Since I am completely out of sick days, and I am staying exhausted, I have completely cut my Crohns meds and slowly cancelling dr appointments. I haven't taken any specifically for the Crohns in a few weeks now and I really can't tell any difference. I may regret this decision, but I cannot afford the cost of the stacking medical bills, I can't afford to miss a day's pay, and I am just frustrated in general. The pains & exhaustion haven't subsided taking the meds, so I feel like I am wasting money I can't afford anyway...maybe I can catch up on my bills for what I spend on medical care. If I am going to stay in pain, I may as well not have to worry about how I have to pay for things while I am at it.
Taking a break from meds and drs...
- Thread starter lisadc1
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Help Support Crohn's Disease Forum:
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I agree with Ron and pilgrim.You should get in contact with your drs.Are there any charities that can help with the bills?.I would say that it is rare for someone to give up crohns medication and say they were better for it in the long run.
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Oh lisadc1, I know exactly what you mean. I feel like a very expensive housemate in my husband's house. I have no idea if anything is doing anything worthwhile. I am sick to death of swallowing pills. I am sick of feeling revolting. But, something may be doing something - it's the only thought that keeps me from stopping everything. The futile feelings will pass. Stay on your meds. The bills will get paid. Don't hurt yourself trying to work. Take the time you need. Sending hugs
Crohn's when well-controlled by meds is a sleeping dragon. Still alive and still threatening but not causing any damage at the moment. Unfortunately, your dragon is not fully asleep. It's tossing and turning and still breathing out some fire and causing the pain and fatigue. But by stopping the meds you will lose even the partial control you do have. The odds are very good that the dragon is going to come fully awake and come roaring out into a full-blown, fire-breathing rampage.
IMO a better approach would be find a better therapy to get the dragon fully under control. Is your doc an IBD specialist or just a routine GI? I recommend going to IBD specialists whenever possible, especially for refractory cases like yours.
I suspect there is an answer for you out there. It's just proving to be harder than usual to find. Don't give up the search.
IMO a better approach would be find a better therapy to get the dragon fully under control. Is your doc an IBD specialist or just a routine GI? I recommend going to IBD specialists whenever possible, especially for refractory cases like yours.
I suspect there is an answer for you out there. It's just proving to be harder than usual to find. Don't give up the search.
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Having been dealing with this over a decade with our son, the temptation is there to walk away. This year he has been pretty much at home with short trips here and there. After his last full blown flareup about 6 months ago he is terrified, and also wants off his meds. All he is on right now is Pred, and is looking at natural remedies. One thing I have found is this monster is picky, temperamental and lies. My son was in remission for about 5 years on minor meds and it came back hard the last year has been the worst so far. So we are looking at alternatives, but doing nothing at all gives the body no army to fight with and sits open waiting for attack. I am not saying a natural approach is for everyone, but if you are going to stay away from doctors and meds, maybe at least look at natural sources ? Just a thought..... sounds very scary.
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I am not on anything right now either. Just waiting to hear what I may be put on for about 9 months. I wont find out for another 6 weeks. So I just went the route of eliminating foods that seemed to cause problems, which has been pretty much everything except 6 items but at least I don't feel quite like the crap pile I used to. Its depressing after a while, I think we all can understand that. Prayers you can start feeling better soon.
For the most part I found the side effects of the treatments are often worse than the Crohn's itself. Often they work and quite well at first, but then over time sometimes only weeks and the treatments go against me.
When one looks at the side effects of these, and the heavy loads they can present to organs such as Kidneys , the Liver and others, as a patient I ask this question; Is the damage being done to my body worth it? After doing rounds of different treatments I will say resoundingly NOT!
I believe over time, these treatments would have done more damage to my body than the Crohn's. It went untreated for over 25 years before my diagnosis. I can say with certainty given my system the body can handle Crohn's better without the invasive big guns of Cipro, Remicade, Aza, Pred, etc. Are these treatments effective? I would say yes for the short term, if your body can tolerate them, but for the long term I think they do more damage than good.
I am a firm believer that Crohn's can be controlled by diet, stress & pain control and changes in your environment such as identifying allergy triggers. As others have mentioned Crohn's is a nasty monster, and one has to figure out the puzzle of what makes one's system sick. Light exercise such as cross country skiing does good for me. With the fresh snowfall last night, I am going to ski up the trail this afternoon. This activity really rejuvenates me.
When one looks at the side effects of these, and the heavy loads they can present to organs such as Kidneys , the Liver and others, as a patient I ask this question; Is the damage being done to my body worth it? After doing rounds of different treatments I will say resoundingly NOT!
I believe over time, these treatments would have done more damage to my body than the Crohn's. It went untreated for over 25 years before my diagnosis. I can say with certainty given my system the body can handle Crohn's better without the invasive big guns of Cipro, Remicade, Aza, Pred, etc. Are these treatments effective? I would say yes for the short term, if your body can tolerate them, but for the long term I think they do more damage than good.
I am a firm believer that Crohn's can be controlled by diet, stress & pain control and changes in your environment such as identifying allergy triggers. As others have mentioned Crohn's is a nasty monster, and one has to figure out the puzzle of what makes one's system sick. Light exercise such as cross country skiing does good for me. With the fresh snowfall last night, I am going to ski up the trail this afternoon. This activity really rejuvenates me.
Thanks for the support everyone...read through each post. Not thinking the meds are making me worse. Just not seeing improvement I would love to see. Gets so frustrating at times, haven't had a day in so long that I am just not so wiped out with fatigue. Still some issues from the surgeries during the fall where my sphincter muscle had to be cut due to the fissures and fistula. Just worn down...
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Have you thought of more natural solutions ?
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It's hard when you don't see improving symptoms
But that doesn't mean no meds are the answer
Just different meds.
Have you tried een to get things to settle while your looking for the right med combo ?
I know it's hard with Ds it took over a year that get things to settle
Even then we still tinker with dose .
Having a GI who works with this is key
Can you get a second opinion ?
But that doesn't mean no meds are the answer
Just different meds.
Have you tried een to get things to settle while your looking for the right med combo ?
I know it's hard with Ds it took over a year that get things to settle
Even then we still tinker with dose .
Having a GI who works with this is key
Can you get a second opinion ?
My Little Penguin, I am not really sure what een is. Today has been super rough, lots of bathroom trips, lots of mucous. Definitely an off day. I haven't even discussed much with my GI since the last round of surgeries back in the fall. He is pretty supportive, and says I am Murphy's Law. If it can happen, its gonna happen. As of the last six months he'd been going back and forth considering putting me back on a Biologic. I have been off Humira for a little over a year. 2016 definitely was not one of my better years. It is more of my own mind set of giving it all up.
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Een is exclusive enteral nutrition
Formula only no food
Your GI writes a script through your durable medical equipment company clause
Not a pharmacy
The. Insurance covers most if not all
It's typically given for 6-8 weeks and as effective as steroids
Polymeric versions are ensure or boost
Semi elemental would be peptamen
Elemental would be vionex
The more broken down the easier on the gut
Happy
Lilmish
Cat-a-tonic
Have used it as adults
Ds has 50% of his calories from elemental formula -neocate jr
But has done full een about 3-4 times
Good luck
Formula only no food
Your GI writes a script through your durable medical equipment company clause
Not a pharmacy
The. Insurance covers most if not all
It's typically given for 6-8 weeks and as effective as steroids
Polymeric versions are ensure or boost
Semi elemental would be peptamen
Elemental would be vionex
The more broken down the easier on the gut
Happy
Lilmish
Cat-a-tonic
Have used it as adults
Ds has 50% of his calories from elemental formula -neocate jr
But has done full een about 3-4 times
Good luck
Cat-a-Tonic
Super Moderator
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- May 5, 2010
- Messages
- 10,718
As MLP said, I did EEN for 2 weeks. I had Vivonex. Unfortunately, I couldn't get my insurance to cover it, so I had to pay for it out of pocket, and it's not cheap (it was $624 for a 2-week supply - 6 drinks a day for 14 days). Having said that, it did work well for me. I went into a flare in July of last year, and by late August I wasn't able to digest anything. Even one banana would send me running to the bathroom 10+ times, and I lost 17 lbs in a month. I couldn't digest Ensure at that point either, and I couldn't try Peptamen because it has coconut oil (coconut is my #1 worst trigger food and will make me ill for days). So at that point I was hospitalized and that's when they put me on Vivonex and IV steroids (and then oral pred when I was discharged). I was able to digest Vivonex, I still had some diarrhea but my weight stabilized and I wasn't going nearly as often as I had been. After 2 weeks of Vivonex, I started gradually introducing food again (I'd do a small bit of food with 5 Vivonex drinks instead of 6, and then a few days later I'd go down to 4 Vivonex and a bit more food, and so on), and fortunately that went well. Now I'm trying to get off of pred (I'm down to 7 mg) and I've started LDN a few months ago and I think/hope I'm on my way into remission. I don't think I'd be doing this well if I hadn't done EEN to give my guts a break and let them heal. If you can get your insurance to cover EEN, it's definitely worth trying.
Curled up in a fetal position, dreading the work week ahead. Thanks to all who offer prayers and well wishes. I don't even share with my family anymore, trying to not burden anyone with my issues. This pain and constant discomfort is a bit rough tonight.
I didn't read all the above posts, so this may have already been mentioned. If so, I am sorry!
Does your employer carry disability ins? I know in Texas they do not have state disability like
Calif does. To be honest I am fighting my long term disability as Liberty Mutual denied it.
Lauren
Does your employer carry disability ins? I know in Texas they do not have state disability like
Calif does. To be honest I am fighting my long term disability as Liberty Mutual denied it.
Lauren
I do have short term disability and I was on it for six weeks due to the last two surgeries. However, for it to kick back in, I have to miss 14 days work without pay, of which would seal the deal for financial ruin. I just can't do that. I am pushing myself as hard as I can - May 5th is last day until summer break begins. The exhaustion is almost more than I can bear. I literally cry because of the pain and exhaustion...I kinda feel trapped right now. My weekends are filled with family - my kiddoes are adults and this is the place to be on the weekends so we can all catch up with one another. I won't discourage this, my family means the everything to me. They don't quite understand my pain and exhaustion and I try my best to hide it. Never would I have thought I would be like this at this point in my life. Thanks so much for the support, this is my secret go-to place that I can tell someone how I really am.
