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Life experience with long term Crohn’s Disease

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Posted 8/18/2008 11:33 PM (GMT 0)
I just wanted to say for the moment that I have been thinking about your posts all day...especially those concerned with the emotional aspects of this disease. It's been a cause for a lot of introspection and I wanted to thank all of you for that. I think that has been the biggest thing is coping mentally, and I feel like one of the greatest helps has been listening to people like you who are learning to handle it too(or already have nearly completely it seems). This disease has definitely built a lot of character in me, and I feel stronger in the end but I'm still getting there like everyone else(and it's nice to know we're all there together).
I suppose the next step is finding other things to help relieve stress. I've heard yoga is good for Crohn's patients anyway. And breathing exercises in general. Especially after having had surgery.
Posted 8/18/2008 11:38 PM (GMT 0)
BTW,

I have had a "MILD" case of this bloody stinkin' disease ( literally, of course!) since age 30, at which age I was dxed with UC. That was 16 years ago. Unfortunately, I have had much longer than that, since high school which is to far back to remember ( as if I cared too!). Despite mild intestinal inflammation you may have heard me & other vets of CD discussing kidneystones? I was the summer king of those! My disease has gone for my Urinary tract with a vengence at times. Plus, I've had many other complications. Some of us here are in the same boat.
BUT.. right now I'm in pretty good shape, I cycle & am almost back to being able to run. I'm also looking for that special female I missed back when IBD thought it had ruined my life & was going to run it. No special info, except dig your heels in & grit your teeth.. Oh, and this NEVER GIVE IN TO THIS CRAP NO MATTER ***WHAT***!!!

Sincerely,
Matthew
Posted 8/18/2008 11:52 PM (GMT 0)
I haven't heard much of kidney stones...is that a common occurrence with Crohn's disease? I worry about some of my other internal organs and the effects of all of the medication I am taking. It's so hard to get enough glasses of water down each day.

I'm glad to see you're handling Crohn's the way you do :) It's uplifting.
Posted 8/19/2008 12:12 AM (GMT 0)
Hi LMills,

Recently I've also heard more about kidney stones, and it's on my short list for research. I'll let you know anything I find out here. 

By the way, I don't think anyone ever "completely" learns to deal with CD, but we can find ways to prevent our lives from being overly compromised. Yoga I can attest to, if you are well enough and can stick with it (watch it when/if you are on your monthly)--and I imagine any breathing techniques/meditation strategies will be helpful with stress over the condition. I hope you get all of the rest and re-focusing you need before tackling the 'big' stuff. :)

Posted 8/19/2008 1:09 AM (GMT 0)
I personally feel I came into this disease with an advantage. I had been misdiagnosed for quite some time so I was forced to live like a normal person. In doing so I learned the coping skills to get through a day at school, a night out with friends, my after school job, etc. I told people about my issues because I was always trying to find out what I had. I had a great support network. When I was finally diagnosed instead of thinking oh my god, how will I live with this disease, I thought YES!!! A diagnosis!!! Now I can start living!!! In reality my treatment made me feel better but did not cure me but anything was better than how I had been. And I was already doing everything healthy people did because I had heard for so long that nothing was wrong with me.

I worked as a corrections officer and am now in my last year of law school. I work at a law firm and I plan to go into litigation. The biggest change for me was just always having to think ahead and to always be prepared. Before I leave for work I pack my food, my meds, my baby wipes, my butt cream, some immodium, etc. I leave with a half hour to spare so I can stop as often as I need to and still be on time. When I worked corrections I always had to have a contingency plan in case I needed to use the bathroom. Will there be an extra staff in my unit, if not, who can I call that can be there in less than a minute? That sort of thing. For road trips I look ahead to try to find out great places for bathrooms and good exits with healthy foods. I'm a lot less spontaneous but I have not let this disease stop me from doing whatever I want. Oh there is one exception there. It is a given that either I or my husband always must have excellent group health insurance. That has slightly held us back from taking whatever job there is out there. Currently he holds the policy and can only change jobs if it is an equal or better policy. The firm I think I will be working for pays part of your premium but you are responsible for finding a policy. They don't offer group. So obviously that wouldn't work for me and my husband will still be tied to a job with group insurance. If he found the job of his dreams that didn't have it I would have to consider leaving my job to find it. But that is a uniquely US problem and I can't remember if you said what country you are from.

The only other thing is if I had known before I got my undergrad degree that I would have what I was experiencing the rest of my life I may have tried to plan ahead to have a career where there is always no questions asked bathroom access.
Posted 8/19/2008 3:16 AM (GMT 0)
I'm in the US. Tennessee to be exact which has been great for school since it offers the hope scholarship and Tennessee Student Assistance Award.

But career is one thing I am thinking a lot about..I really want to pursue science, and I think it would be safe as far insurance plans and bathrooms(I hope?) go.

There's so much to consider for the future in regards to that..right now I'm under my father's insurance plan with his job through the military(flight instructor in Iraq currently). It's been great as far as medication and my GI visits. Of course I just found out my $13,000.00 bill for the pregnancy won't be covered, and they don't want to approve me going on humira until I've been on medication that doesn't work for SIX MONTHS. It took two weeks to completely incapacitate me hah. Insurance is definitely something I need to be thinking about though..I can't rely on my father's plan forever. Here is to lifelong monthly 20 dollar payments for an ectopic pregnancy and obgyn visit(these apparently are not covered either!!).

Also..what exactly is immodium? Maybe an odd question, but I hear a lot of people who use it and I was wondering what it treats specifically and how is it to use along with medication.
Posted 8/19/2008 3:25 AM (GMT 0)
Imodium is an over the counter anti-diarrhea medicine.

As far as the pregnancy issue... something doesn't seem right there. I think you need to call and find out more about that. Is it because you are a dependent? That really still should not matter. I have very many friends in the military and all of their wives pregnancies have been covered in full. As far as I knew.

There are lots of others here w/ military insurance. Maybe you should start a new thread with that topic.
Posted 8/19/2008 3:33 AM (GMT 0)
No, it's because I haven't been under the plan for a full year. So many of the things they don't cover are time based it seems..We're still looking in to a way around it because my boyfriend had a formal diagnosis by his doctor that he could NOT have children, and then my obgyn and GI doctor both said that the fact that it was ectopic could very well have been due to the Crohn's so there may be something to it.

As for the immodium..how well does it work?? I lose a lot of fluid because of the diarrhea and it worries me so I'm looking for things to ease that as well as the gas and bloating..so uncomfortable and embarrassing sometimes as I live in an apartment with my boyfriend and brother, and the restroom I get to use is not exactly private. I know it's a small thing to worry about, but then again I am a 19(20 this Friday hurrah?) year old living with a partner and I hate to go through that with him in hearing vicinity. Typical teen worries perhaps..
Posted 8/19/2008 3:44 AM (GMT 0)
For me it works well. Some have doctors that say it is fine to take daily. I only take mine as needed. I love the Immodium AD (advanced) because it contains an anti-gas medicine in it. It is called simithicone. But I just realized recently that they sell just the simithicone as well. So now I am taking that to cut down on my gas and bloat.

That must have been very hard for you finding out you were pregnant after thinking your boyfriend could not have children. I hope he believed you and trusted you that it was his. So scary! Are you allowed to be on your dad's insurance even though you don't live with him or do you only not live with him because he is deployed? The rules are kind of different for military insurance.
Posted 8/19/2008 12:38 PM (GMT 0)
I definitely need to look in to that then. It's not always a problem, but sometimes it can be so painful!! Not to mention the embarrassment. I'm thinking ahead to nights where my boyfriend or my brother will have their friends over and my bathroom is right by the living area so..I don't want to be remembered for the aspects of my illness that people find to be a great butt(no pun intended I am serious) of restroom humor.

It wasn't so much difficult but really surprising haha. I had my plan A-plan B going on so it was all right for the most part though I admit I did cry from a financial point of view. As for my boyfriend, he was/has been absolutely amazing throughout everything. Most guys would have left a long time ago, but he's stayed and even said he would choose me over his family in the times that they've expressed a lot of disapproval at his helping take care of me(on top of working 40-50 hour weeks, staying overnight with me during my hospital stays, and doing the cooking and cleaning when I was completely debilitated). It really scares me to think what life would be like if I had not met him..

I can be on his insurance, but they're just being finicky. The thing is that I was extremely healthy when I was put on the plan earlier this year, and then I came down with all of this so suddenly so I'm sure they're just being the typical avaricious business people protecting their own financial interests. I don't blame them, but I could surely use their help.

I was sitting half awake this past night/early morning thinking about different aspects of this disease and different symptoms that people describe themselves having no matter what.
I was just wondering then if not having solid stools ever and daily stomach are just normal in the day of having Crohn's? I think it would be easier to accept and endure if that were the case. Although with mine the stools have varied so greatly from emptying a bowl of blood, to loosely formed, to pure green liquid. And then sometimes there is a lot of gas and sometimes there is absolutely nothing at all. The stomach pain doesn't seem to have any rhyme or reason either. So are these just things you live with for the rest of your life? I can't complain really because mine has been so much worse, and I'm just so happy to be feeling semi-normal again!

Although I would like to know if I will ever be able to eat spaghetti or pizza again. Maybe the SCD diet ones. God I miss Papa's John's and Domino's...
Posted 8/19/2008 1:19 PM (GMT 0)
I think it all depends. When I am feeling well I eat pizza etc. on occassion but I am not doing the SCD diet. That diet doesn't work for everyone. I take lactose pills with my pizza and usually tolerate it fine.
Posted 8/19/2008 1:46 PM (GMT 0)
Pizza - when I was in college I couldn't touch the stuff. A few years later I could eat it with no problem. The great thing about Crohn's is that some stuff you can totally count on and some stuff you can count on to constantly change. :) Not a great answer, is it?

As for the military insurance and them making you wait 6 months, that is BULL. Here's what your doc needs to do - he needs to write them a letter and fax it to their "medical override" department. I don't really know what it's called, but there IS a place where they can medically override stuff. He needs to say that you CANNOT wait 6 months to go on Humira and that it is his MEDICAL OPINION that you need it RIGHT NOW. He can cite how ill you've become in just the last few weeks and he can say that their delay of treatment can cause you further illness (which in the long run is going to cost them more money which they want to avoid). They HAVE TO go by what the doctor says. If that doesn't work then YOU can contact them and tell them you are going to sue them if they cause you to further irreparable harm. Girl, they would rather pay for your funeral than to treat you. The funeral is a one-time deal. :) Sorry to sound so nasty, but since this is not going away you are going to have to start fighting for yourself NOW. The insurance world has a "system" and they don't like to pay for us chronically ill people. They have to, like it or not, and you need to know what to do/say to get what you need. Otherwise you will lay around and suffer and they won't give a crap.
Posted 8/19/2008 2:30 PM (GMT 0)
On the kidney stone issue, Crohs patients are slightly more prone to them because of the way we fail t absorb certain minerals in the bowel due to inflammation. They build up in the urine and can cause stones, although it seems to be a minority of patients who actually have them. The more common complication is gall bladder disease -- I would bet a third or more of Crohns patients wind up losing their gall bladders eventually. Next to that I would say joint/arthritis comlpications come next.

Posted 8/19/2008 2:51 PM (GMT 0)
My diagnosis has not been fully confirmed but I am pretty sure that I have Crohn's disease.  It turns out that my uncle had ulcer colivits 10 years ago, and they are in the same family.  What frustrates me the most is that I am just sitting around waiting for the doctor to give me the final word.  In the meantime he has not prescribed any medication to help alleviate the symptoms.  I have massive diarrhea, ulcers and I have been fevering for weeks.  it is to the point where I no longer have an appetite.  I love food when this happens that means I am not in a good place.  I just want to know for sure so I can start making the right changes in my life so I wont be in so much pain anymore.  I am 24, and its scary to think that I will have to deal with this the rest of my life, not a very pleasant thought.  Can you tell me how you have gone about changing your lifestyle. dealing with thsi disorder and still be able to lead productive lives?

Posted 8/19/2008 3:37 PM (GMT 0)
Hi Athena117 and welcome to Healingwell. There are a few tips I might be able to help you with. One is I would keep a food diary to keep track about how food you eat can affect you and your Crohns. Another is to take a good probiotic. Many of us have a bacteria imbalance and that will help to put the good bacteria back in balance. And thirdly (once the doctor gives you medication) is that you should always take some kind of maintainence med at all times. Just because you are feeling better doesn't mean you should stop your meds. The meds help you to maintain your remission. Good luck and we look forward to hearing more from you.

Hugs,
Gail *Nanners*
Posted 8/19/2008 7:07 PM (GMT 0)
Kidney stones are pretty much a guarantee if you've had any bowel removed. Because I've had 2 resections, I had to have my gallbladder removed (stones). My GI told me to expect kidney stones at some point.

I do take probiotics. I'm sure they are helping me, but nothing totally helps because of my stricture. Nothing really can fully help with that thing. BTW, I have moderate Crohn's. I've not had abcesses or fistula's. I was told something interesting after my 1st surgery though! I had, had Crohn's for 5 yrs. At that point it was severe, because I had no clue how to manage my diet, and I was kind of on my own. The surgeon told me that after he removed a piece of my colon it was as hard as a lead pipe! He said he even banged it on the table it was so hard. And I wondered why I hurt so badly!

Anyway. You can do whatever you want to do with your life, as long as you strive to keep to a diet that keeps flares down to a minimum. Of course there are people who have little to no control over symptoms. That is the nature of the disease. The key is to educate yourself! Do all you can to fight it. If you give in or give up, you're in trouble from the git go.
Posted 8/19/2008 7:33 PM (GMT 0)
If you have long term inflammation of the Illeum ( I'm using memory here, correct me if I'm wrong!) there is an increased chance of kidneystone disease because of abnormal calcium absorption. Also, dietary changes forced on you by the DD may make it more lightly. I had a couple of stones in 1997-98. But in 2003 they became a nightmare. After that every summer up to & including last year has seen me with a litter of blasted rocks. Many here (Sniper, me, wbisme, 2ND Time around) are multiple stone passers.
It doesn't help that I have had other Urinary tract problems, including Glommerulonephritis & Interstitial Cystitis either..
And the most common stone for CDers is the Calcium Oxalate, with Uric acid being second. And I do hate the fact that I learned all this the hard way!

Sincerely,
Matthew
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