Angie,  I think you should apply for disability and not feel guilty about it.  It looks like you are beating yourself up.  You are not weak.  Think about all that you've done and all that you've been through.  A weak person could not have done what you have done.  You deserve a rest.  Your husband is right.  What would you say to a friend who has been through what you've been through and is asking for advice?  You would probably tell her not to feel guilty and apply for disability.  I hope you will see the value of taking care of yourself and do what is best for your health.  Don't beat yourself up.  Your disease is already working on that.  Be kind to yourself.   

Someone gave you the advice to get a good lawyer to help.  I second that recommendation.  

Thank you - I definitely need some courage to ask for the disability.  I don't know why I feel so guilty.  I'd give someone else the exact advice you gave me!  I think starting the process will be my New Years Resolution. Thanks for the support.

Hello Tracey,

This is a timely post for me to read because I just took the first step towards having my pouch bypassed with a loop ileo.

My pouch served me pretty well for 15 years. I did have a high no. of BMs, tendancy to dehydrate, and an occasional bout of pouchitis (never severe enough to warrant antibiotics). I had to steer clear of high fibre food and go teetotal, but I was able to eat out, work as an editor and have a reasonable quality of life providing I didn't push myself too hard physically.

Although it was sometimes hard to manage, I now wish I had appreciated my pouch more. In May last year (2014), my abdomen ballooned overnight to "three months pregnant", and I bizarrely found myself constipated - at least in the sense of "not being able to go". Various tests later, it was established that my pouch had "gone floppy". The muscles in the small bowel walls are no longer doing their job to move food through, and my pouch has stretched out.

I tried everything suggested by my surgeon, stoma nurse and a dietitian to no avail. I am not in pain, but feel a lot of discomfort. As the day progresses, it is as though a beach ball is blowing up inside me. I am now taking laxatives (can you imagine?), eating lots of fresh fruit and salad (weird), and contemplating life with an ileo and some fresh scars.

The shock for me has been that to convert to a loop ileo, the surgeon needs to open up my abdomen along part of my old scar in order to check for adhesions. I had thought the incision would only be for the ileo, and nearly passed out in the surgeon's office when he explained what a laparotomy was!

Kushami,

since they need to reopen you would you cosider a pouch redo with a new pouch being made or a k pouch?

i wish you well. I was just able to reconnect from a loop last week after 5 months for chronic pouchitis. But it came with a price. I now need to stay on a bio drug in order to keep my pouch. My pouch is also about 15 years. 

Kushami, I think some surgeons have been trained to do the procedure you're having though a laparoscope. Can you shop around and choose your surgeon?

Scott F posted:

Kushami, I think some surgeons have been trained to do the procedure you're having though a laparoscope. Can you shop around and choose your surgeon?

Hello Scott,

Just rewriting my reply because I realised I had misread your post. My surgeon did not mention a possibility of removing adhesions laparoscopically. A bit of googling seems to indicate this is called laparoscopic adhesiolysis.

I have a good relationship with this surgeon. He takes time to discuss and explain things and I trust him. I am going through the public system in Australia, so I don't think I can shop around. I will ask about this though - he is happy to answer questions.

Thank you for the input.

Sarah

AllyKat posted:

Kushami,

since they need to reopen you would you cosider a pouch redo with a new pouch being made or a k pouch?

i wish you well. I was just able to reconnect from a loop last week after 5 months for chronic pouchitis. But it came with a price. I now need to stay on a bio drug in order to keep my pouch. My pouch is also about 15 years. 

Hello Allycat,

I'm sorry to hear you have had such a nasty and long bout of pouchitis. I have been lucky in that I only ever had mild pouchitis and it usually cleared up within a week.

My surgeon tells me that a second pouch could be possible, depending on how much small bowel I have left and whether I feel I could cope with another major operation.

At this point, the plan is to leave the pouch in and bypass it with the loop ileo, as you had done. In six months or so we will re- examine the options - stay with the loop ileo, go for a second j-pouch or remove the pouch and go to an end ileo.

I am in Australia and I don't know that anyone does k-pouches here.

I hope you are getting on okay after your reconnection.

That seems like the same 6 month plan I had. I guess the surgeons want you to get strong, and also to see if you can deal with a ostomy. 

Thanks, I'm so far doing good. Not happy about taking meds but that was a desision that I had to weigh. 

Hi Kushami,

I read your last post and recalled a response that I had made to another poster from Australia regarding surgeons there who do the procedure. My google search found that Prof. John Mackay in Melbourne does them. He was trained to perform the procedure by the noted Dr. Fazio of the Cleveland Clinic in 2010. You may wish to contact him to see if he is still doing k pouches and ask how many of them he has done should continuation with a j pouch not work out for you should continuation wit a j pouch not work out for you.

My pouch will be 23 years next month. I have had 2 episodes of blockage that were intensely painful for a few hours till they cleared on their own. Since then I've learned to never gulp my food, always chew thoroughly. The first 2 years were terrible. I'd feel the need to go then little to nothing would come out, then minutes later I'd be leaking. Finally had testing done and determined I have rectocele, probably from damage that occurred during childbirth. I can usually only get satisfactory emptying by inserting  fingers into my vagina.

     I have never had pouchitis as far as I know. I do occasionally notice some tenderness when pressing with fingers while trying to empty but it's never become anything more than that.

     I have not spent 8 hours straight in bed since my takedown. Always up at least once a night even if I don't eat in the evening.

    I always wear a mini pad and rarely have more leakage than it can handle but I do generally have some leakage most days, or more frequently, nights. I have pretty much gotten in the habit of always checking  bathroom  availability when making any plans.

   Enough complaining, now the positives. Most of the time I have zero pain anywhere. I am in better health overall than most of my contemporaries (I'm 61). I have a husband who's happy to have me, four grown children and nine beautiful grandkids. Life is good.

Deb we have a lot in common. I will be 61 on a month have had my pouch 20 plus years have had probably 30 to 40 blockages, have leakage and have to push just like you go to empty about 18 times a day but consider myself fortunate and am on better shape than my contemporaries, work out every day and travel a lot. 

Any tips for travelling? I tend to find travelling more stressful than enjoyable, but my daughter lives 1200 miles away. After my last flying experience I'm resolved never to book another flight that isn't nonstop.

I don't book a flight unless it is non-stop (unless it is absolutely necessary).  One suggesting I have is to ask for a wheelchair.  I used to do that when I was so fatigued that I couldn't walk any distance without being worn out (fibromyalgia).  You have to overcome the idea of what other people may think, and you'd be surprised at how much more relaxed you are when you get to the plane or the baggage claim. Also, I had to get over the guilt and realize that we do have a disability, and it just happens to be invisible.

I've had my jpouch about 20 years. My pouch has worked great for the first 15 years, but the last five, I've had temporary blockages, problems emptying my pouch, and leakage. Because of nerve damage, my sphincter muscle doesn't work well. I now eat small meals, (low fiber) and chew, chew ,chew my food. I drink a lot of water ( 80 to 120 fl ozs daily, and do water fleet enemas once or twice a day. I consider myself fortunate, I'm 68 and I still have my jpouch, and didn't have to go back to a bag. I go about 8-10 times a day, plus the one or two times I use the fleet. 

I am 67 and had my j-pouch removed and went to an iliosotomy last year.  I had a lot of discharge and narrowing.  I kept a raw bottom most of the time because of the caustic enzymes from the j-pouch.  Your problems sound like the story of my life.  I got so tired of the drainage, irritable pouch syndrome, and an fistula that would not stay closed that I decided to bite the bullet.  I am not crazy about having an illiosotomy, but I feel so much better physically that I am glad I did it.  I had my pouch 21 years

i have had my pouch for 23 years first few years were getting used to have a different lifestyle always knowing where the toilets are but never having to go in a hurry,have had a few painful blockages i found by doing abdominal massage and tummy snaps helped.the biggest culprit i had for abdominal gripes pain was alchohol so am tea total ,the biggest improvement was when i was diagnosed with a hiatus hernia and put on omeprazole this reduces acid throughput and almost eliminates soreness and burning and if anyone has big but burn issues i would give over the counter ppi a try.i also self enema every day sitting on toilet with a long pipe from the bath shower unit with a pvc glove on takes couple of minuets and completely empties your pouch if you are going out,anyway i am 70yrs old next week and take very few medicines odd but rare leaks at night.also after doing enema i put some orabase ointment on my finger and work it inside anus giving a coating that lasts for ages and dilates as well ,have been doing all this for about 17yrs and until then was passing loads of blood and getting anaemic now nothing surgeon could not find the cause so found my own solution,hope these tips help anyone out there

I suspect that Orabase (recommended by Dave above) behaves similarly to Ilex. It's traditionally used in the mouth and is durable in damp environments.

Yes it probably is it is used for protection of skin round ostomies  it becomes very slippery when wet and enables you finger to go in easily. I also grip my finger in there with spincter muscles as hard as I can this has stopped daytime leaks and only rarely get night leak.I think sometimes that the muscles become wasted due to not passing a normal stool and are not stretched and contracted 

Maverick Plus posted:

Angie,  I think you should apply for disability and not feel guilty about it.  It looks like you are beating yourself up.  You are not weak.  Think about all that you've done and all that you've been through.  A weak person could not have done what you have done.  You deserve a rest.  Your husband is right.  What would you say to a friend who has been through what you've been through and is asking for advice?  You would probably tell her not to feel guilty and apply for disability.  I hope you will see the value of taking care of yourself and do what is best for your health.  Don't beat yourself up.  Your disease is already working on that.  Be kind to yourself.   

Someone gave you the advice to get a good lawyer to help.  I second that recommendation.  

Angie,

IA with Maverick.  My name is Curlie and I am 61 years old.  However I was diagnosed with ulcerative colitis at age 18.  I worked for 15- 20 years with the disease but at age 40 is became difficult for me to maintain a job.  I was out on disability for 2-3 months at a time.  My Doctor clearly told me that I should retire on disability at age 49.  I felt the same as you that it was lazy and I would be giving up and considered disability to be like Welfare.  When I was diagnosed with the disease the Doctors did not know a lot about it (1980)  I was one of the first patients to have the j-pouch after several surgeries and my measurements were exact to their study.  I was truly Blessed.  However, what people don't understand is that although you no longer have the disease of colitis, you still carry the disorder in your intestines and that can be taxing on your overall body and your immune system.  Then there are other complications which can arise. For me it was or is, diabetes and High Blood Pressure, and trying to balance all of that can be disabling.  My point is that this is a disease, and it can be disabling , especially if you are not taking care of it and getting the proper rest.  So think about it.  I did it in 1997 and I honestly believe if I didn't I would not be her today.  I have not had any problems with my j-pouch and I am able to function much better in life, because being disabled has afforded me the opportunity to continue to get the proper care, less stress, and continued rest that I need.  It ended up being one of the best choices I've ever made.  Be Blessed!

Thanks for much for the kind words of encouragement.  I have struggled with this for so long. I do not have UC or Crohns - FAP is what I have.  So, I just don't know how to "prove" how this impacts my ability to work.  I know I just need to go to GI person and other docs. and explain my position and see if they will do the paperwork.  I feel like I'm begging.  I have not worked full time in 7 years.  I literally just quit one day and sort of had a breakdown.  It really never occurred to me to try to get disability until my neighbor suggested it.  So, maybe this year will be the year I get my courage up to try for it.  I know it's a battle, you end up needing an attorney, and you get denied at first - from what I hear.  One friend said - "you can't get it as your husband can support you." Well, my wonderful husband can support me - but he is a school teacher - and our insurance is through the roof - we are ok, but it's not easy.  We are living on about 1/3 of what we used to earn.  I did not understand her comment - what does my husband have to do with the fact that I paid into SS all those years?  To be frank, if my hubbie was earning over 6 figures, I wouldn't even try for disability - I would feel too guilty.  But, he's not.  We went from 160K a year to 60K a year.  (Not to be too ridiculously obnoxious and telling my money situation here) - but it's no picnic to live on 60K after taxes and the 1300 they take our for health insurance.  He has to stick it out - in 6 years he will get teacher retirement - he will still have to work another job, but hopefully not teaching.  At 61 I will draw teacher retirement, but it's not that much. The whole thing leaves me so anxious - and I've made a rather silly choice  - do nothing to try to get help.  Thanks again and I really appreciate you listening to me vent.  The guilt about this is just overwhelming - and I know that has something to do with the way I was raised, etc. - and not wanting to be another person on the "nanny state's" dime - which has all of America all up in arms. THANKS for your kind reply.