Introduction:
Hi, I’m Marti. I am a happily married 30 year old with stubborn Ulcerative Colitis since 2005. There are no meds that work anymore except a high dose of prednisone which has made my face all puffy and I can hardly recognize myself in the mirror!
Because of this, I have a surgery scheduled for Feb. 6 to remove my colon. Trying to accept this… Luckily, I have a very loving and supportive husband who will be very important to my recovery. 
Some more about me:
Having UC is terrible on your social and work life as you all know. I am a supervisor for a cleaning co. which means I drive a lot and when I’m not driving I am at a clients home (not the place you wanna do #2)…. So, I’m looking forward to not having to run to a bathroom at a gas station or worse, pooping my pants!!! I realize that having a bag will be life changing and I will have to schedule my work around my bag schedule but atleast I can schedule my poo! Can’t do that at this point in time :p
My struggle is that I love my job and will miss my work while away as well as worrying about my husband keeping up with the bills while I’m off work with no paycheck coming in…. but, I’m sure we’ll get by.
Symptoms:
Since September have had BM’s anywhere from 10-20 times per day depending on what dose of prednisone I was on.
Stomach pain, colon spasms, weight loss, weight gain (from prednisone)
J-Pouch or Permanent Bag
Here is my big predicament! Before I went to see the surgeon, I did plenty of research on colon removal, j-pouch, Brooke ileostomy, internal reservoir and so on so i had tons of questions! I had decided before I saw the surgeon that I did not want to have a J pouch because it seemed as if having a J pouch is almost like having colitis! Going to the bathroom 6-8 times per day, pooping your pants at night, getting up at-least once per night to poo, having all that rectum pain, pouchitis (which to me seems like it would be like having ulcerative colitis), and then you have to learn to control your bowel movements. After telling my doc that I did not want the J pouch, he talked me into getting the first surgery and then if I never wanted the second, take down surgery, I wouldn’t have to get it. But ateast then I still have the option of getting the take down surgery or not.
I guess, my question to all of you is how is life with the J pouch BETTER than having your ileostomy bag? Is it better? From everything I’ve seen and all the stories I’ve read the ileostomy bag seems better than the J pouch. I’m just so completely nervous and am not looking forward to looking down and seeing my bowel sticking out of my tummy! But, I’m so confused about which surgery I want to get. At this point, I want to get full colon removal including removing my rectum and just sewing everything up but I don’t want to make a decision that I will regret but I also don’t want to poo mucus while I have a bag if I never decide to go get the take down surgery! Help!
written by Marti S
submitted in the colitis venting area
January 7, 2013 at 1:03 pm
Hello! I am 24 and just had my third and final surgery to get the JPouch. Like you, I read lots of negative information on the internet before and during all the stages of my surgeries, and although some of it was semi-true, the majority of it I have not experienced. I have had a WONDERFUL experience with my JPouch so far, and it has only been three weeks since my final surgery. Of course, it takes some getting used to, but I am only going to the bathroom about 5-6 times a day, and maybe once at night. I have not had any accidents or anything. It is such a relief, especially after having UC and going on average 25-30 times a day. I will say that surgeries are difficult. I had pretty tough recoveries after the first and second surgeries, but I would do it all over again in a heartbeat knowing that the end result would be so great. And with the pouch, even if I have to go #2, I can hold it for hours if I need to. I think it is good to do the surgeries at a relatively young age, I think it’s easier to bounce back. I had a difficult time getting used to the ileostomy bag, but that varies for each person. The only way I got through those months was knowing it was temporary. Let me know if you have any questions, I’d be happy to email you. I think the JPouch is great!
January 11, 2013 at 8:59 pm
Hello katherine i had my first surgery they removed my colon ending up with a bag 2 more are to go so can u plz tell when the pouch is made do they remove the rectum and does it effects the sexual life after the pouch can u eat anything u want to.
January 7, 2013 at 1:05 pm
I would atleast try having the Jpouch, and if you hate it or it doesn’t work out for you (which it should, I am pretty sure the success rate is like 95% but I am not completely sure), then you can always go back to the bag. I wish I had had more people to talk to during the time before my surgery and during it, so I would have known that there was light at the end of the tunnel.
January 7, 2013 at 1:15 pm
Hey marti,I’m going on 4 months now from takedown,and I could tell you this,the bag was only good cause you will never have cramps blood,pain or any colitis crap,but it also gets to be a stinky mess too I’m in the bathroom 5 to 10 times but with pretty good control,and things are getting better over time,the doc said 6 to12 months until the pouch adapts to your body,the surgery was hell but every day after just gets better,I think I made the right choice,so good luck with everything,ps…life for me is so much better than what is was with uc,cause you know you just can’t go anywhere,and if you eat pretty good then that’s even better…lol..take care let me know if I can help in anyway.
January 7, 2013 at 3:16 pm
Hi Marti. I would at least try the J pouch for a while to see how you like it. I’m 2 1/2 weeks from my takedown surgery and the J pouch is WAY better than the bag (which I had for about 10 mos). The surgeries are rough, but the end result is totally worth it. When you go poo with the J pouch, it is nothing like having UC at all, unless you have C diff or pouchitis, both of which are treatable. There is no pain, urgency, colon spasms, nausea, cramping, blood, fatigue, light headedness from anemia. The poo just slides right out and you go on with your day.
Best of luck to you,
Lisa
January 7, 2013 at 4:42 pm
I love my bag. I had my surgery at age 30 (I am now 53). My colitis was so severe my entire colon and rectum were involved and had to be removed so no J pouch for me. It took me a long time (several years) to really adjust to my bag but the trade off is no UC symptoms. The bag gave me a new life. It is hard to put into words what that really means. I was 30 years old thinking I would live maybe 5 more years. I was so sick I couldn’t envision living to old age. Seriously! I love life now and have loved life since my surgery. I’ve only had one surgery and no complications…knock on wood…and I’m looking forward to old age. Well, older age! I just thought you should hear from a happy “bag” lady.
January 7, 2013 at 8:15 pm
Hi Marti -
I found the following web link and thought you would like to read about it (and anyone else who wants to read it). Hope this will help in your decision. Good Luck.
Copy and paste this link into your browser:
http://www.nytimes.com/1982/05/03/style/ostomies-no-longer-the-secret-surgery.html?pagewanted=all
January 7, 2013 at 11:05 pm
Hey Marti,
I was in the exact same predicament you’re facing not too long ago. Even when I had the bag, a big part of me wanted to stay with the bag because it was easy and I had grown to like it. I had my ostomy bag for 9 months. I decided to go with the 3 part J pouch surgery, knowing that I didnt have to go through with it if I liked wearing the ostomy bag. As time got near for the second surgery, I had to make the choice. Like you, I was 30 and happily married. I decided I needed to give the J pouch a shot. So I did. Everything you’re scared of, I was also scared of and much of it is true. I’ve had my fair share of night time accidents. I go to the bathroom 5 to 8 times a day. I havent had any rectal pain or pouchitis yet, but do get butt burn every once in a while. But even with all that, I would still do it again in an instant… and I even really liked the bag. Ive had my J pouch since August 2012, so about 4 and a half months now. I hated it the first two weeks, but you have to go through some rough patches before things start getting better. Life is really good for me right now. I dont think much about my J pouch anymore, I feel back to normal again and do not miss my colon one bit. I would atleast leave the door open for yourself to get the J pouch. If you fall in love with the bag, then you can stay with it. If you decide you want to go with the J pouch, then you can go that route as well. I wish you luck, sending positive thoughts your way. You’re going to feel much better without that crappy colon.
January 8, 2013 at 9:19 am
Hi Marti,
Thanks for your post. I’m a 36 year old happily married mother of 2 very active boys who also deals with stubborn UC. I’ve opted for jpouch surgery and my first one is scheduled for January 15th. There are lots of questions and concerns about surgery but I know the result is worth it. I’m not looking forward to the bag but from talking to everyone else who had the surgery I know the future without UC is much better than the past. It is a personal decision and I wish you all the best in 2013. I’m going with the jpouch and can’t wait to be rid of my temperamental colon!
January 8, 2013 at 6:50 pm
Hello Marti,
Others have given good advice, so I don’t know if I really add much. But I have had a “bag” for 38 years, had emergency surgery 3 days after I was diagnosed with uc. The upside is no uc with all its terrible symptoms, and no need for meds. The downside is emptying it a number of times a day/night, and changing it (in my case) every 4th morning. You mention feelings about a stoma. With the bag on, I don’t really even focus on the stoma. Every 4th morning when I change the bag, I of course, work with/around the stoma. But when I do have feeling it is really about how remarkable it is, for I would have been gone decades ago now without it. Wishing you all the best as you go forward.
January 8, 2013 at 11:15 pm
Hi Marti, my name is Kyle and I had UC that was in a very similar state as yours is now, for 3 years. I am 20 years old, and will be 21 on January 13th. On December 14th, I had my colon removed and the j pouch constructed. Just to share my experience so far and hopefully give you at least a little bit of help in influencing your decision, the bag is definitely taking some getting used to. Sure, it’s hard for a 20 year old to picture having an ostomy for life, but I can see how people manage and would get used to it over the years, while maintaining a lifetime of happiness. I am scheduled for take down surgery sometime in early February and I do have some concerns similar to what you’ve mentioned. I have also passed mucus through my anus, but in all honesty using the j pouch to do that felt so normal I didn’t even realize it was not my colon. However, I am aware of the complications with a j pouch and I believe they can be controlled if the patient is responsible. Keeping track of what you eat, when you eat and how much you eat is a huge factor as to when you will go (hopefully avoiding night time accidents) and exercise can do nothing but help. I’m sure that I made the right decision to get the j pouch, but if it doesn’t work, like many others have said it is not permanent.
January 9, 2013 at 6:06 am
Hello-
My husband is looking at total colon removal after not responding to steroids and now having allergic reactions to remicade. The GI wants him to start humira as a last attempt at medical treatment, but after reading about the side effects we are having second thoughts. He was just diagnosed this last summer with severe IBD (doctors still don’t know if it is UC or Crohns) that is through his entire colon. He went from fine to hospitalized with 50 pound weight loss in 3 weeks (did not need to lose any weight). His only symptom prior to that 3 weeks of severe symptoms was loose stool for about a year, but only going once a day so something he didn’t pay much attention to. We went to the ER twice and a GI in that 3 week period and all 3 doctors felt he had a bad virus due to how fast the symptoms came on and how he didn’t have any of the other expected symptoms and not in the standard age group (he’s 40). After he was finally admitted and had a colonoscopy they said it was one of the most severe cases they had seen – “like a bomb went off in there” and so “non-textbook”. I had never heard of either IBD and felt 3 weeks was a long time to diagnose something so severe, but the GIs told me that people usually would have needed to go years with severe symptoms to get to where my husband is at and sometimes it takes years to get diagnosed. That didn’t make sense to me at all. Anyways, now that it seems that surgery and humira are the last 2 options I am doing a lot of research on diet modification and am wondering if anyone in this chain (or others) tried diet modification prior to surgery? All GIs have told us that diet has nothing to do with it, but common sense seems that diet would have something to do with your digestive system. Adam seems to have been in the same situation that my husband is in and was able to go into remission and I have met others who were at the surgery stage who went on a variety of diets that not only saved their colon, but also put them into permanent remission without medications – a homeopathic nutritionist we went to recommended a yeast diet (basically no gluten or dairy), a yoga instructor who is one of the people who saved his colon through diet modification recommended the Ayurvedic diet. The fear we have is that if diet modification doesn’t work he may end up back in the hospital in the critical state he was in this last summer. Any feedback would be appreciated.
January 13, 2013 at 8:26 am
Hi Lisa:
I had a similar experience as your husband’s, except the part it took me about 6 months from my first dianosed until I almost required a surgery to remove the colon but I was saved by a medicine Tacrolimus and not Imuran since Imuran takes about 2-3 months until its effective (Tacro shows quicker effect and originally used for patient who received an organ transplant so his/her immune system would not attack the donor organ although the dosage for UC patient is much lower than those patients who get transplant.) I guess according to my doctor I was one of the classic case because I was steroid dependant because as soon as they reduced the dose of IV steroid I immediately became worse and flared. I also now take pre-biotics in powder form plus Sulfazine and I am in remission. I was also told by a doc that if I could not get adequate sleep for consecutive days the flare would occur/I could not go into remission. As far as the diet goes I eat yogurt, fish almost every other day (lucky me I live in a country where seafood is abundant) and fermented food and low residue/fat food to let my intestine heal initially. After I was in remission for 3-4 months, I can eat normally except non greasy nor spicy food (I know it was long time for my gut to heal because mine was so inflamed that they had to feed me via IV for 1 month, couldnt eat anything for 1 whole month…even water gave me diareah and lost a lot of weight like your husbands… I dont want to remeber those days…it was so bad…). I am sure your hospital dietician can advise what food to eat and avoid, but generally low reside and low fat food for me until my intestine healed. I also try not to get stressed out and Yoga or sports (like walking) is good I was told because its a stress reliever but extreme sports is not good unless if I can get enough rest to let my body heal so I would avoid exercise like marathon or hard sports/extremely stressful jobs. Ah another thing to mention I became infected with a Cytomegalovirus because my immne system was compromised due to the high dose of steroid they put me under to control the flare, and people who get infected with Cytomegalovirus gets really bad ulcers that are deep and bad…so you may want to ask the doctor to test him on certain virus infection so that they can give him antiviral medicine. I hope your husband can go into remission soon and find the medicine/lifestyle that works.
January 14, 2013 at 9:25 am
I am a tough case and had surgery only one month after diagnosis. They left me with a bit of colon ,10 cm, which is still getting inflamed and so I am having flares and quite bad ones. And I never responded well to medicine…
Now during my last flare I started with the SCD/GAPS and it has helped. I believe that most of us could get our life back with diet, supplements (vitamins, minerals, aminoacids, hormones,HCL betaine), herbs and relaxation (like yoga or exercise). BUT the problem is that we are all different and that the diet needs to be customized to fit the person and this means that it can take time.
For me it has taken 6 months to stop the bleeding with the diet and still I have sometimes a small amount. But I would say it is worth to try (once you get used to the food you realize it is food for kings and queens). But if I would give an advice it is to not assume that just cos it’s on the allowed list you can tolerate it. Also try from the very beginning to look at what you feel tolerate today. For me I knew I couldn’t tolerate fruits but I was in a bit of denial and constantly overeat fruit. Also beans and peas are really good for me and I cut them out until very recently since the protocols says you should be close to fully healed before trying these. For me however these are “healing”. Now when I am on them I feel much better, UC wise, even though you get a bit of gas from them. For some people going on a full meat diet is good and others not…
I hope you husband will recover in one way or another! All the best for you.
January 20, 2013 at 6:23 pm
Lisa if it is Crohns then the colon removal is permanent and will probably be stuck with a bag forever because the Crohns will attack any type of pouch that is created to replace te colon. If it si UC then the colon removal will cure it 100% just as it has it has for me and the J pouch will work. You should ask your GI to do the Promitheus blood test on him, it will tell you if it is UC or Crohns but is costs $1200 for just one test. I to chose to skip Humira because I have heard nothing good about it for UC patients is Remicade failed as it did for me.
January 9, 2013 at 9:22 am
Such a personal decision. As you’ve seen there are people who wouldn’t give up their ostomy and others who love their pouch. I was an early poucher; I have an S pouch, precurser to the J pouch. When I had my surgery in 1982 I was told that my ostomy was specifically designed to be temporary and I hated it. I was nauseous all the time and only had i7 6 weeks before they removed it. A few weeks later I ulcerated in my rectum and the surgeon mater of factly said OOPS, you don’t have UC; you have crohns and need a permanent iliostomy. It has been 31 years and I still have that S pouch. It’s not perfect. The first few years (yes years) were very rough and I still have issues but I have learned to live with my altered plumbing. I have seen doctors who want to take it out, but it’s MY CHOICE, not theirs. And this is YOUR CHOICE. Do what will make you and your spouse happy and know that neither solution is perfect. I wish you all the best and whatever you decide will be right for you.
January 13, 2013 at 6:21 pm
Marti,
I’m 10 days out from takedown and like others here I’m very happy so far. Not that it’s all been easy but I think it’s a small price to pay for the long term functioning j-pouch. You’ve already made the hardest decision if you’ve committed to removing your colon, by comparison the takedown is much simpler. And while you might need to use the bathroom a lot it’s nothing like UC, no bleeding, no urgency, and hopefully no ugly meds either.
I can’t imagine with the medical and surgical advancements anyone not trying the j-pouch route if its an option, granted each individual has a different scenario and I by no means think they are wrong. You know all the other arguments, bag maintenance, sleeping, intimacy, active lifestyle, etc.. Good luck to you and let us know how it goes. I’ll have another really detailed update on my takedown up shortly to share with you and others about my experience.
January 20, 2013 at 6:15 pm
Wait until your bag leaks or pops on you at night and you roll in your poo all night or have it bust on you while driving. These type of events will have you choose the J pouch surgery. I am 10 past my first surgery and so far the bag sucks, cant wait till the J pouch days.
Mike
January 20, 2013 at 6:30 pm
Marti if you choose to do the 3 step surgery will you have time to decide pouch or bag after surgery number one. This will give you the chance to live with the bag before surgery two. If you choose the 2 step you will have to decide before surgery number one. I chose the three step because they can do the entire process laproscopic with the biggest cut only being 4 inches long compared to the slice and dice cut with the 2 step surgery. I have already had the first surgery which was total colon removal with only a 4 inch cut and I am scheduling 2nd surgery to build the J pouch in 3-4 months.
January 27, 2013 at 5:54 pm
My daughter had a bag for 4 months before her jpouch surgery. Her jpouch is working out well. She is down to 1 or 2 BMs a day. She liked her bag, and missed it after her jpouch surgery- she got over that. She is so happy with the jpouch, but knows if she had to go back to a bag it would be just fine!
March 1, 2013 at 3:06 pm
Hi, i’m 25 and was 21 when i had my jpouch formed. I have never looked back I hated having my bag and had 3 surgery removal of total lower colon & rectum, 2nd surgery of formation of pouch and then 6 weeks later my ileo takedown. I really haven’t looked back.
In 4 years I’ve had 3 blockages and 2 full bouts of pouchitis, I manage what and when I eat and am just careful, I’ve learnt my triggers for blockages & pouchitis & the dreaded butt burn. I just avoid spicy food and if I can feel anything starting I go on a 3 day bland food diet so boiled rice/pasta and not a lot else. It works for me.
J pouches aren’t for everyone and they do have issues but in my experience I gave it a go and it has worked for me with management, there are days i’ll use the toilet 3 times and days i go 10 times it all depends what i eat and even an ileo bag must be managed and you can still get blockages, burns and infections I just prefer to use a toilet rather than a bag. A pouch can always be reversed if it doesn’t work for you but I’d say give it a go. It’s changed my life and I have my confidence back! Best of luck to you all x
March 1, 2013 at 8:18 pm
Hi Marti:
I am in a same position as you. I went to see a surgeon who specializes in J-pouch. After seeing the surgeon, my concern was the pouchitis and the number of bathroom I would be going, as well as a number of surgery I would have to go to resulting in increased risks of complications and the recovery time. Some people who had their rectum completely removed he said 23% of those would experience a leakage for life (not a lot but about an inch diageter so those have to wear a femine pad all the time and they need a cream to prevent butt burns). If the surgeon leaves 1.5 cm of the rectum so that the leakage is a lot less those would have to go through annual checkup for cancer developing in the 1.5 cm of the rectum left. So which ever the route of J-pouch surgeries UCers choose there seems to be certain risks of J-pouch. Aside from the surgery, there is always a risk of pouchitis. People told me before that its treatable but there is a chronic pouchitis, and if that happens I would have to get my J-pouch removed because I dont want to experience UC symptoms again (other chance to waste my time…and not being able to do things I want.)
It seems like only sure way if I want to get rid of UC symptoms is the complete removal of colon including rectum, and going for a permanent illeostomy. I also found out that a permanent illeostomy and loop illeostomy are completely different in terms of care. Loop illeostomy is prone to leaking since its flush to the skin. But then illeostomy on its own comes with some challenges, body image issues, taking care of itself and leakage, but the right fitting and appliances with WOC nurse people live very happy and active life without issues. (there are lots of products out there to provide comfort as well now I was surprised.) There are lots of Youtube videos, people with ostomies filmed and I found they are pretty good.
I am not married yet so I think dating may pause a challenge if I opt for illeostomy but there are ostomates out there who are much younger than me in their teens and they are very happy getting rid of their disease.
A thought of getting UC after 2-3 surgeries supposedly a cure, is just not jellying with me, but this is a personal choice and I guess everyone is different.
Have you decided which operation you would get?