J pouch in their 20s! help!

So sorry about your sister. I can only say that if she is that ill and not responding to meds....and it certainly sounds like she's pretty bad, then she may greatly benefit from having surgery. I was older than her...41 when I had my surgery but I was every bit as "broken". I was missing out on my children and life in general. My j pouch has given me my life back. The surgeries are definately rough but I cannot express enough how nice it is to be UC and drug free. And there are many members on here that are in their 20's. Best wishes to your sister.

82 pounds and failed every medication and is on her last chance with medications? She cannot eat or drink? She is depressed?

I feel for you guys, I really do. But, NOBODY wants surgery. At some point though, you need to accept reality that the colon must come out or she will die. I hate to be blunt, but that is sort of where it is. I was in the same pickle, circling the drain, bleeding out, loosing all my strength. I was older though, 40 when I had surgery. But, I know about having UC and being young, body image, that sort of thing. I was diagnosed when I was 15. I was lucky that I responded to treatment at that time. Others who have dealt with dating and such after colectomy will chime in I am sure.

Being a RN, I am sure that you know all that can go wrong with a major surgery, and you also know what can go wrong by failing to treat this disease. When it becomes unresponsive to treatment or steroid dependent, it is time for a colectomy. The choice ceases to be should she have surgery, but what surgery should she choose?

I am an RN too, and I did all the research I could at the time, and even with the potential complications, I chose to put my faith in the j-pouch because I was so unsure that an end ileostomy would be a good fit for me. Continent ileostomies were experimental at the time, but I still think that the j-pouch has fewer complications than the continent ileostomy. For me, it saved my life, restored my strength and health, and helped me live a normal life. I travel, camp, hike, eat, drink, have a normal sex life, and don't really think about my pouch that much. I am in my 17th year with it. It is not perfect, but there is no perfect once you have refractory UC.

If she were my sister or daughter, I would be helping her learn to cope with the notion that colectomy is in her future and accept it as a new normal for her. There are many thousands of us who are quite active, capable, and loved. I would help her find out what she wants that is a realistic goal. If she can get to that point of acceptance, things will get better. Plus, she could still get into that magical remission, and wouldn't that be nice?!

Take care. You will find a lot of really nice people here that will give it to you straight, both good and bad.

Jan

I'm no longer a young one, BUT I had my surgery when I was 19 years old, and I've had my J pouch for 22 years. I've had great success with my pouch, honestly. This past December was my first issues in, well, forever... pouchitis, a narrowing of my outlet needing dilation, and I have a perianal fistula with a seton drain, but it's still "good" with my pouch. I'm not at all unhappy with my choice to have my surgery.

While my colon was diseased, badly, and I'd had UC from age 11-19 when I finally failed available treatments *there were less those days... I wasn't as "sick" as some UC patients are when forced into surgery (we tried bowel rest and TPN and high dose steroids, and nothing would control it). My surgeon was surprised I didn't act "sicker" after he saw how bad I really was in there. I had mine done in 2 surgeries, and was back in school late August of that year (takedown was in May). It saved my life, for real... while I know there are people who suffer a lot of issues with pouches, I do think that the majority have decent lives with them (when you come to a site like this, you generally are interacting with a lot of people who have had problems... the ones without the problems don't seek out sites as a whole). I think it's a mixed bag, honestly, and no, post surgery, you're NOT the "you" from before UC, but it is better, usually.

I was dating my now husband at the time... I was 19, he was almost 18, and we had the "normal" physical relationship anyone would have. My scars mean nothing to him. We were married 8 years later... I have one beautiful daughter. I've been able to eat pretty much whatever I wanted, I drink wine socially, and enjoy myself just like anyone else, and if I didn't tell you what I had done, you'd never know. I had the "regular" college experience... it *can* be ok. I can't promise you her experience will be as good, but keeping a diseased colon is NOT a good option. She might benefit from a three step surgery, if she's really ill, but from what people say about it, when they've been SO sick, they feel SO MUCH better once that diseased bowel is gone, and it gives them time to heal and regain weight and strength. Mine stopped that horrible bathroom urgency, blood stools, and let me stop being a prisoner of the bathroom.

My experience with my chronic illness and surgical procedures is what caused *me* to become a registered nurse. Granted, these days, as an ICU nurse, surgery scares me more than it did back then. Back then, I had all the confidence in the world in my surgeon (he IS great, though), and it paid off for me. After surgery, I've needed NO meds, only a little Cipro here and there for mild pouchitis through the years (like maybe 3 times). I know you're afraid for her, but honestly, if she's as ill as you say she is, and she's failed all of today's treatments, well. I think the answer is simply to get rid of the diseased, inflammed colon.

I had my surgery earlier this year shortly after my 26th birthday. I was single at the time and I admit it screwed with my head to wonder who would ever want to date me after that. On the other hand, I had been ****ting my pants for several months and unable to leave the house, so it's not like anyone was dating me beforehand either...

Anyway, I digress. I agree with Jan that in a situation like this it's pretty clear that the colon has to come out for her to survive. I believe that surgery saved my life. I've gone to the beach, worn bikinis, partied, went shopping, traveled, hiked, worked, and yes, dated. J-pouch/ileostomy life isn't perfect, but it's a hell of a lot better than wasting away just to be the life support machine for a wrecked colon.

I have a blog in my signature and please feel free to send me a private message or an email, I'd be happy to talk to you or your sister directly about this stuff. I can't be hugely reassuring as I barely even HAVE a j-pouch yet (well, I have one, but I don't use it) but I'd like to help if I can.

I am so sorry your sister is having such a rough time! Our stories sound almost identical! i was 21 when I was first diagnosed and had just started dating my now husband. I was dealing pretty well with the symptoms but after we got married and had our first child I flared and could never get off steroids! I had a steroid dependent colon too. I could never get below 30mg or I would have a terrible flare and would always have to take even more steroids to calm it down. I tried Remicade, methotrexate, 6mp and even tried Humira. Nothing worked so at 28 I had had enough and decided to have the surgery. I was on 50mg of steroids and they told me going into the surgery that it wasn't ideal and I would have issues healing. I want to tell you that I had a horrible experience healing and basically got every infection, had numerous perforations because of the steroids and poor healing, I got septic 2 times and had a drain tube in for 9 months. With that said, I would do it all over again because my quality of life is so much better now. It was not ideal but I love my j-pouch! It is a hundred times better that being incontinent and in pain 24 hours a day! I would be happy to talk to your sister if she would be open to the idea. Also, my husband was a resident when I was going through all of this and it was great to have someone who could explain things to me. Good luck and I hope your sister finds some peace. Some boys just plain suck but I was beyond blessed to find a really great one who didn't care about all my issues and your sister will find one too!
Gina

I was 27 when dx and similarly was 88lbs at 5'1" when surgery became a reality. I had only had UC 6 months. I was on TPN. My "choice" was surgery, or stay in the hospital on TPN. Not really a choice.

I did the j-pouch in two steps. THough mine ultimately did not work out for me and I went to a perm ileo, both the j-pouch (even when not working well) and the ileo have been MUCH better than UC.

Don't forget most people here are having problems. I have four pouch friends who no longer frequent this board becuase they are healthy with no pouch problems.

As for the love life issues, all I can say is I am married to a wonderful man who doesn't care a bit that I have a perm ileo. Nor did he care about the pouch. He did care about seeing me in the hospital, unable to eat, unable to walk, unable to live. It may take time to find the right person, but there are wonderful people out there who will see your sister for who she is, not how she poops.

Just FYI, I've had two kids since my perm ileo. All four of the pouch friends I mentioned above have had kids since the j-pouch. Life does go on, and surgery can be the beginning. Scary as it is, it does sound like her only option. J-pouch, ileo, whatever, just make sure the doctors explain all the options, pros and cons of each. Make sure someone from your family is always with her when drs discuss things with her as she doesn't sound like she is in the frame of mind to hear the info in the best way.

I had my colectomy at age 27, after having UC for only about 6 weeks (diagnosed for only 3 weeks). I did not respond to any treatment. I was 5'3 and 86 pounds and my surgery was done as an emergency. I would have died if not for it.

I got my j-pouch at age 29. I'm now 35 and happy with my decision. I don't miss my colon and I'm glad it's gone, that I'm not suffering through illness and misery, half starved and tethered to an IV pole.

Basically, when it comes down to an immediate life or death question, as it was for me, the decision is far simpler. It might not be at that stage yet for your sister, but in her case, it doesn't sound like she has much quality of life at the moment either. Surgery is no walk in the park and colonless life is not without its own special issues either, but at least with surgery, the setbacks are usually temporary and over time she will improve. And keep in mind that UC this severe is not likely to ever go into remission, and she's potentially setting herself up for a lifetime of dependency on meds, not to mention the day when surgery might become unavoidable (either due to a severe flare, perforation or cancer down the road). Nobody wants surgery, but she has a better chance of feeling better physically (and in turn probably mentally as well) once her colon is out, whether she decides to go for the pouch or have an ostomy. It's better than gambling on meds that could, at any time, just stop working. But by taking the colon out, she's taking a huge step toward her future health. It's scary and life changing, but again, what type of life does she have now?

My pouch is 23 years old. There are a few people on this site who've had their pouches longer. But this surgery has only been around for about 25-28 years so there are no statistics beyond that.

Most people don't have chronic pouchitis or leakage. Most people are doing just fine. Your sister is in such bad shape that it seems like it's time for her to have surgery. I'm sure she's sick of being sick.

One of the reasons for choosing to have the surgery is that she doesn't want to wait until she's so sick that she has to have emergency surgery which most often takes much longer to recover from. If she has surgery, my suggestion is to have an end ileostomy for a while and regain her strength. Many people who are very ill when they have the surgery, wake up from it and cannot believe how much better they feel - even with the post-operative pain.

It just doesn't seem like there are many more options for your sister. And that relationship thing will all fall into place in spite of the arse of a former boyfriend.

kathy

I honestly wish my GI drs mentioned this surgery when I was in my twenties. I didn't find out about it till I just hit my 30s. UC tooky 20s from me. A whole ten years of a roller coaster ride most of the time experiencing sickness than being healthy and enjoying life. It eventually got to the point I took every medicine out there and my ER visits were starting to become closer and closer together. The only time I could feel good in with about 10 Vicodin a day and 40-50mg of prednisone and we all know the long term side effects of continuing a regimen like that. If you don't know the evil of prednisone. When you take it you feel like a superhero but its doing evil things to your bones, joints, teeth. I'm experiencing now after using the medicine for so long how horrible the body pains can be and how weak my bones and joints are. The medicine tore me apart. It seems like in your sisters situation that's where she is right now she can not feel any slight feeling of relief without having that prednisone fix. She is better off opting for this surgery now before she does real damage with all these medicinces. UC is a horrible disease to fight and it strips your life from you and she has an opportunity to regain that life at an early age. She also has the advantage of most likely a shorter recovery time than someone older due to her body being able to heal quicker.

I think at that age its the challenge of getting over the anxiety of it and understanding how things will work in the future. Not any of us close this life for ourselves some older some younger but we all had to make that decision on what type of future we wanted and some that let things go had the decision made for them. I suggest she be the one to say its time instead of making this an emergency surgery in the future. If you do decide to take that route talk to your surgeon thoroughly so she know the exact risks and complications and that she will have a long road to recovery ahead of her and she can't rush things. I was blessed with one of the best, most caring, compassionate surgeons you could ever find. We are all here to support her and you if needed. Good Luck.

PS I am 30 now my takedown (last surgery) was in March. I had UC for 10 years with no response to medication. I am completely satisfied with my decision and even this early I'm my recovery I am able to enjoy my wife and 3 kids more than I ever could in the last 3 years.

I am not that age anymore but i had my surgery at age 23. I was dating my now wife. I had taken every medication and tried everything. I just reached a point where i just had to get better. I had been suffering for too long. I was litterally having 30 plus BMs a day just to name one symptom. I do have to say that doing to jpouch surgery is the best decision i ever made. If i would have known i would have felt this good earlier i would have done the surgery sooner. I waited till i was in really bad shape with my UC so i had to quit college during my whole ordeal unfortunately. When you look up stuff online you do find negative things because the majority of people that post things online are people that are looking for solutions. after almost 6 years with the pouch i just now have a bit or pouchitis, i was given antibiotics and its already helping so it is something that sooner or later a jpoucher can get and not have to worry because it can be treated. The people that are doing well are going about living their life. In no way whatsoever has the jpouch even limited me. I am an industrial service engineeer and am constantly on my feet and working in extreme temp environments. As far as dating, you have to find someone understanding because in the end we all date so that someday we can end up married so if they can't handle you as you are just move on. Best thing is for your daughter to work on her health and feeling better. the right person will come along when she least expects it. I do hope if she really needs the surgery that she is not afraid of it. don't let the online things make you afraid. like Jan said don't wait till its life or death. I ended up waiting and recovery was alot harder.

I am 28 and almost two years ago UC hit me like a truck overnight it seemed. I have always been healthy and active before then. I just thought I had the flu and within a week I was in the hospital. Within 3 months I had dropped from 160lbs to 102lbs and was in terrible pain. I also did not respond to medication and Remicade did not work at all just made me sicker. I had a girlfriend and a baby boy. I thought my life was over and I was doomed to spend every other week in the hospital.....Finally....my GI told me my only option was surgery. I was so scared from reading about all the horror stories online. I actually was wishing I would just die all ready! But I talked to a gentleman in town that had gone through it and he was living a normal life and even played hockey and boxed! So I went ahead with the surgery. The first surgery was rough and dealing with the temp ostomy was a nightmare, after takedown IT WAS ALL WORTH IT! I am pretty much back to my old self and do everything I did before I got sick. The only difference is I watch my diet a little more and use the loo a few times a day but it no big deal. I go on wilderness backpack trips, work long days in the oil field, workout, and pretty much live a normal young guys life! people don't know I have a j pouch unless I tell them. I know exactly how your sister feels but reassure her as long as she is determined and stays positive she will get through this. The hard times are just a memory for me now and even though it took some struggling I am so glad I got my life back!..... As far as relationships go there are plenty of guys out there who will understand if she is a little loud in the bathroom. And if they can't then that's a good way to tell they are not great guys anyway. I was lucky and my girlfriend stuck with me through it all. She is beautiful (out of my league )enough to have any guy she wanted but she stuck with me through it all. I really hope your sister chooses to get the surgery as it sounds like its her only option. I know its scary but she will relize a lot of those fears were for nothing! Good luck

When I was 18 years old I ended up having an emergency surgery to get an ileostomy. I didn't think I'd ever be able to get a boyfriend, or for boys to find me attractive but really that's not the case! I had my bag for 4 years and after 2 I met my boyfriend, being a decent human being he didn't care about my illness, which was great! About 3 weeks ago now I had my j pouch surgery and it's tough, but I know in time it's going to get better! I'm now 22 and have my whole life to adapt to it although ofcorse I'm hoping it only takes a couple of months! Haha but having a pouch allows you to wear what you want and not worry about a big hump under your dress! I can't see how a pouch would effect a new relationship, youl have no physical evidence apart from a scar and people have to pee plenty of times a day so what's the rush in dishing out all you personal details until you trust the person! I hope this helps

Steph xoxo

Like a lot of people have said, when you're in that state sooner or later you have to accept that surgery is the only option or you'll die - I was 21 at the time. It wasn't easy and other people often make you feel worse by bringing up these horror stories.
Eventually I had the surgery as an emergency as I was so weak and didn't know what to expect when I would wake up.

Immediately upon waking I felt a sense of relief and the lack of pain that had plagued me for so long. It's hard to describe without experiencing it yourself, I think - to realise how much strain your body was being put under, to the point that you'd accepted it as "normal".
It was strange having a stoma, almost like I didn't consider it a part of me, but like an extra piece of clothing. I found it easy to manage and change. I only had a handful of leaks the entire time I had it and that was at the beginning because the stoma changed size.
Having said that, and when I tell people this they find it hard to believe - you don't think about it much. You have your life back. If you ever had one at all! Being able to go all these places and do all these things you couldn't do before is so incredibly liberating - like you've been freed from prison! I was SO much happier after the surgery and it didn't take me long to recover. I was home in a week and fully mobile after about 2 months.
When I had my jpouch it took even less time for me to recover, I was home in a few days. I had no leaks at all, it is very easy to control when you want to go and I could hold it for hours after about a month. I can very rarely get leaks if I'm being silly (drinking far more than I should, eating something I shouldn't, but you learn this as you go).
I opted to have the jpouch mainly honestly because I couldn't foresee any girl my age wanting to be with me if I had a bag. I know it isn't true for everyone, but I wanted to try the jpouch and it has worked excellently. I go "normally" out of my bum, just more often than most people! Usually around 5-6 times a day and 1-2 times at night, but sometimes I'll sleep through with no problems, it varies slightly. My bum does get a bit sore sometimes but it settles down quickly when you look after it!
Best of luck.

Hi. I am a 15 year old girl. I know I am not in my 20's, but I can definitely relate. I was diagnosed with severe UC when I was 10. All medications failed on me too, I was alway sick, and I felt hideous and broken. I remember being only 11 and going to therapy because I would right "I want to die" all over everything. I used to get called anorexic, people at school would spread rumors about me, and I would also become 'fat' when I was on prednisone, as that is the only thing that would work for me, and eventually that failed too. Believe me, no one wants UC. My parents, especially my dad were in denial about it. I remember being on all of these experimental drugs, and I remember my dad putting me on weird diets and telling me I was like one of those "fat sick and nearly dead" people. Remember, I was probably 12 at the time. No other medical problems. For me to have the idea of a j pouch was awfully scary. I remember when the ostomy nurse visited me to mark where it would go. I would hide and kick ad scream. What really has helped me though is looking at the big picture. If I got this done, I could live a (normal for me) life. I knew that having this done would be positive. I remember feeling so ugly, and feeling like I would be sick ad hideous forever. Now, I wake up and I am happy. Going through all those things has helped shape me as a person. I also have learned not to give a sh*t (pardon my language) what people think. I have scars, mentally and physically and that is what makes me who I am. I wake up every morning and tell myself "I am a bad b*tch an no one can f*ck with me. I am a young women, and I know what I deserve. I do not need anyone to tell me otherwise. Sure, life has ups and downs. But we are all beautiful inside and out. I know my life will eventually fall in to place, and being young like your sister this is only the beginning. It is worth it. You are worth it. She is worth it.

Again sorry about the swearing or if i had typos or seemed off topic. I hope the best for you all

I'm 33 now, but I had my surgery at 23. I went through a stage of refusing to have surgery, but eventually I realized I wasn't going to have a choice. Eventually I decided I wanted to do it on my terms and not when I was lying in a hospital near death. That's when I researched my options, previously I thought my only option was an ileostomy and my drs didn't know about the jpouch, found the jpouch and went for it. It was hard, but definately the right decision. I've never regretted it, I even got well enough to have my daughter (I had a son at 21 in between flares, and before my UC escalated as much). I did have the support of my husband and family, that is so important to be there for her. I wish her luck.