longer. It's also possible to have a 3 step procedure under certain circumstances, if this were the case, you would have the bag longer... I think it depends on the health of your colon and whether you're on steroids or have been recently.

I am sorry that your boyfriend doesn't care to learn more about the illness or understand your point of view but I get it, you're both young and having this illness is not fun. When I was 22, I hadn't even heard of UC, never mind dating someone who had it. It's probably difficult for him to understand but it would be nice if he made an effort.

jpouch is a very tempting option. I have thought about it as well. Being without UC completely would be amazing and you can get off all of the meds. The only thing that stops me is the fact that with a pouch, average people go 4-6x a day. That's the statistic I've seen and speaking with people who have a pouch makes me think it's more like 6-8x a day. No big deal really but for me, I go to the toilet about 1x a day (I am in remission). I also worry about getting up in the night to empty. The last thing that is very important is that you confirm with as close to 100% accuracy that you have UC and no possibility of Crohn's. If you had Crohn's, they wouldn't let you get a j-pouch and you would be stuck with a bag. Again, not the end of the world but something to be aware of.

Another thing to consider is whether you can financially take the time off to have the surgery. I personally can not. My insurance would only cover a portion too, I can't afford my portion or the time off from work. It's not an option for me.
Posted 4/7/2013 4:05 PM (GMT 0)
Here's a girl your age with a "bag" who blogs about her life. I do believe attitude and confidence make a huge difference - if you think it's gross and abnormal, you'll attract people who think the same. If you think it's fine, so will those around you. There are plenty of young people living good lives thanks to surgery. The great thing is, because of the internet, the stigma is really being broken thanks to them. Maybe you can do some research and connect with them? And, yes, your boyfiend is young and lucky enough not to know what being sick is like. If he's not willing to travel down this path with you, someone else will.
http://uncoverostomy.org/
Posted 4/7/2013 5:14 PM (GMT 0)
Everyone I've talked to that has had the surgery says its the best thing they did.. But lost of them suffered for years before surgery became the better option. I think surgery is a major thing to contemplate. If you feel that mentally you're able for the surgery then you should really research it and start talking it over with your docs. For me, surgery terrifies me, every aspect of it - even the surgery itself. I've seen the bags, seen the scars and there are difficulties after with infections and some people having had the j-pouch still go to the toilet 5-6 times a day. When people look back, its the best decision as they are better but during the process I can only imagine how hard it is. You need to weigh up both options. I'm not too bad at the moment but I've spent the past two years being terribly bad and on so much medication. I'm nearly 11 weeks off steroids this week so Im hoping the Humira is working. I've never even come close to remission. Like you, the Imuran did nothing for me on its own. I have been a bit bad this weekend but I think I may have picked up a stomach bug on Thursday so I hope it clears up! If not, I'm back to step one. For me personally, at the moment, I know I'm not ready for a bag mentally - I've quite low self-esteem and I am also quite vain (dreadful I know!). Thankfully I have a boyfriend has said he will stick by me either way. I know what you mean about feeling that you're alone though, I don't have many supportive friends and even the ones that are kind of supportive aren't prepared to listen to most of my UC talk or rants.. Nobody seems to care unless they have been through it or any type of illness. Some of my friends will purposely ignore anything i say about being sick or else compare it to more life-threatening diseases such as cancer. It has actually opened my eyes up to people who i had always thought were good friends. As you've achieved remission before, it could be possible that as little as a year of remicade could get you back into remission. You could try it a few more times and begin to research the surgery at the same time. The surgery decision is entirely up to each individual. Whichever route you decide, it is meant for you :-)
Posted 4/7/2013 5:57 PM (GMT 0)
I'm 26 now and had my first surgery in January, so I have a "bag" now (my nurse says we should say "pouch" instead because it sounds nicer, but then my friends get confused between the ostomy pouch and the j-pouch!). I'm definitely pretty vain too -- I worked out all the time before I got sick, wore revealing/tight clothes, etc. But by the time I had surgery, I had nothing left to be vain about -- I lost 40 lb from hospitalization and malabsorption, my skin was horrible and made me look 10 years older, never slept, lost hair in handfuls... Even though I have a pouch attached to me now, I look and feel 10000 times better!

I have to agree that your boyfriend sounds like a wank. I can sympathize about feeling guilty talking too much about UC, but you are already feeling bad enough -- you don't need someone in your life making you feel bad on top of feeling sick. There is still plenty of hope to find someone even with your pouch. I met my boyfriend after I had surgery and he is totally OK with the ostomy, it's awesome!

Because I was so sick when I had surgery I have to have three surgeries to get the j-pouch, so I will end up having my ostomy for about 6-7 months. At the time when I had my first surgery I thought that sounded CRAZY, like such a long time, but I'm about halfway through now and it really is no big deal. If anything I wish I could delay surgery because I'm so happy and active now, but I want to get the entire process over and done with so it isn't hanging over my head anymore.

I don't take any special supplements. If I have something dehydrating like coffee or alcohol I drink some Gatorade or coconut water afterward, but really even people with colons should do that :) My diet is the most normal it has ever been since I got sick. For the first couple of weeks after surgery I had to wake up once in the night to empty my bag (it's very easy, just unroll the bag, let it drain, wipe off the end, then go back to bed!), but now I sleep through the night (amazing!!!). No one knows about my bag except for people I have told -- you really cannot tell under my clothes. I wear an opaque bag now so even if someone caught a glimpse they wouldn't know what it was.

I know surgery isn't for everyone but it's probably the best thing that ever happened to me. I think I still post here because my friends are sick of hearing me talk about how happy I am! Whenever I sit down to a meal or sleep through the night or go out with my friends I always think "I never thought I would feel this healthy again!" Good luck!
Posted 4/7/2013 6:12 PM (GMT 0)
Hey Burdee - I echo everyone's sentiments that your boyfriend is not good enough for you. You disease is a fact of life for you. It's not "going away" - you'll always be doing something to control it. If he can't handle even talking with you, then he won't be able to handle the other things (ER visits, hospitals, Dr.'s trips, etc.). This disease IS exhausting. You don't need a boyfriend who has UC, you just need a boyfriend who is compassionate and understanding...who loves you no matter what!

I know you said you are going on infliximab, but there's also Humira (adaminulab sp?). If you are in the US, it's FDA approved for UC. It works very similar infliximab.

It sounds like you are in a place to go talk with a surgeon, just to learn about the procedure, be educated, etc. Have you talked to your GI about it? The most important thing about your surgeon is that he or she is an experienced jpouch surgeon. Going to talk with a surgeon do not mean that you are going to schedule surgery (although you can at that point if you want) - it's just to get you educated and to make contact with someone who can help you if you need it.

I have to say that I feel sooooo much better now that most of my colon is gone! Don't have my jpouch yet, but I'm working my way there.

Go visit http://www.girlswithguts.org for some inspiring stories about young women with IBD (there's even a story about some adorable children that unfortunately also had to deal with the same problems we do).
Posted 4/7/2013 6:55 PM (GMT 0)
Thank you everyone, feel quite emotional reading all your replies. Its so nice having so many people who truely understand and are willing to take the time to listen. I can relate totally to pluot, I am incredibly vein but this illness has ravaged me and I am losing anything to be vein about. I feel exhausted from the imuran, taking it at night doesnt help. My skin was ruined by steroids, my hair is falling out due to anaemia. At this point if a "pouch" will make me feel better physically i'm sure I can get over the stigma i have in my head.

I am extremely reassured by the number of you who have said it's the best decision you ever made.

Also Minners your story rings very true to me, during my last flare I wouldnt have even considered surgery. Any other option would be better, I am not a brave person at all. but now that azathioprine hasn't worked and I've got sick again after only a short time feeling "well" I am preparing myself for other options. I too am terrified and never thought I'd be the sort of person willing to make this decision. However I want my life back, at the moment with this disease its impossible to be certain or plan for future. I need some stability now.

You are all right, I cant let my boyfriend influence this decision. At the moment i'm staying sick and taking medicines I feel uncomfortable taking for him not myself. I deserve someone who will listen to me, and educate themselves about my condition and talk it through with me. At the moment he isn't supportive enough, its not his fault because he hasn't got experience with disease, however if he cant handle this it's impossible to have a future because surely it is only going to get worse without the surgery.

Even when I began this flare, when i told him my "tummy was playing up again" he was like oh for god sake not again. Not sympathetic at all. Hasn't been there for me, I mean it sounds silly but even when we've eaten meals and he's cooked I've asked him to take peels off potatoes and he doesn't. He doesnt understand and is unwilling to learn.

I have just left a telephone message for my GI dr for when he returns to work tomorrow to discuss surgery. I would still like to start the infliximab because I feel really unwell at the moment and I don't want that to influence my decision too much, however I am realistic and i know that infliximab and biologics will not keep me well forever and I have to look at the alternatives

Thank you everyone, your kind words mean the world and I will look at all the forums and links that have been posted :) xx
Posted 4/7/2013 8:45 PM (GMT 0)
You can always get the Stealth Belt if you don't want people to see the bag. That's what I intend to do if I go for surgery.
Posted 4/7/2013 10:42 PM (GMT 0)
Wow... My wonderful wife is gung ho for me to get "the bag"- she is sooooo supportive- makes it clear she thinks it will be cool, and not a turnoff to her at all. She had abdominal surgery (not IBD related, just scars) and I thought the scars were cool too, like badges of honor. Now she says I will be like the "bionic man". When you really think about it, the psychological terror against "the bag" is much like the way we cant talk anout our bowel problems to most normies- anything to do with poop is taboo. That's just a silly societal conventional that we simply have to get over with. In any case, most ostomates have the choice to never even let all but those they are intimate with even know about it. And most UCers can have a jpouch instead of a permanent ostomy- though neither option is without its pros and cons.
Posted 4/7/2013 10:56 PM (GMT 0)
i'm also steroid refractory, mesalamine intollerant. i started remicade (infliximab) two weeks ago and experienced amazing results thus far. like others have said i'm a little unsure why you assume it will fail, there are many who have had enormous success at attaining remission with the drug. some even go off of it and don't even use it as a means of maintenance. imho surgery should be an option when and only when you exhaust your options fully, if something like remicade is working then go day by day week and week and see how things go.


remicade for me induced bowel rest, something no other drug was capable of doing for three months. i was previously diagnosed with fully diffused level 3 severity UC with deep ulcerations a week before via colonoscopy, the following monday I started remicade and I thus far it's been nothing short of remarkable.
Posted 4/8/2013 12:00 AM (GMT 0)
Hi burdeboo,

I wrote a topic on my own experiences. I am currently on inflixmab (but for ank spon) and I had the complete surgery. (in 3 parts). My threads here: https://www.healingwell.com/community/default.aspx?f=38&m=2695223

I'll be blunt with you, because i wish someone was with me.

Get the surgery. There is one cure for UC, and it's to have the colon removed. The bag is temporary. 1 year max. After that you'll look back and be amazed at how bad you had it, compared to how great you are now.

I'm 20 and I haven't looked back since. I have an amazing girlfriend (who was with me through the bag might I add, and dealt with it amazingly) and a full time job i enjoy. I don't get held back my constant pains or constant toilet breaks anymore. It's great. I recommend the surgery.

It's scary i know, but it's worth it
Posted 4/8/2013 2:44 AM (GMT 0)
When I got sick I hadn't started dating my husband yet, but the guy I was with was supportive, even though we didn't talk about it. He just knew i had problems. He never wanted to go places anyway so it didn't really matter, lol. The next bf I had before my husband didn't really know about my problems, they hadn't gotten really bad yet so it wasn't hard to hide them from him, we didn't get to see each other a lot.
Then when my husband and i started dating I didn't tell him for a long time, but after about 6 months I ended up in the hosptial so he found out. Anyway he was always understanding, but he did get upset that we didn't get to do a lot of things like our friends were doing. I got upset too, I always felt like i was holding him back and I offered to leave him numerous times, he always told me to shut up and stop acting stupid, lol.
When I finally had surgery when i was 29 we started getting to do all the stuff we couldnt do then. Go to bars, go to clubs, go to concerts, on vacations all the fun stuff you are supposed to do in your 20s before you get married and have kids! We do have a son, which was my main reason for surgery, but he stays with my grandma a lot, she's like a kid thief, lol.
I really really really wish I had had surgery when I first got sick. It was never mentioned to me or I probably would have. Years of steroids making me fat, and ruining my skin and my hair and wrecking my bones.
When I went for my surgery consult my surgeon said he thought a bag was really the best way to go. And that's what I wanted. I said I was done, I wanted it over with. He uses me now as an example to his patients, he says a young, cute girl came in and asked for a bag, said she was done. And she is really happy with it. He says my story helps a lot of people.
If you go to photobucket.com and use crohnsdisease for the user name and 6mp3asa for the pw you can see some pics of us!
Posted 4/8/2013 2:51 AM (GMT 0)
Agreed with Summer. You'll feel like a different person after the surgery.
Posted 4/8/2013 5:04 PM (GMT 0)
Thank you for replies! I added my picture summerstorm! had a rotten day today, was first day back at uni after my Easter break since I've been flaring and had to run home at end of the day in agony.

Its ridiculous my dr just phoned and said that I need to come in for appointment tomorrow. But basically infliximab isn't licensed for maintenance of UC and I'd probably have to go on steroids again!! Even though steroids don't work for me!!! I basically said to him, theres no way in hell i'm going on steroids and if thats my only option take the bowel.

So frustrating!!! Why are people on this forum not maintenance infliximab, I feel awful and I can't have the medicine I need. Basically sat here crying my eyes out that i'm pretty much not being given an option but to have surgery now if I can't have anymore infliximab
Posted 4/8/2013 5:21 PM (GMT 0)
I've had a bag for 14 months. I was steroid dependent and had many complications because of that. I never knew how bad steroids were for you until I actually had surgery and it impaired my healing. Despite all the complications, I would do it all again. I have my life back.

My fiance is not turned off by the bag. He is perfectly fine with it. Also, don't feel like you will have to change your clothing. I wear tight clothing and I even wear a bikini. I like to decorate the bag with zebra duct tape :)
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