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Hi! I am a 29yr old who has Crohn's Disease and have had it for like 15 years now. I have had surgery before where the took out part of my colon, and had a temporary ostomy. They told me that I would probably have to have a permanent one at some point in my life. Well I think I may be getting to that point. I have sever inflammation in the rectum and nothing seems to be working. I am just scared as I don't want to have a bag, but at the same time if its going to make my life better and I won't have anymore issues then I am considering it. It is just hard as I am single and the thought of having a bag and trying to meet someone is hard. Does anyone have any suggestions or anywhere I can go to get some answers/advice?

Thanks,
Jennifer

 Reply posted for jbeaner22.

Hi Jennifer,

My 20 yr. old son recently had a Total Proctocolectomy with an Ileostomy for his Crohns in March 2011. Have you been to the UOAA website @ Ostomy.org? It is a really wonderful resource for Osteomates (as they fondly call each other). They have been a tremendous help to me and all my questions, as a concerned Mother.

Good luck with whatever you decide to do!

Nancy  

 Reply posted for jbeaner22.

kfelix0319- Hey there, ok thats right you had said Imuran, I was on that stuff for several years also.  Imuran can do great things as well, I think it really depends on how serious your condition is right now.  Does your GI doctor think there is a safe amount of time to see if the Imuran starts working?  Me personally, I took a very aggresive approach to hit my Crohn's head on, but my condition was got to be debillitating and I was very pumped up to attack it hard.  It was the only way I knew and  how I  wanted to approach it. If Remicade and your doctor think that is a solid game plan, I would be all for the REM, thus hopefully really not needing a surgery if the Remicade can do its thing?!

 Reply posted for lsmith1970.

lsmith1970,

2002 to 2010. my Crohn's became sever and was rectal Crohn's this time, I had a total of 9 operations, tons of hospital time, lots of blood loss and trips to the ER, home health care and bed ridden for 2 or 3 months at a time. I was a police officer and had to retire/disability in 2007 due to the CD started to become debilitating, Remicade Imuran all meds had been exhausted It was time to get the colostomy in 2009, I was 43, and I knew that if I wanted to get my life back, be free of off the meter pain that was off and on for years, it was rock 'n roll time! I found you can be just as active with the bag! Anyways, having a ostomy bag at the time was trivial compered to the condition I was In so I could not wait. I had my rectum removed, thankfully!! my anus, half my colon and a permanent ostomy. Now I have never felt better, having the bag is gravy compared to what I was challenged by, and its purely routine having it. Looking back at 9 opertaions and everything in between, and the colostomy putting a stop to it and getting the Crohn's under control is everything. Now, me personally I could care less about what people think if they knew I had the bag. I'm married and my wife was with me through all of this and took care of my wounds, one 7cm x10 cms, very deep. If your really worried about what a women would think about it due to being single, that's a natural feeling! But, if I were single and a women got turned off from me due to I have a bag, then that right there is not someone I would want to be with to begin with! The social aspect of having a ostomy is a big area, but having confidence in yourself and and a high self esteem will be huge in moving forward. If what you are looking at on getting is the way to get your CD under control, that's the main thing and outstanding. There is no better feeling then to get your quality of life back after loosing it!

Andrew

Hey kfelix0319,

As long as your GI doctor and yourself are on the same page, I know Remicade has done wounders for people with UC and CD! I think you said Humira also?, thats what I am on now, due to a nasty blockage I had from my colostomy a couple years ago. I was able to avoid my 10th surgery so I was glad to have avoided that:) IV's of steroids and cipro got the flare from the CD to subside. I have had zero issues since then and feel great! By the way, I was on Remicade for about 3 years, but my CD was just to debilitating I was to far past anything it could do, but know allot of people who got there CD or UC very under control. The advantage of Humira is that its just a shot that in my case I give to myslef every two weeks and it takes about 5 minutes and your all set! Remicade you have to go to your doctors officer for example, and its a 3 hour IV fusion, so it takes a little time. They will have a tv there and you can really just relax and you can eat whatever you are allowed to! I have had 9 operations for the Crohn's, hence I was more then ready to get a colostomy when it was time and I couldnt wait. It takes good courage to do that and I knew if I wanted to become a cop againg and play hockey, it needed to be done. I have never felt better now and am just as active as ever, I dont even notice it when I play hockey and the gun belt fits around me no problem!!:) I'm not sure what the situation is with your surgery option?, but if your GI doctor thinks its safe to try the heavy duty stuff, I say go for it!! I have heard that people have felf better just aftet there first fusion, so ya never know. Having a possitive attitide and and a full steam ahead approach is a vital part in not letting the UC or CD take over, and it sounds like you are ready to hit it head on and thats great! Let me know what you think anytime!,

Andrew

 Reply posted for Hockey Rocks.

Just returned from the GI doctor. Seems my options are now either REmicade, Imaran or surgery, I am 49 years old with UC since 2009. I have been in an active flare since January with very few good days scattered around.  I have been taking 40mg of predinisone which seems to have run its course. Would love people thoughts on my options. I don't like the idea of being on medication forever (who does) but surgery scares me too.  I like everyone else with UC am tired and desparate to improve my quality of life. My children are still young and I feel like I sit on the sidelines of life looking for the closest bathroom!!!! Any thoughts would be great. Thanks

Hey Jennifer,
I read your post and I can totally relate. I too have suffered from Crohn's which affected my colon and rectum. I am 42, single and was terrified with the idea of a colostomy bag.  For 20 years I tried every single medication out there both conventional and unconventional and nothing seemed to work. I was so frustrated with all of the bleeding, pain and abscesses but even so I knew that I did not want a colostomy. Two years ago I finally decided that it was time to visit a colorectal surgeon; I just could'nt take it anymore. After reviewing my medical history, he began to tell me about the different options after removal of the colon an rectum. I was thrilled when he told me about the Koch pouch (K pouch) also known as the continent ileostomy. Have you heard about this? Its a surgery that's been around for years but there are not alot of doctors who are experienced with this surgery. What it entails is they remove your colon and rectum and use the last part of the small intestines to make an internal bag. To go to the bathroom you insert a catheter thru a small hole in your abdomen. During the day you just keep the incision covered with a small bandage. That's it! No external bag! This doctor was a God-send. This was exactly what I was looking for; anything that did not involve an external bag. I know its a little after-the-fact but it might be something that you want to investigate. Plenty of people have gone from an ileostomy or J pouch to the K pouch. Read up on it online. I'm not sure where you live but there is a master list of experienced surgeon. I'm sure you should be able to find one near you. If you or anybody else out there would like more info on the surgery please send me a message. I would be so happy to share my story. When I found out about the Kpouch I was shocked that I had never been told about it by any of the GI specialists that I'd seen. There's not even any info on it on this site!

 Reply posted for milissa40.

Hey Mellisa,

I'm really glad that parts of my story have been able to help you in trying to decide what the next best thing to do is? Yup, this time around with the Crohn's it was the whole rectal area that was just so diseased. When I first got diagnosed with Crohn's was in 1987, I was 21 years old. I had about 10 months of literally knife stabbing stomach pain ever day, I really didn't eat so to speak for those 10 months. I was in and out in two weeks, and have a proud zipper across my stomach.  So, like you said and I understand so fully on how tired you must be of this.  2002-2010, and had to retire when I was a cop in 2007, the CD was way out of control.  Remicade and the 8 operations during that time period.  2009, my surgeon who knew and hoped I was on board with it being it was time to get a colostomy.  I know you said you had the temporary one, so that gives you obviously great insight on how this all works. I was more then ready to get my whole rectum removed.!  To me that is, and looking back, having the bag now is almost trivial and a non issue, compared to the way I was bearly holding on before!:) That's was how I felt about my situation, and if I wanted to continue my career in law enforcement, I had to get the CD under control. That in itself was a huge motivation tool, and playing hockey:) I always like to make sure to stress how I looked at my situation and what motivational tools worked for me, and would not want to advice a person if you should or shouldn't of course! I just hope my story can be inspiring for a person like yourself!, as to what you think is best! I Write back anytime!, greatcomebacks.com is a awesome web sight for ostomates or anyone! All the best with your GI appt!, I'm on Humira now to post colostomy and it has kept the Crohn's totally under control. Let me know how you appt goes or what your thoughts are anytime if you like ok!

Andrew

 Reply posted for Hockey Rocks.

I have an appointment with my GI on Wednesday to discuss more aggressive treatment for my Crohn's that I have had since 1975.  I did have a temporary iliostomy in 2002, but that was reversed.  I am on Humira, entocort, Asacol HD, Canasa suppositories, and Welchol.  The Welchol is not helping the chronic diarrhea or the incontinence.  I am seriously thinking about having the surgery and having the rectum taken care off since the Crohn's is all in the rectal area now.  After 35 years I am just tired of it.  Reading all of your posts has helped a great deal for when I go for my appt.

Thanks for all of the information you all have posted.

Milissa

 Reply posted for jbeaner22.

That's great your already active enough to throw a Frisbee around and stuff! Being that you already had a temporary one, that is a huge so that you already know the routing and what to expect, that mental aspect of getting a bag can be brutal for some people, and its understandable for sure. I actually could not wait, my surgeon and I knew that I was going to have to get a colostomy at some point to, just did not know when. So when it was time to seriously look at this in 2009, it was a really easy decision, and after learning how active you can be. I know being a cop again is gonna take a couple more years of being in remission so to pass the medical exam of the hinging process. But am playing hockey no problem. I was More then ready to get rid of my rectum to, after 8 operation's, and all medications had been exhausted, I was all about the bag:) It sounds like your operation went really smoothly to, due to so that just adds to the relief of everything for sure. Are you on any medication?,  I offer allot of advice on greatcomebacks, mainly the motivational tools I used due to so many crazy complications and how I pushed forward.  I have had more questions answered in one month on that sight then I have had in 2 years. Some just by reading other people who have the same questions, clothing, getting it wet, all that stuff.  I submitted my entire story to them to, they really encourage that so to benefit others. That's why I had to, and was really eager to and had been for awhile, It was about 4 pages long, lol, and I was not even babbling at all. Just talked about every event and what I did to get though it, let alone the final outcome feeling great again. That's where it can really help people who are so frustrated that it tough to see feeling better. Your story would be very motivational as well!. That's great your already back on your feet, and being active. Take care!

Andrew

 Reply posted for Hockey Rocks.

I will have to check out the site. The belt I have is Stealthbelt. I had surgery 8 years ago and had a temporary Ileostomy so already kind of knew what to expect, but also had the mindset that it was temporary. I was cut from hip one to hip bone. Luckily they just used the same incision this time around so I don't have to many scars. I really did not have much pain. The second week home from the hospital my 4yr old niece and 2 yr old nephew were at my parents house for the week and I was up moving around and played Frisbee and went to the park etc. I did not have a lot of energy, but was able to have fun with them. It is the end of my 6 weeks and feels like its been longer than that. I am sure I will have down moments or when I just get upset about having the bag, but I have a lot of positive people in my life and know that those moments wont last very long!! Hope you continue to do well!!
Jennifer

 Reply posted for bkb52309.

Hey Brian,

Man, after going through that, I can really empathize with you on something you said that was huge. I was so motivated to get better after the my colostomy operation, but had all these complications.  I was at that point pretty burnt out and was in pure tunnel vision. But like you said, once when all said and done, and I could just concentrate on the ostomy, I went into this yaaahooo type mode!:) and it had just gained momentum ever since. If I at anytime I get frustrated about the ostomy, like a leak or something. It takes me all but one second to just laugh instead, by thinking of the way my life was for those 8 or so years prior. My GI doctor had me started me on Humira, and that stuff has been huge, zero problems since then. Like I was telling Jennifer, do you know about the sight www.greatcomebacks.com , its geard for people that are ostomates, and has sections you can join, like I did on my profile the CD section. I have learned a ton from talking to other people., about all the little things that ostomates get to have fun with, leak's, when the wafer get wet?, blow outs, so it has been huge for me. CCFA works with them to I think? if you cant make it to a support group, I have not yet at least, its latterly the next best thing. They address all issues to that you can get involved in also, and submit your story, that one of there biggest things. I did and was so glad to find a place to do that ,so to be able to offer advice and mainly the tools and motivation I used to push forward , so to be able to have that benefit others who may be having a tough time coping to just needing a good laugh. Let me know how you are doing when you can Brian, it sounds like your whole situation was obviously traumatic and came on quickly, or did you have CD issues prior to getting the total coloectomy? Give ,me a shout anytime!,

Andrew

Hey Jennifer,

So you got a iliostomy then, that is really great that it went well, and you are already feeling the difference to! IOne thing I have learned and figured out why it can be overwhelming at first I will say in my case, is because there is no chance see the benefits of it yet?! Your in the hospital bed, all wired and tubed up, the pain factor, and just everything in between. Then, there is this bag attached to the side you?!!, and it so bazaar?, cant think of the right word, but you know what I mean and others on this page:) Its just adds to the stress.  But, when you get home!, and your getting back to normalcy with your surroundings, and you get that routine going with bag, in a little bit its so easy, and you feel allot better, that's how I pretty much reacted to it. My wound was 10cm by 7 cm is my rear end, so it took along time to heal, and a wound vac for 3 week's. Getting more active is when I know with me that it just gives you so more confidence every time on what you can do.   Also, and I just now joined this web sight way after the fact, lol, and knew about in 2009. Its called www.greatcomebacks.com , that place I have learned more about my colostomy and all the little things you need to know, I mean all the super important stuff that all ostomates deal with. Its  just like this web sight as you can post questions and read other post. That's awesome our working part time already, I was just able to finally start working again last winter basically, so it took me 4 years to mainly just recuperate and get stronger. What I love about working again, is that there is no pain or discomfort!, its the greatest feeling there is, I hope its the same for you!, I forgot what it was like, literally. I bought a belt called Ostomy Armour, and its great for me to get back into law enforcement, and playing hockey again has been great! What was the belt you got?, great job on pushing forward, so to feel better!:)

Andrew

 Reply posted for Hockey Rocks.

Andrew-
Thanks for the kind words. It has been 6 weeks since surgery and I am doing well. Really have not had any down in the dump days, but know I will probably have some over time. I just am enjoying being healthy and not having to go to the bathroom all the time. My Ileostomy is pretty easy to take care of and feel pretty comfortable with it. I am currently looking for a job so that is really the only stress I guess you could say. I am working part time so have some money coming in, but am looking forward to getting a real job and moving on with life. I know everything will fall into place. Just have to be patient and know things will work out!! Thanks for the advice!!

 Reply posted for bkb52309.

Brian- Thanks for sharing your story. Things have been going pretty well for me. It has only been 6 weeks since surgery but I already feel great and am looking forward to getting on with my life. I am 29yrs old and am unemployed. I am looking for work but kind of enjoying this time off to just feel good and be healthy! I wish I would have had this surgery 15 yrs ago when I was diagnosed. O well timing is everything and this was the time for me to have it. I have been walking and riding bike and this is my last week of recovery. I can't wait to start running or I should say jogging next week. I know I will be out of shape. haha. I just got a stealth belt that I am anxious to wear. Only down side to it, is it works best with the 2 piece systems. You wear your bag sideways and it fits into the pocket on the belt. It isn't bad for the 2 piece as you can put it on and then just change it back, but I really like the 1 piece as it is less noticeable and what not, but you have to put that one on sideways to and it would have to stay that way. My stoma "Stella" is up by my belly button so its easier to see. I have been doing things with friends and comfortable out in public with it. My friends have been awesome and know that I'll be okay!!

 Reply posted for Nalini.

I had surgery June 18th. Everything went well and am Crohn's free. They took out my entire colon and all my rectum except for the stump part. I had an abscess before surgery and it was still there so they will go back in a year or 2 and take the rest of my rectum out. I have no signs of Crohn's in my body which was a relief. I am so thankful I had the surgery. I have an Ileostomy and am doing well with it. My stoma is named Stella and she is doing well. I just got a belt from Stealth Belt for when I start exercising next week. I am looking forward to moving on with my life healthy and happy!!! I am sure I will have my moments of frustration or down in the dumps mood, but so far I have been doing well emotionally. I have been to that website and saw some of the clothing. Looks cool!! Thanks for the prayers! Hope you are doing well!

 Reply posted for Hockey Rocks.

I am also 29 yrs old and have had Crohns for about 22 years now. In 2010 I got extremely sick. I developed a blood clot that really made my Crohns worse. I was in the ICU and had no choice, but to have a total colectomy. I was so sick I really did not have time to think about the outcome. While I was recovering I became depressed because I was 29 with a bag. I got over the depression fast! I have never felt so good and at times it might be an inconvenience, but as long as I feel good it does not bother me. I am faced now with the rectum removal within the next two years. As sick as I was I might have questioned it two years ago, but as good as I feel now its an easy decision. I wish you the best and if you need anything let me know.

Brian

Sorry about that, the 3rd post is actually where it starts,   I was long, so I just made it  into 3 paragraphs.  I hope you can pick and choose areas of my story and advice that may help!  

Andrew

Jennifer, I know that anxiety of getting the ostomy, it is weird at first, but when you feel so much better!!  its unreal.  I know its easier said then done, but try to remind yourself and I had lost sight on reality to on what it was like feel good and normal again.  Try not to worry at all if you are single and if that's gonna be a issue, that's anxiety's that you don't need to put on yourself.  Just concern and get fired up to on just feeling great again!  Then those other things at least form my view,  allot of those stresses become just gravy.  Meaning it made me a better person and a  mentally  stronger person!  I know if I were single and a women liked me and them got uncomfortable with me having a colostomy bag?  One, that person would be the wrong one anyways, let alone there saying that instead of being impressed by  the courage it took you to regain our health and you  must be a really special person for that!.  Then its there loss and not yours and If I met a women like that, I would be sorta of insulted and would not want to be with that person to begin with.  So, try to think of it from that standpoint, and put you health first so to just feel better again, and everything else will just be much easier on you when your not miserable anymore and will feel so much more stronger and motivated, I know I did and am!

Andrew

Jennifer, The colostomy has to me is just a routine now, and a welcomed routine, especially having that rectum gone!  If I ever get frustrated that I have it, it takes me one second to remind myself  how I once was and  for so long, 8 years of just being a wreck.  I feel great now, I am have been playing in a great ice hockey league in Minnesota, and I don't even notice the ostomy at all, really!  This summer, I am playing on a adult league baseball team and it was not a issue at all.  I consider my self a very fortunate person, and have never said why me and never will.  Humor was one of the biggest tools I used, and any Now, I know that the bag can offer allot of social issues and so fourth, and I fully understand what you mean when it comes to dating, that's a common worry for anyone with a ostomy.  My fiance now wife was with me from almost the very beginning, so she saw how miserable I was and simply what CD really  is, unlike my family, co-workers, some friend who just don't get it and don't try to get it,  or truly understand. For me, I would not go back to the non ostomy  days for a second, and you can be just as active.as ever!   Ask me anytime on any questions you may have,   To be continued, on the next post,  I wanted to add as much advice as I could.

 I am a male and 46 years old, and I have had Sever Crohn's from 2002-2010.  I was first diagnosed with Crohn's when I was 21 in 1987, I had knife stabbing stomach pain for almost a year until the CD was found.  I had some of my colon and intestine removed, and was fine till 2002.  With me this time, it was rectal Crohns and endless fistulas that had been just causing havoc.  I was on Remicade, that stopped working and really had exhausted all the meds.  I was a police officer at the time also, and had about 8 operations for the Crohn's up until 2009.  The Crohns was so sever that the operations could not keep up with it, and rectal Crohn's was really just a miserable place to have it!  Just the constant drainage, and waring gauze 24/7 for about 5 years, never sitting down comfortably, ugh!!  My story is really long and just want to get the advice for you  I had to retire/medical disability and that was tough, cause I knew that may be it for me a being a cop, but I was miserable and in totally denial.  2009, my surgeon, my wife and I knew that it was time to get the colosotomy.  I educated myself allot about living with a ostomy and really what it was and did.  My wife goes, they have disposable bags, I right away knew that I am getting those and still do I think  its  much easier.  I had my rectum removed, thankfully!!!!, most of my colon and have a permanent ostomy.   frustration I had I would just channel that energy into I have got to feel better and wont stop until I do!     To be continued on the next post,  I had more advice I was thinking then I thought.

 Reply posted for jbeaner22.

Hey, I wanted to check up on you and see how you are. Did you go through with the surgery? I hope you are better!! still praying for you hon!!

please respond and let me know how you are. As for me I am have my days where I am down but so glad that I am not like how I use to be . 
If you had the surgery go to www.ostomy secrets .com they have great under garments that you can use to support the bag and it helps so it doesn't show through clothing. God bless you... 

 Reply posted for Nalini.

Thanks for the advice. I have been praying about it and spoke with family and a few friends and know that it is probably going to be the best decision for me. I just want to get on with my life and not have to worry about dealing with flare ups and afraid to go running and not have a bathroom near by. It will be an adjustment but like you said you get used to it and it will become a part of your life. I know that I will meet someone eventually who won't care and will just love me for me. I have to do what is in my best interest and not worry about what other people think as they are not the ones living with this disease. I hope you continue to do well and thanks again for responding. It is nice to talk to people my age who have gone through this. 

 Reply posted for jbeaner22.

Hi I just had a total colectomy and have a ostomy bag just turned 30 and I am a female so I can totally relate to your fears. I didn't want this at all. But i had no choice I put off having surgery against the doctors and surgeons advice . i was sure God was going to send me a miracle. My surgery was done March 29 as an emergency. My colon became so toxic and was making my body really sick. I had to no other choice if I wanted to live. I really hated the bag at first and still have my days but I don't miss feeling really sick and living in the bathroom ...I didn't eat for so long. I am happy that I can eat and walk outside. A man is in my life and I thought he would leave me after this especially after the nurse emptied out my bag right in front of him but he still here and reminds me this for a better quality of life. I stopped living and now I can go for walks. which is big for me and I'm sure you understand where I am coming from. I also have a cousin who has an ostomy bag and she said when she go on dates and eventually tells the truth . The guys are understanding. If any man chooses not to be with you because of this then that man is so not worthy of you. You have lived in pain and are suffering so much , you owe it up to yourself to want to get better and do what you have to do for yourself. God has a plan for you . It may not be apparent now , im still searching but remember they are worse diseases and worse surgeries. Lets be grateful there is something that can be done rather than someone saying to you its hopeless. praying for you. You are not alone.