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btpingrey

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Hi guys! I am new here. I have been having a hard time dealing with my illness. I am a very independent woman and enjoy having a career. Unfortunately, I am not sure how much longer I am going to be able to manage doing what I love - teaching. Teaching requires a lot of time on your feet and very little "personal" time. You can't exactly leave a bunch of middle schoolers on their own to take a bathroom break...and the pain is getting almost unbearable.

I started Cimzia in January, but discontinued last month due to a lot of swelling in my legs/feet. I am starting Humira tomorrow and am hopeful I will not have the same response. The steriods are awful to say the least. Unlike most Crohns patients, I am overweight...I believe this delayed my being diagnosed. I began having problems in 2005 (pain and rectal bleeding) - I had a barium enema in 2005 that showed early onset of IBD, colonoscopy in 2006 was normal - just said I had an irritable bowel. Since I had a history of endometriosis, the doctors said it was the cause of the pain and I had a hysterectomy. But the pain and swelling kept getting worse and I wound up in the ER 9/2009. CT scan revealed possible Crohn's in terminal ileum. Colonoscopy 12/2009 and biopsy confirmed Crohn's disease and according to my doctor, the ileum has stenosis and I am in an obstructive pattern.

My question is this...how has Crohn's affected your ability to work and has anyone had to change careers because of their disease? Also, can anyone describe the pain they experienced from being partially obstructed? I really would appreciate your input! You guys seem like a great bunch and the humor here is very uplifting! Not everyone enjoys potty humor, but to be a Crohnie you have to have a sense of humor! :)

Thanks for reading my post and I look forward to your responses!

Tammy
 
Hi Tammy :welcome: . Yes you have come to the right place for humour, information and lots of advice... I worked for 7 years after my first surgery, and then after my second surgery, I couldnt get my symptoms under control. Haven't worked in 10 years, don't really have to now but I do miss it. A particial or full bowel obstruction I have had both and are extremely painful, vomiting and most times end up in emergency and hospitalized for a few days. Not everyone gets the extreme pain, but it isnt fun, trust me.

I would say being a teacher would be hard to just leave the room, we do have a few teachers on here and a professor. I am sure they will pop in to give their advice. A lot of great people here, glad you found us and let us know how you are doing on the Humira. I have had Humira but didnt last for me. Cimzia isn't available here and probably wouldn't work me. Good luck on the Humira. Take care.
 
Thank you Jetta Lady! I have enjoyed reading many of your replies to posts...it seems like you have had an extensive run with CD. I am trying to avoid surgery - doctor says I already have scar tissue from female surgeries and doesn't want to add to it with bowel resections - but the pain is really bad! I don't know how much more I can take. Hopefully the Humira will help and I will get better!
 
I just got outta the hospital for a partial obstruction. Luckily I had been reading about symptoms to look out for and headed to the ER the second I started vomiting. It started out as discomfort that turned into full-blown stomach cramps and spasms that would come and go. My stomach would physically swell in places. If I had my hand on my stomach I could feel my bowel slowly portrude like a snake! It was totally creepy. And I was having crazt gurgling sounds mixed with sounds of gushing liquid running through my bowels. Tylenol wasn't doing much to help with the pain and I was having lower back pains as well. I was still able to pass some stool, but never felt "fulfilled" afterwards and wasn't passing any gas. The morning I decided to go to the Er I got really nauseous and threw up, so I knew things weren't right.

I'm similar to you in that my terminal ileum is really inflamed. Suregon says the narrowing is due to scar tissue and the GI thinks Humira will help with inflammation, but of course with this being my 2nd hospital visit I suspect increasing my Humira dosages and/or adding Imuran on top of it.

I'm still trying to figure out the working thing with this disease. I got sick over Christmas break and ended up taking the semester off from school because I was still in the hospital. Thankfully, I wasn't working while in school, but I am just now thinking about going back to school part-time and trying to find a part-time job and it's hard to think about how it will be possible when this disease is so unpredictable! I guess it's just one day at a time though :)
 
Hi Tammy,

From what I understand, the first year after diagnosis has special challenges. You really put your finger on one of them--worrying about the "what if". The best enemy to this is thinking about the "right now". Really! I was just diagnosed in December and with the pain, fatigue, urgency, etc. I was at the point of either quitting graduate school or taking medical leave until I could get my disease under control. Luckily my mentor was very understanding when I told him my condition and said, "take it one day at a time. I don't want you to take a month of leave only to come back still feeling badly so just take time as you need to". Amazingly, taking this advice I stopped saying things like "it's getting worse", which implies my health is inevitably going to keep declinging to instead saying, "I feel really bad right now". This disease is unpredictable so I have learned to embrace the fact that everything is temporary--when the flare is awful I tell myself I will get through it; when I have good days I just try to cherish them.

Also, you say you are a teacher. Is there any way for you to get a student aid or student teacher? My father was a teacher and one requirement for everyone in education is to have a year of student teaching--if you have the opportunity to take one under your wing it could be an immense help since there would be another adult in the classroom in case you need to run to the restroom, etc.

Best of luck but if this career is what you truly love, I think there is always a way to make things work for you.
 
Hi Tammy
and welcome

Wow! This story mirrors mine! I ended up with hysterectomy too, but it was the best thing I ever did, it reduced my pain considerably!
I was partially obstructed back in January and the pain! my god, like nothing I've ever felt before, even worse than childbirth! and that's saying something! I was projectile vomiting, couldn't stand up, extreme D, fever, hot sweats and bawling my eyes out!
I work in a special school with autistic kids, hard work but I love it and have never felt the need to give up my wonderful career, but I have teaching support assistants, so if I need to go, I have a back up! I told my employers from the start about my condition and everyone has been most accomodating! Employers have a duty of care to look after employees, especially those with a condition, so maybe they could get you an assistant as Ashlee suggested?
glad you found us, lots of support here
lotsa luv
Joan xxx
 
Hey guys! It's me btpingrey - they deleted my account...had to wait to get back on. Thanks for your responses so far.

Astra - I have no regrets about my hysterectomy...except that they left my ovaries and they wrapped around my bowel three times - had to have a resection to remove them. Wished they would have just taken everything out the first go around.

We don't get teacher's assistants in middle school...I am trying to go into Administration...maybe that will give me a little more flexibility. Don't know...I am just tired all the time. I feel bad for my family because it takes everything I have just to work...when I come home, all I can do is lay on the coach/bed...I'm exhausted and in constant pain.

I am sure I will figure a way to make all of this work out...I think having this forum will help tremendously...first of all having others to talk to about an illness most don't understand is a huge relief.
 
I really like what uab grad student had to say. I was diagnosed in October 2009 and while things have been on a general improvement trajectory since, it is still bumpy. The physical symptoms are one thing--pain, urgency, etc.-- but for me it's been the emotional roller coaster that is the most challenging. I take a medication and feel better and think, ok, got this licked! And then have a recurrence of a flare or an episode of vomiting and I feel like my life as I know it is over again. Kvetching on this forum has really helped a lot!

I work in education, on the administration side. I have only told my immediate boss and our division boss about the Crohn's. They have been really accommodating. There have been days when I feel well enough to work but not well enough to be more than 20 feet from a bathroom! I have been able to work from home on those days, keep up with my work load and yet keep the stress level down so I can heal. So far this is working out.

What I get about this disease is that it's a lot of trial and error; patience has never been my strong suit, so working on "going with the flow" (so to speak!)

Hang in there and let us know how things work out.

Lilly
 
Codebrown welcome back! Glad you kept trying and stuck it out. It happened to me 2 years ago when I first started, and I thought what did I do? :eek2:

It is tough, to work and having family, sometimes it is just the disease itself or you could be lacking Vitamin B12. I am assuming you have been checked for that. Iron is another culprit, having you blood work dont regularly helps. Not fun when you are on constant pain. Hope you feel better soon!
 
Lilly I know how you feel about the thinking you have it licked and BAM...the rug gets snatched right out from under you. My husband keeps asking me how I am feeling (after taking the Humira on Friday)...I told him I was okay, but I don't want to get my hopes up too high...don't think I can handle the disappointment right now. I am just going to take it one day at a time.

I am applying for some Assistant Principal jobs...just finished my degree/certification in administration in December...hopefully something will come up. I am looking into other things as well...software development in education, text editing/writing, etc. I am determined to continue with a career of some sort, but am coming to grips with the fact that it may not necessarily be in the classroom. I would love to hear how you moved into administration.

Thanks for your post...Tammy
 
Jettalady said:
Codebrown welcome back! Glad you kept trying and stuck it out. It happened to me 2 years ago when I first started, and I thought what did I do? :eek2:

It is tough, to work and having family, sometimes it is just the disease itself or you could be lacking Vitamin B12. I am assuming you have been checked for that. Iron is another culprit, having you blood work dont regularly helps. Not fun when you are on constant pain. Hope you feel better soon!
Click to expand...

Yes, I am on Vitamin B-12 injections (biweekly) since my ileum is affected. I also take a good Women's Multi-Vitamin, which my GI says is why my blood work is so good. I am sure most of it has to do with chronic pain and the work my body is having to do right now. I am also eating yogurt and considering trying prebiotics. My GI thought this would be a good thing and encouraged me to go for it. But Jettalady, I have the most AMAZING husband! I don't know what I would do if it wasn't for him. Now just trying to determine if I should move closer to family...don't want to be too much of a burden to him. Any thoughts?
 
I am happy you have a wonderful husband, because I thought I landed the one in a billion lol. I too am grateful for him and don't even want to think about ever being without him. What ever decision you make to make yourself happy I am sure he will be happy to see that you are looking forward to being closer to family. Support means alot to a Crohnie, and can never get enough! I am was on probiotics too, expensive ones but taking a break from them to see if they were working. Rest is very important too. I used to be a clean fanatic and worried all the time... I had to let that go, being healthy was far more important. Anything I can help you with any questions you can pm me too. Best of luck! Hang in there !
 
I used to be a clean freak too...I'm learning to let it go...do what I can when I can. It has been a huge adjustment for me though. What kind of probiotics were you on?

Thanks for the all the advice!
 
Hi Tammy
welcome back!

shame they didn't take your ovaries then, I had fibro adenoma on mine so had no choice, but I asked for uterus and cervix to go too, I told him, 'why not? it's like having a bike with no wheels!'
hey, good luck with the Humira!
and hope you can get the work situation sorted soon.
hang on in there
Joan xxx
 
I was made redundant - they closed the whole office, a few months after I 'went symptomatic' (dec/08)... I was having trouble remembering stuff and being able to think clearly, and it had a really negative effect on my work. Not good being a software engineer. I had one interview last year but thankfully really didn't get it. The methotrexate as well as not doing anything for me put me into a kind of zombie state. I'd really not recommend the stuff, as since being off it I don't think I've really recovered the brain 'brightness' I had before it, or Crohn's.

The way things are going I don't think I'm going to be able to get back into that industry.
 
CodeBrown said:
I used to be a clean freak too...I'm learning to let it go...do what I can when I can. It has been a huge adjustment for me though. What kind of probiotics were you on?

Thanks for the all the advice!
Click to expand...


No problem! I was on VSL#3 the highest active probiotics 450 million. You take it according to the amount of bms. Even healthy people benefit from it. The cost is about $203.00 shipping, and taxes included for two boxes. But I heard if you get a script from your doctor for double dose some insurances will cover it. No such thing here in Canada :( .
 
Astra - I don't blame you for having the other things taken out...although sometimes I wished I could have kept mine - my bladder really misses the support. :)

Beth - what is methotrexate? I know about the sharpness thing - at first I thought it was just a part of aging, but I know it's not...I work very hard to keep sharp by doing Sudoku, and other brain challenges. I hope you are able to find something that you enjoy doing and that you feel you will be able to do.

Jetta - WOW...that's quite a bit of money. I will have to see if Tricare (military insurance) will cover it. I didn't realize probiotics were so expensive.
 
Tammy - Probiotics don't have to be that expensive. VSL is just a really high quality kind. You can find probiotics at your local grocery store or organic supermarket as well. I've been taking a store bought kind and it seems to help me digest after meals. I think VSL is so expensive because it contains 450 billion actibv bacteria whereas the kinds you buy from the grocery store are only going to have a couple billion at the most. I would say if you want to try it out and don't have the money to get the strong kind, you could always go with the store bought kind and see if it helps you any. Couldn't hurt :)
 
Thanks Marisa! I will try that out...I have been eating yogurt - especially since I just finished a round of antibiotics. It is supposed to have probiotics, but I am thinking something a little more heavy duty.

Beth - funny thing is I actually looked it up on wikepedia after your post. :) Great minds think alike (even if they are dull from time to time) :)
 
Acidophilus is also a good bacteria replacer after taking antibiotics. You can also get those supplements at the grocery store :) I'm taking Spring Valley brand and they have acidophilus and multi enzyme probiotics that go together (or you can take them separately too).

Only thing I dislike about the probiotics that I have are that the directions say to take 3 tablets before or after each meal. That's a lot of pills to remember to take during the day! My mom sent them in a care package for me so I've been using them anyway so they wouldn't go to waste. But my next bottle I'm definitely going to look for something that I only have to take once or twice a day! So, whatever brand you possibly try keep that in mind and check the label before you buy. :)
 
Hello I am 57 years old and I am a Department manager.I was diagnosed with crohnes desease about 2years ago,I have been on sulphasalazine, steroids, pentasa,mesalazine,im still on methatrexate due to the pains and joint stiffness and swelling I get,I also have to take protium to stop me vomiting due to acid,and my doctors have just realised I have fistulising crohns,and have just finished antibiotics taken for 6 weeks.I am now going on to infliximab when they get there act together.
I am in so much pain with my joints that I feel I can't keep working, I wont go sick and just keep on struggling to do my job as I am on my feet all day,if I lost my job I would struggle at my age to get another and I can't afford to not work.
 
CodeBrown said:
Don't know...I am just tired all the time. I feel bad for my family because it takes everything I have just to work...when I come home, all I can do is lay on the coach/bed...I'm exhausted and in constant pain.

I am sure I will figure a way to make all of this work out...I think having this forum will help tremendously...first of all having others to talk to about an illness most don't understand is a huge relief.
Click to expand...

This totally sounded like me! I just quit my job and am working from home. I just couldn't do it any more. All my energy went into work an I wasn't enjoying life at all.

Good luck in whatever you decide to do. I hope things get better for you. It is a hard decision to make especially when you really love your job.
 
Tammy,

I teach two nights a week at a vocational school, thankfully my last class was in mid April for this year because it was just killing me. I found talking loudly made me nauseous. Luckily I taught grownups and I was able to excuse myself.

Any sort of job is going to be hard with Crohn's, if you are flaring. Except maybe a Charmin tester. lol!

My day job is physical, I work with tools and it's heavy work. There was a time a few weeks ago when I literally would work for 30 minutes and sit in my truck with the a/c on for 5. Thankfully the predinison was like Popeye eating spinach. Tomorrow I take 5 MG and will be done in a week. fingers crossed!

Good luck to you.
 
[email protected] said:
Hello I am 57 years old and I am a Department manager.I was diagnosed with crohnes desease about 2years ago,I have been on sulphasalazine, steroids, pentasa,mesalazine,im still on methatrexate due to the pains and joint stiffness and swelling I get,I also have to take protium to stop me vomiting due to acid,and my doctors have just realised I have fistulising crohns,and have just finished antibiotics taken for 6 weeks.I am now going on to infliximab when they get there act together.
I am in so much pain with my joints that I feel I can't keep working, I wont go sick and just keep on struggling to do my job as I am on my feet all day,if I lost my job I would struggle at my age to get another and I can't afford to not work.
Click to expand...

Dianne, Welcome to the forum. Just as a suggestion, you may want to start your own thread so people can say hi. Sorry about what you are going through it sounds really difficult. I had bad joint pain and prednison cleared that up for me. But they don't like for you to be on it for a long time.

Good luck!
 
Hi there. I totally understand you. I am a school teacher too. I teach elementry. I have switched to a different school as i found that they were not supportive enough. My new school is great. I am on pentasa at the moment and am feeling good. I do though sometimes need to visit the toilet and have a really supportive neighbouring teacher.
I've cut my days down to 4 days a week which helps with the stress levels and just the day to day face to face.
You mention you are overweight. I too was. I found by losing even 5 kgs my body felt better. Maybe it was just being healthier.
Instead of doing admin is there a way that you could retrain to teach one on one and specialise. I am currently doing that for next year. Having a class of 27 is a big load and i find stress aggravates it.
 
CodeBrown said:
I used to be a clean freak too...I'm learning to let it go...do what I can when I can. It has been a huge adjustment for me though. What kind of probiotics were you on?

Thanks for the all the advice!
Click to expand...

Oh, i had to do the same thing with cleaning. i had a friend who came and cleaned my house for me one weekend when i just couldn't even barely move. it was so sweet of her. now, i just clean a little at a time.

i am a teacher (in an infant classroom) and a professor. i do find that on days i teach the little ones and the college course, i am completely exhausted. those are the days i wonder how long i will be able to do it. but, i enjoy what i am doing and hoping that as time goes on, my body will adjust more. luckily i have the summer off to get lots of rest (and teach a course online). :)
 
May 27, 2010

Tammy:

Greetings. I can relate to some of your specific challenges so I will simply lay out my experiences and then suggest specific answers to your questions. If you need to discuss it some more – just let me know – it would be my pleasure to help you.

I had my Terminal Ileum REMOVED approximately 10 years ago after too many 3 AM Hospital Runs and the complete unpredictability it was causing in my personal and professional lives (I was an attorney at a medium-sized firm with a rigid atmosphere). While doctors do not like removing the Terminal Ileum (“TI”) for a variety of reasons including, but not limited to, Absorption issues and the fact that it “Binds your Bile Salts,” I felt as if I did not have a choice. I wanted a LIFE and if this one specific area of my body was repeatedly ruing my Quality Of Life (“QOL”) despite trying EVERYTHING to fix it – I opted for surgery. Thankfully it was successful but that new found piece of mind came with some INITIAL serious challenges such as constant diarrhea, badly smelling bile and a constant rectal itch.

We finally figured out that I needed to take a drug called “Colestid” to Bind my Bile Salts – and that stopped the diarrhea immediately – and it was AMAZING. I take 4-5 pills a day – and I am fine. It also helps keep the smell somewhat normal since it helps break down “Fat” – which my body can no longer do very efficiently due to the removal of the TI. The rectal itch thing was more an annoyance than anything else but it was pretty serious and most definitely affected my QOL! Once I figured out that ALL prescribed Rectum “Creams” are made with Alcohol and that all that was doing was aggravating the situation – I simply started using Ointment-forms of the same medications and then the problem became tolerable. I also must give myself B-12 shots a few times a month as a result if having my TI removed.

Being a teacher in the environment you described sounds quite challenging in your present condition but I would think it is POSSIBLE but would require tremendous discipline in terms of being very careful what you eat and when you eat it so that you can regulate our bathroom needs. You just have to be honest with yourself and what you will really do. I say this assuming you clear up the Terminal Ileum problem or have it removed.

I used to take Remicade but grew allergic to it; then moved to Humira and after having GREAT success with it I started getting Asthma-like symptoms so I presently take Cimzia and it works GREAT. That just goes to show you that these drugs are so individualized.

Now, more specific answers to your questions:

1. Crohn’s Disease did not affect my Professional choices (although my dreams of being a Calvin Klein Underwear model were certainly DASHED!) when I was younger but at 47 I find that the Auto-Immune component of the Disease unexpectedly “grounds” me on certain days so I am coincidentally pondering a Career Switch at the Moment to becoming a full-time Health “Video/Print Journalist.” I used to take great pride in not letting the Disease force my hand with ANYTHING but then maturity set in and I now try to be more realistic. To that end, if you LOVE teaching and helping people learn such that your life would be unfulfilled if you left the profession, I would figure out some kind of teaching job that affords you the flexibility to split temporally to use the bathroom such as Tutoring, Private Teaching, etc. There has to be some “subset” of the profession that will fit your “challenges.” On the other hand, you have a “Disability” and if you are good at what you do and you are a nice person (I say this because I have found it is far more effective to use your Crohn’s Disease as a “Sword” and NOT as a “Weapon” because you want people “rooting for you” as opposed to “tolerating you”) – I am sure that your employers will make reasonable accommodations for you and your students will respect you IMMENSELY for battling it and telling them about your battle. Either way, you can’t go wrong and you should not feel bad if you choose to leave teaching for another profession that would cause you less anxiety. Such a choice would be totally appropriate.

2. Being “Partially Obstructed” from a Pain perspective is like being “Almost Pregnant” – there is usually not much of a difference. As you may already know, being completely Obstructed can feel like trying to pass a Softball through a Kinked Garden Hose. It can hurt like HELL and MANY bad things can happen while you are trying to “pass it” through. Sometimes Scar tissue will cause that for me and somehow my intestines move around a bit and it abates but if YOUR Partial Obstruction is a COINSTANT – well – then you have to deal with it because it can turn into a Total Obstruction and that can turn into a Perforation and that would most certainly solve Question Number One because you likely won’t have to worry about a Career where you may be going. (I am JOKING and just trying to add a little levity to the situation.)

A long-winded answer but I hope it gives you additional perspective and please do not hesitate to contact me.
 
Thanks for all the replies! I apologize for being out of the loop for the past week or so...things have been very busy my way. I am taking some time off work - it is amazing how things kind of work themselves out. I am looking into the possibility of starting my own business - I have wanted to do it for some time. I am going to also look at teaching privately and tutoring, as well as other things. Any suggestions on how to do this would be greatly appreciated!

Diane - sorry to hear you are having such a rough time right now - how did they find out you had fistulas? I suspect I have something of the sort going on, but not sure how they check for it.

Crohnicaly Stinky - I love the part about the Charmin Tester - I love my Charmin...No John Wayne toilet paper here. I hope you enjoy your time off and things get better. My doctor put me out of work for two weeks - it has been good, but I am still so tired and weak...I go back tomorrow, and I am so not ready...but school will be done in two weeks.

Cins, I am glad you found a school that is more supportive of your condition. I think I am going to take a break from teaching for awhile...need to get better...teaching takes so much out of you and with all the crazy changes going on right now (no money), things are getting pretty difficult (40 students in a classroom, no supplies, and very high expectations for student achievement = a lot of stress - I have no energy for working miracles right now).

Belle - I am going to keep my eyes open for a college teaching position (adjunct). I think that would be perfect for me right now.

Michael- thanks for the long reply...I found it very interesting. My doc is going to give me a few more months on Humira and if the pain is still affecting my life, then he is going to refer me to a surgeon. I am worried about this - how bad is they diarrhea, etc? Were you having lots of diarrhea before the surgery? Like you, they would remove my terminal ileum. I am already on Vitamin B 12 shots.

I am in constant pain - I have labor like cramps for hours after bowel movements - not sure why after other than things are moving through - but it hurts like HELL. I had my first child naturally and swore I would never do such a foolish thing again - but it seems I relive that pain daily.

I appreciate your insight into my career situation - I love teaching, but I love my family more and at this point, I need to be there more for them. Teaching takes too much out of me - will look for other options.

So what made you want to go into health video production? I worked in corporate communications before teaching - loved it! Am thinking about doing some graphic arts/writing as an independent contractor...would love to work for a textbook company and am going to keep my eyes open for something along those lines.

Well, sorry for my long post - will check more frequently for replies!

Thanks and hope you all enjoyed your Memorial Day weekend!

Tammy
 

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