6 weeks ago had to be diverted due to leak in upper jpouch that was causing an infection in my spine. All was well up until last week, ended up back in hospital with back pain again. my infections had improved but had mass inflammation that kept me in there another week. Changed me to Cipro,Flagyl,and Diflucan by infectious disease. Besides the nausea, feeling ok . Had a followup with surgeon today and i am speechless. Said they do not want to hook this pouch up again due to leak and a sinus that Shen was working on. They now want to discuss Crohns. Nothing has ever pointed to Crohns in all these years. Surgeon said my options were to do a total pouch redo, or stay how i am with a diverted pouch, or get permenant ileostomy.It was my understanding that when he diverted me, he sutured up the leak and after 3-6 months rest they would reconnect. apparently thats not the case. A redo would keep me in hospital at least a week and out of work for 4-6 weeks. Not to mention I would not get a paycheck and I dont have a savings. Mortgage,car payment,utilitis, child support. I'm reeling right now. Been in tears all day. Not about a Crohns diagnosis but wearing a bag the rest of my life. I'm divorced now and want to date, but whos wants to date a guy with a crap bag hanging from him?
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What a tough break. I am so sorry that things are not working out as you had hoped. Are you at Cleveland Clinic, or somewhere else? You probably need to follow up with Dr. Remzi or someone at CC if you are not there. It sounds like your complications are much worse than suspected.
However, I suppose that regardless of where you get your opinions, the fact remains that you have some difficult choices to make. You may have to talk to your wife about reevaluating support, at least on a temporary basis. Of course, you can't think that far ahead while you are still recovering from this latest setback. Perhaps while you are in the hospital you can ask to speak to someone in social services to see what is out there in the way of assistance?
As for dating, try not to think that far ahead. But, there are many ostomates out there living a very active intimate life.
Again, I really am sorry to hear about this.
Jan
However, I suppose that regardless of where you get your opinions, the fact remains that you have some difficult choices to make. You may have to talk to your wife about reevaluating support, at least on a temporary basis. Of course, you can't think that far ahead while you are still recovering from this latest setback. Perhaps while you are in the hospital you can ask to speak to someone in social services to see what is out there in the way of assistance?
As for dating, try not to think that far ahead. But, there are many ostomates out there living a very active intimate life.
Again, I really am sorry to hear about this.
Jan
This sucks. I say go for the option you want and if it is a pouch redo let the bills pile up. It sounds like you don't have sick leave or short term disability so gives you a lot to worry about. But damned the bills, please do what you feel you need to do in the long run for your health! You will just have to catch up on your bills, go to the food bank, make minimum payments starting now and do all you can to minimize your expenses right away. If it is crohns then a pouch redo might not be the way to go. You might need to hold on to all of your small intestines you have to fight the nasty disease going forward. There are many folks with ostomies that do well with the ladies. I believe there are things called plugs you can put on your stoma's for the short term for intimate times. Maybe you should post about this in the men's section as I don't know what I'm taking about in this area.
This just sucks, so sorry!
This just sucks, so sorry!
You are in my prayers. I'm so sorry for your struggles and I can't imagine what you have been through. Try to stay strong - I know you feel very discouraged right now, understandably. Take one day at a time right now and don't worry about anything other than taking care of yourself and getting the support you need. I hope you have family/friends supporting you in this. I hope you will find clarity and peace very soon.
Oh I am so sorry to hear that this has happened to you. I agree that you need to weigh all of your options and follow your heart in determining what will give you the best long term option for a healthy and happy future.
I am 34, had my jpouch removed 5 months ago for a perm ileo and am just going back to work in a few weeks. The bills do pile up - I am single and it's just me paying the mortgage. No one in these situations need any extra stress, that's for sure.
But, on the dating front, let me tell you that I don't think it is going to be much of a problem for you. I know many women (and I'm not just saying this because I'm a woman with an ileo) who wouldn't care about something like a bag. I consider my stoma a "jerk radar". If a guy will judge me on what I had to do to live a good healthy life, then I don't want him anyway. Even healthy coloned people may one day need an ostomy - car accidents, violence, fighting in war, etc. - I know people from all walks of life who have needed an ostomy not related to bowel issues.
Make a women fall in love with you for being a kind, caring and genuine man and she won't bat an eye at your stoma
I am 34, had my jpouch removed 5 months ago for a perm ileo and am just going back to work in a few weeks. The bills do pile up - I am single and it's just me paying the mortgage. No one in these situations need any extra stress, that's for sure.
But, on the dating front, let me tell you that I don't think it is going to be much of a problem for you. I know many women (and I'm not just saying this because I'm a woman with an ileo) who wouldn't care about something like a bag. I consider my stoma a "jerk radar". If a guy will judge me on what I had to do to live a good healthy life, then I don't want him anyway. Even healthy coloned people may one day need an ostomy - car accidents, violence, fighting in war, etc. - I know people from all walks of life who have needed an ostomy not related to bowel issues.
Make a women fall in love with you for being a kind, caring and genuine man and she won't bat an eye at your stoma
That's a tough situation. I wouldn't worry too much about the mention of Crohn's at this point. They have to at least bring up the possibility of Crohn's whenever someone has a sinus or severe inflammation in their pouch.
Just take this time to get stronger/healthier. They won't be redoing the pouch for at least 3-6 months after ileostomy surgery regardless. Try to save money if possible. Perhaps even try and talk to your creditors to see if you'd be able to work something out.
You're in a tough situation, no doubt. But all you can do right now is take it one day at a time.
Just take this time to get stronger/healthier. They won't be redoing the pouch for at least 3-6 months after ileostomy surgery regardless. Try to save money if possible. Perhaps even try and talk to your creditors to see if you'd be able to work something out.
You're in a tough situation, no doubt. But all you can do right now is take it one day at a time.
Does anyone else think our system of health care is entirely messed up if a guy has to balance his health against other expenses. Should this not just be a right?
You may be able to go to court or file some motion that reduces child support for the short duration. I don't know if thats possible. I know you want to care for your kids, but if you don't have the means.
Additionally, Do you have short term disability insurance? I don't know if there is a social security type of medical hardship you can obtain for the two months you will be out of work.
You may be able to go to court or file some motion that reduces child support for the short duration. I don't know if thats possible. I know you want to care for your kids, but if you don't have the means.
Additionally, Do you have short term disability insurance? I don't know if there is a social security type of medical hardship you can obtain for the two months you will be out of work.
It appears that you have some time with your temporary ileo to make an informed decision on what will work out best for you. When my GI discovered high grade dysplasia in a critical area and said my J pouch had to go, I had time to get a second opinion (at Mayo Clinic), research my options and locate the surgeon. All along, I have had strong aversions regarding the bag and its associated issues. I’ve been thru a divorce and the dating scene and found that it was essential to feel good about myself (including my altered plumbing) and subtly convey that to my date/potential companion. You will know when the right time has come to discuss your medical condition with your date and learn whether she has issues with it.
In my opinion, I would first opt to keep a J pouch (either a repair of the existing one or a redo), provided the surgeon would give a high probability of a good outcome. My second choice would be a K pouch or the closely related BCIR (the choice I made) since there is no external bag or leakage problems. This choice addresses your concern about dating and intimacy. The last choice is the ileostomy, which I regard as the backup if the other options do not work out. Posters on this forum and other message boards have expressed their satisfaction with having an ileostomy.
Here’s wishing you the best with whatever option you select and to see lots of light at the end of the tunnel. (And, yes, I did find that very special woman who fully accepts my “condition”.)
In my opinion, I would first opt to keep a J pouch (either a repair of the existing one or a redo), provided the surgeon would give a high probability of a good outcome. My second choice would be a K pouch or the closely related BCIR (the choice I made) since there is no external bag or leakage problems. This choice addresses your concern about dating and intimacy. The last choice is the ileostomy, which I regard as the backup if the other options do not work out. Posters on this forum and other message boards have expressed their satisfaction with having an ileostomy.
Here’s wishing you the best with whatever option you select and to see lots of light at the end of the tunnel. (And, yes, I did find that very special woman who fully accepts my “condition”.)
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