critical illness insurance/loss of work coverage

Hi all,

I'm looking for thoughts/advice on managing finances with chronic illness--specifically loss of pay from work. I'm in Canada so health care costs are not a concern, but I have bowel obstructions every 2-3 weeks that I miss a week of work for, and have gotten news that they can't fix them which is just awful. I was told to "learn to live with it". Missing 1 week/month of work has become a huge financial burden as I am self-employed, so I am trying to figure out how to manage this financially going forward. Thanks for your thoughts.

Original Post

Wish I could help.  I had no income while I was sick with UC and having surgeries.  Lost over a year worth of pay.  I was lucky we could manage with savings and my husband 's income.  Maybe set aside a little when you can so you have a backup.  Hard when you are self employed.

 

 

Duck,

Your profile indicates that you had J Pouch surgery in 1999. Has this situation been going on for 20 years? I think we need to hear more about your history with obstructions. Without hearing more, I would not be so accepting of the doom of the “learn to live with it”  diagnosis. What you are describing is a major quality of life issue, possibly fixable although I don’t know that. It’s very tough if you can’t work consistently in any business and certainly more so when you are self employed. Good luck-

Oh goodness no, not for 20 years! I've had partial small bowel obstructions every 2-3 weeks since August and have seen 3 different surgeons, my GP, a dietician and a GI. None of the surgeons will do anything as they can't see where they are on any scans but do think they are from adhesions. It has been a very frustrating journey and I don't see that anyone will ever solve it at this point--there is no future plan of treatment other than returning to the ER every 3 weeks. So, I am trying to imagine how to manage this long term with work. 

Duck,

I would not give up on surgical treatment.  It is unusual, although not unprecedented, that adhesions become a problem so many years after surgery, however they can get larger and tighter with the passage of time. I would think an MRI Enterography should have been able to isolate the location of them- in my case this test was used to isolate the location of swelling and a stricture.  Is this one of the tests you already had done?

Duck, perhaps you could ask them under what circumstances they perform surgery for lysis of adhesions. They may have a protocol, and knowing it might be a little easier for you.

Are these obstructions partial or complete? Is going to the ER actually doing you any good (e.g. if you’re unable to stay hydrated at home)?

Hi all. I had a CT enterography and it didn't show anything. The other surgeon (second opinion) is doing an MRi enterography in March (long wait times in Canada for MRI's)  but the first one said the two tests show virtually the same thing. I guess we will see--it is kind of my last hope for answers other than getting some kind of complete blockage they will do emergent. They are all partial blockages that always clear. I try to manage what I can at home with a liquid diet but sometimes the pain is just too unbearable or it won't clear which is why I go to the hospital. When they get that bad I need the bowel rest/gastrografin that I can't do at home. Even if I stay home, i'm in no shape to work which is the larger issue I mentioned. I also think they need a record of them at the hospital if I am to make any case for how much these are affecting my life/convince them to try surgery. 

I don't know why they won't operate--they keep saying they don't know where to look which makes sense if the scans are clear, but the pain is always in the exact same place so I wonder if they can't just go in and look there. Sigh, it's probably not that simple though....

The MRI Enterography is a much better diagnostic test than the CT Enterography.  It's more expensive to do, which is why they always do the CT first to see if they can find something. FYI I posted a long thread about my MRI Enterography which I linked below:

https://www.j-pouch.org/topic/...study-of-small-bowel

There is also the possibility of the capsule endoscopy, if the MRI is inconclusive as to location.  With your obstruction history, the capsule endoscopy could be very risky, although I have read that the capsules used have gotten smaller and smaller over the years, so maybe not.  Do the MRI Enterography, see what happens and what is learned, and then if there is still no clarity, ask about the capsule endoscopy.  

Adhesions are often impossible to prove, regardless of the diagnostic test performed. I would expect capsule endoscopy to be worthless for this purpose. Even with surgery it can be difficult to reliably find and lyse the ones actually causing the blockages. The surgery itself causes new adhesions to form, and they can create new (or even worse) problems. Nevertheless, some people are fortunate enough to get their lives back from adhesion surgery. Things have to be bad enough to make it worth the risk of failure, though.

Duck, I hope things get better for you!

How are abdominal adhesions and intestinal obstructions diagnosed?

Abdominal adhesions cannot be detected by tests or seen through imaging techniques such as x-rays or ultrasound. Most abdominal adhesions are found during surgery performed to examine the abdomen. However, abdominal x-rays, a lower gastrointestinal (GI) series, and computerized tomography (CT) scans can diagnose intestinal obstructions.

  • Abdominal x-rays use a small amount of radiation to create an image that is recorded on film or a computer. An x-ray is performed at a hospital or an outpatient center by an x-ray technician, and the images are interpreted by a radiologist—a doctor who specializes in medical imaging. An x-ray does not require anesthesia. The person will lie on a table or stand during the x-ray. The x-ray machine is positioned over the abdominal area. The person will hold his or her breath as the picture is taken so that the picture will not be blurry. The person may be asked to change position for additional pictures.
  • A lower GI series is an x-ray exam that is used to look at the large intestine. The test is performed at a hospital or an outpatient center by an x-ray technician, and the images are interpreted by a radiologist. Anesthesia is not needed. The health care provider may provide written bowel prep instructions to follow at home before the test. The person may be asked to follow a clear liquid diet for 1 to 3 days before the procedure. A laxative or an enema may be used before the test. A laxative is medication that loosens stool and increases bowel movements. An enema involves flushing water or laxative into the rectum using a special squirt bottle.

    For the test, the person will lie on a table while the radiologist inserts a flexible tube into the person’s anus. The large intestine is filled with barium, making signs of underlying problems show up more clearly on x-rays.
  • CT scans use a combination of x-rays and computer technology to create images. The procedure is performed at a hospital or an outpatient center by an x-ray technician, and the images are interpreted by a radiologist. Anesthesia is not needed. A CT scan may include the injection of a special dye, called contrast medium. The person will lie on a table that slides into a tunnel-shaped device where the x-rays are taken.

 https://www.niddk.nih.gov/heal.../abdominal-adhesions

CT Barrister--I just read the link you posted. It sounds like you had a CT and then an MRI? Did they do the MRI for the very reason that the CT didn't show enough? That might give me a bit of hope. Also interesting about the scopes--my last one in August showed inflammation at the connection point too. My GI said " there is nothing I can do so I don't see a need to see you". The thing is, he hasn't even tried to investigate it or try some meds just to see if they'd help (for inflammation). I think I might ask for a referral to someone else, as it seems maybe there are some options to explore from the GI rather than the surgical end.   I've had 2 more obstructions since I last posted here  

duck11 posted:

CT Barrister--I just read the link you posted. It sounds like you had a CT and then an MRI? Did they do the MRI for the very reason that the CT didn't show enough? 

My GI at that time told me that the MRI showed more in terms of it enables better visualization of bowel thickness and where the bowel is thickest is where the inflammation is.  He actually showed me the films as he described all of this. That MRI did identify major inflammation and a stricture directly at my J Pouch inlet, which was attributed to: (1) backsplash stool, and (2) resultant SIBO.  From reading posts on this board over the years I believe this is very common with J Pouch surgery simply because the J Pouch does not have a valve to stop the backsplash, as the colon did.  Perhaps some of us are more resistant to this type of thing than others are, I suppose it depends on the surgeon and quality of the J Pouch constructed and also varies depending on the individual sensitivities to SIBO and individual response in scar tissue buildup.

That was back in 2012 and I was able to bring that situation under control dietarily after being put on a short "emergency course" of Entocort in addition to antibiotics to bring the inflammation down.

I'm assuming you have multiple clients since you are self-employed.  Is this causing you to loose clients or just the work?  In other words has your income dropped by 25%, assuming a 4 week month the loss of 1 week is 25%?  

Is it doing more harm to your business than 25%? Are you loosing clients or are you unable to add new clients?

I use to be self-employed before my j-pouch and would work longer hours when I was feeling better to cover for time off.  I have no idea if your business can work like this.  I believe there are disability benefits in Canada.  I don't know if you would qualify for them and 75% of your income is probably more than disability income. I wish you could just increase your pricing to make up for the loss but assume you are already maximizing your income so that's not an option.

About adhesions....... I needed 4 daily doses of hydrocodone, do to the adhesion pain caused by them, but only had partial blockages that didn't require hospitalizations. Unfortunately my j-pouch failed. That also caused part of the pain.  8 hours during 2 surgeries were devoted to lysing adhesions. The surgeries were first to divert and then to remove it.  I still need hydrocodone for pain but much less than before the surgeries. 

I mention this because they were lysed during a laproscopic surgery and then during an open surgery.  The laproscopic surgery was less evasive than the open and I'm wondering if it's possible for them to do something laproscopically for you. In my case they wouldn't operate just for the adhesions either.  It's been 3 years since the 1st surgery and 2.5 years since the open removal surgery. The adhesions haven't come back or if they have they aren't causing more pain or obstructions.

Sorry you are going thru this.

 

Thanks all--I am registered for the self-employment benefits but they are only for 15 weeks--they are for temporary illness whereas this seems like a whole new way I'm going to be living so I am thinking long term. I teach music, so it is a weekly commitment and not something I can do more/less of as needed--I either work or I don't and when I don't, I have no income. It sucks. I also have a 5 month old baby to care for. I just can't believe with all the medical wonder of re-organizing our organs that there is nothing they can do about this. Te Marie--your situation sounds a lot like mine, I'm sad to hear it hasn't resolved. I'm also very disappointed with the lack of compassion from doctors of the effect this has on our lives--no one has even addressed the issue of long term work management, it's like "oh well, there is nothing we can do" and no support offered going forward for how to cope, how to manage work, programs available etc.     

Hi all,

 

Me again. I had my MRI enterography and it showed absolutely nothing.  I can't believe I can have all this horrible pain and problems with no apparent cause. The surgeon did warn me not to get my hopes up as the scans only show like 50% of adhesions. Anyone had surgery with clear scans and ended up having something there? It looks like I will indeed have to learn to live with this  

My doctors could feel the adhesions. Have they felt your abdomen? Maybe your problems can't be felt.  It's not in your head, you are not pretending!  kHave you tried to do this on your own?  Using my hands and fingers I could feel some of them.  Press in where the area is hurting and you might be able to feel a knot like thing.  As you press it will hurt more.  

Fortunately for me my Internists, PCPs, have been the ones that prescribe pain medication for me.  They have felt the adhesions in my abdomen and know I'm in pain. I don't have as many pain/obstruction problems as I did before the surgeries to remove my j-pouch in which the surgeon did a wonderful job of lysing my adhesions.  Since it looks like you aren't getting any help from your surgeon and GI have you considered taking pain medication, I use hydrocodone, to help?  In my case I had and have not had to increase the dosing.  People that abuse these drugs have made it more difficult for people that use them responsibly. Fortunately I never felt more than pain relief from them. I guess if I wanted to get high I could have taken more but I didn't as I don't want to get into an addiction situation.  I have cut the dose and the number of times a day I take them since the surgeries where they also lysed my adhesions.  

It is affecting your work and quality of life maybe the best option available to you is taking pain medication. I use to wish I could take ibuprofen as it helped my pain before I knew I had UC.  I don't know what your thoughts are concerning this but I have taken some, on rare occasions. It's been years since I got that desperate.  There are some people that self medicate with things that aren't good in the long run - like alcohol. I don't advocate doing anything like that.  

I don’t know how good the MRIE is at showing adhesions. In my case it was done because they saw inflammation in my neoterminal ileum on my annual scope and they wanted to get a better idea of the pervasiveness of it above the J Pouch. And also to see if we were basically dealing with inflammation in the neoterminal ileum and a SIBO situation from backsplash stool as they suspected. The MRIE in my case showed a lot of swelling of the bowel walls closer to the J Pouch inlet and not so much upstream.

In your case they seem to be looking for other stuff and diagnostically speaking the capsule endoscopy might be a better test for you although it’s very risky and I in fact refused it back in 2008 or so. The capsule at that time looked too big to even swallow (I saw a sample capsule) but just like with smartphones, the technology on them has improved dramatically since then. I hear that they are much smaller and have better cameras. I would at least inquire about it. 

Anyway sorry that the MRIE didn’t give you some better closure on these issues.

Yeah I have pain meds, but it really isn't the long term solution I wanted. They help but make it far from a "normal life". I was hoping they could lyse the adhesions causing the issues but it just seems there is no way to see them or isolate the ones causing problems. I have a follow up with the surgeon next month--the last one--but given the scan showed nothing, I am not optimistic. 

Hi Duck,

I say keep looking for help. I say this because I had severe localized abdominal pain, repeated partial small bowel obstructions, and utter misery. I went to see the surgeon who was following me, and he didn’t even bother to examine me—he told me to ‘live with it’. I wasted eight months suffering after that, depressed and in absolute misery, and finally decided to see someone else. New GI doc diagnosed me with pouchitis and said he could fix me in a month. 6 months of abx later, no dice, and he wanted to start biologics. I said no—history of infection after Jpouch surgery, and I thought I might have an abscess or something. Had to beg for an MRI and got told off for ‘directing my own care’. But he had to eat his words, and I didn’t die from his stupidity because I protected myself—MRI showed chronic infection.

At laparoscopy, I was found to have a massive adhesion from a leaking j-pouch (leaked from the upper staple line 4.5 years after index surgery, probably due to allergy) and had to have a portion of bowel resected. My surgeon (a different one—the fourth one I consulted) said it was like concrete. 

It was a hard recovery, but I no longer get bowel obstructions or abdominal pain. I can eat fiber, soluble or insoluble, and I no longer have to suffer severe pain for twelve hours while my body is trying to decide which way to send the stuck food. 

Keep looking. If you can have a consultation in the US, try Dr. Remzi at NYU. He doesn’t look at the imaging, which in my case was a limitation, but in your case, if nothing is showing up, he might still offer you an exploratory laparoscopy. I mean, really, compared to your symptoms, having a laparoscopic surgery to see what’s going on is not bad. I cannot understand why your surgeons won’t consider trying that; it could really help your quality of life, and it doesn’t cause significant adhesions compared to a laparotomy (open surgery). A skilled surgeon can at least look around with a scope, and it’s a ton more useful than imaging, especially when the imaging isn’t sensitive enough to pick up the site of your problem.

If you can get a referral to a major academic hospital in your province (assuming that’s not where you go already), you can possibly get someone to do this. I’ve learned not to go to local docs/smaller hospitals for complex stuff—they don’t know how to handle it, and they hide their ignorance by telling you nothing can be done, instead of saying ‘I don’t know what this is, but it might be worth seeing so-and-so (regional expert) to make sure there isn’t something going on...’ Egos are so fragile sometimes, especially in surgeons, but I have found it to be mostly a disease of males. My women surgeons were remarkably forthcoming about the limits of their own experience and were happy to refer me to the expert. 

I would be very careful about the capsule—it is not a sensible thing to do when you have intermittent obstructions. It’s frankly a huge risk for a disaster. I hope the doctors there would be sensible enough not to try that. A laparoscopy, though more invasive, is the most direct way to assess the problem when imaging fails. 

Or else blend all your food and/or avoid insoluble fiber. Soluble fiber is easier to pass even with a stricture or adhesion. Eat soft, tender meat and chew it well; eat only baby greens (no stems) and non-seedy fruits and well cooked vegetables, all chewed completely; drink enough water; try blending smoothies if you want to eat anything that doesn’t fit this.

Of course, none of this is easy when you have an infant to look after, but it doesn’t help the baby when you’re incapacitated, either... I don’t miss that year and a half of abject misery and having to chew each bite 100 times. That didn’t fit my busy life. So, I restricted my diet to limit the number of episodes, and that helped, but it was a temporizing measure until I could find someone smart and brave enough to investigate properly and treat me. 

I wish you the best of luck. 

Athena has several good ideas. I was eating vegetable protein, not whey, smoothies made with fruit and veggies plus yogurt most of the time for 8-12 months before having my diversion to an ileostomy. When I did have meat it was chicken and didn't have beef for at least a year either. 

My surgeon at Mayo's was a woman and she spent 3 hours lysing adhesions during the lapro surgery to divert me. I still had pain but could eat more solid foods again.  She then spent 5 hours, out of an 8 hour surgery, lysing them during the j-pouch removal surgery. 

The local surgeon that did my j-pouch and hernia surgeries told me that there was noting to do and I'd have to live with it.  He had ordered a barium x-ray test done and there were no blockages. I looked at those x-rays. The barium made my intestines white on the film. Of course I wasn't having an obstruction problem when the test was performed. I felt he just ordered a test so he could dismiss my problem.

My GI at Mayo's was a man and I didn't feel dismissed, like I did with the local surgeon. I think it was the higher caliber of doctors at Mayo's not necessarily the sex of the doctor that was the difference. 

I have information that should help with financial assistance for people living in Canada in Intestinal Bowel Disease.

Canada has a program called the Disability Tax Credit for which most people suffering IBD are entitled to. For those who do not earn a lot, there are also grants available. There is also a fund for those 49 and younger that you can contribute to to which the government of Canada also matches contributions (although one must wait until 69 before access this money otherwise there are penalties).

In addition, in Canada one can go back 10 and refile the last 10 years worth of tax returns, therefore if you have been living with this disease for longer than 10 years, a sizable amount can be had.

This is a legitimate program from the government of Canada (you can research it) and has nothing to do with one's ability to work (e.g. people in a wheel chair are handicap but they can still work). The basic requirements is that a doctor certify the following:

1. That the person is living with the disease (indicate when first diagnosed with the disease)

2. That one spends more time in the toilet trying to pass stool than the average person

If a doctor certifies these condition (by filling out the Government of Canada disability tax credit form), there is an excellent chance to be classified as handicap and entitled to the benefits of this program.

I myself suffer from UC and I have benefited from being part of this program. One has nothing to lose by filling out the proper form and getting your doctor to sign it.

You can contact me privately if you have any questions and I can provide information in filling out the forms. FYI, I am no interest in any financial gain. I only to help people suffering from  horrible diseases like Ulcerative Colitis and Crohns. 

The process was quite easy for me and the government was very cooperative. The Federal and provincial government accept my application without question.

Best Regards,

Solomin

 

Thanks Athena for chiming in--you've given me some hope. It's been really hard not to sink into a depression with all of this, like, "is this going to be life for the rets of my life"?. I have my second-opinion consult with a surgeon tomorrow--fingers crossed. My MRI didn't show anything, but maybe she will go beyond it and try other things as you've said. I'm just so jaded now from this entire experience of no one wanting to help. Also, thank you Solomin for the disability tax credit info--I may need to look into that as I don't know how I'll return to work after my mat leave being ill 8-15 days/month. If this last surgeon has no answers, I don't know what to do--I'm in Canada so cannot access American doctors since our health coverage is only for within Canada. 

HI all. I just had my consult with the 2nd surgeon--not a lot of good news but she was at least very compassionate. She is going to do another scope herself to see if there are any weird angles etc. above the pouch that could be causing the obstructions.  It is interesting how the scans I've had are interpreted differently (others that were said to be clear, she said they were not and showed various things that were a bit odd). She also mentioned my pouch looked like it had "grown" since August. Has anyone heard of this?  She said exploratory laparotomies are not a good idea indwell likely cause more problem s than they will solve. So, here's hoping SOMETHING will be seen on the scope, otherwise it's a life of disability for me. I asked about getting a permanent ileostomy and again, it might help, but might not. Thanks all for listening. 

The Pouch expands but only in the first year or so after surgery, not 20 years after surgery. When I had surgery I was specifically told by my surgeon to resist the urge to defecate and hold my bowel movements as long as possible in order to stimulate the Pouch to expand. I thought this was a pretty fundamental standard drill with anyone who gets a J Pouch. In any event it isn’t really clear what is meant by the comment that the Pouch “has grown.”  There is a period of natural growth and you would appear to be long past that, unless something else is meant.

Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×