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[shambelle]

I have a very long, somewhat gross, but important story about my battle with Crohn's disease. I'd love to put all of it here (it would be a terribly long post, I think), but I wanted to see if there was anyone else here who is currently dealing with Crohn's.

In brief, I'll say that I nearly died from an abscess in August 2007, just had my 4th operation 2 weeks ago, and my surgeries have included surgical drains, a double fistulotomy, and a fissure repair/tissue erosion operation. Surgery #5 is coming in August. I have most of the classic symptoms and problems of Crohn's, but I have the abscessing/fistulizing type, which makes life kind of tough.

I wasn't diagnosed until December 19, 2008 - I can't believe its only been 6 months. My doctors think I've actually been sick for 10 years, but didn't really get symptomatic until that day I was in septic shock. There were signs, but I ignored them - I think a lot of us do.

This disease has made me feel embarrassed and humiliated. Its been debilitating and demeaning. I got dumped by someone I had been with for 7 years - and was engaged to marry - 2 weeks after my original sepsis incident. I have gone down into the depth of a pit of depression, I have taken so many drugs, and still do. I feel like I'm 81 instead of 31. It doesn't always help that I'm a scientist - sometimes, I feel like I know too much of what's going on with me, of what the medications are doing to me, of what lies ahead.

I start Remicade on Monday. I am hopeful, but I am still struggling. We are such a pill-driven society, and its really taken a lot to get my head around the fact that the pills don't work for me and I have to take treatment by IV. It seems unreal; I'm sure it will sink in during that first infusion.

I know there are a lot of us out there, either with Crohn's or ulcerative colitis. I've actually met quite a few at my university (to top it all off, I just finished my first year as faculty. Oy), but I am constantly searching for more people to share their experiences with me.

I want to know everything - how you deal with those days where you're running to the bathroom 10 times, but you have to teach a 3 hour class.... to what happens when you're in too much pain to sit (this may be unique to me - my 4 operations have all been rectal).... to how your colleagues deal with you and your needs... to how you find it in yourself to grade that stack of papers when all you want to do is sleep.

I'm lucky. I met someone new who is more supportive then I could have ever dreamed. I have an amazing medical team, and I'm involved in my local chapter of the CCFA. But there are some things that I can't always talk about with friends that aren't in academia and dealing with Crohn's.

There's no need to post publically in response - please feel free to send me a private note if you'd like to talk. I am fighting this stupid disease constantly, and I know some of you are too.

I look forward to any responses. We may not have a cure, but we can have each other.   :)

[paddington_bear]

Sorry to hear about your diagnosis, but it sounds like you are handling things really well. I have no experience with Crohn's, but I have had ulcerative colitis for nine years. I guess I might have had it long before that, but I was diagnosed about 9 years ago, right after I moved to Paddington-ville. I always thought that what I had was just a "nervous stomach," but then when I lived in CA, my stomach issues increased, waking up with pain, etc. The nurse practitioner where I was getting my PhD thought that it was an ulcer or something, and the symptoms went away. I move here, and in the course of about 3 or 4 months, I got sick. Couldn't really eat foods except soup, had cramps, wasn't sleeping, etc. And I lost about 20 or so pounds. My internist/general practitioner scheduled an upper GI series (the barium drink) and a sigmoidoscopy, then a colonoscopy. Voila! Diagnosed with ulcerative colitis. The GI guy who did the colonoscopy said that he could tell right away. Was put on steroids to calm everything down, and now I'm just on Asacol. It seems to work relatively well most of the time. I don't really have bad, bad flare-ups. But I do wish that I could have a normal relationship with food/my bowels/the bathroom, like everyone else! When I'm not feeling well, I feel the shadow of colon cancer hanging over me, as, apparently, those who are UC/IBS sufferers are more inclined to get it. But otherwise, I'm pretty good, thank goodness.

My diet hasn't changed all that much. I was never an eat-till-I'm-stuffed person, but now I definitely don't. And high fiber cereals are a big no-no! Dairy doesn't really bother me, but I use lactose-free milk for my cereal.  In the initial stages of being sick, and when I have flare-ups, the prospect of teaching a 50-minute class, sitting in a meeting, or even walking to work, freaked/freaks me out. But I have tricks. I don't eat before I teach, or before a meeting. And I keep Immodium in my office desk and in my bag. :)  Mornings seem to be rougher for me, as my digestive system needs to get itself in gear again after resting all night. By midday I usually feel good and my guts are still. Like George Constanza, I have become intimately familiar with all the restrooms in my building, in other buildings I teach in, in the grocery store, in the Target, in the movie theater, in the mall, etc. :) :) My colleagues don't know, since I was - fortunately - never sick enough to require taking time off. My friends don't know either. (Although I have another colonoscopy -- my third -- scheduled for next month, and I'll need to get someone to drive me to and from the hospital. I could just do what I've done before and say that I'm having a "procedure" done that doesn't allow me to drive afterwards, but I also sometimes ask myself why I'm hiding what the "procedure" is.)

Mostly my life hasn't changed thatmuch. (Again, I realize I'm really lucky. I used to belong to a yahoo group for those with u.c., but all of the stories about others who were having a harder time scared me.) When I'm not up to par, even walking from my house to work -- about a 4-minute walk -- makes me anxious, since there are no porta-potties along the way! Two years ago I went on vacation with my family in Africa. Imagine the nightmares I had before I left about needing a bathroom while on safari! But I felt pretty good the whole time. The same for when I was in Shanghai. Sightseeing and trying to find a bathroom - in a hurry - in Shanghai? But again, no problem. I do think that I'd be even more normal if I radically changed my diet. Drinking mint tea in the morning, or after dinner, helps. And my doctor wants me to try weaning myself off my meds. I was waiting for the end of the semester - now - to do that, since stress  (and PMS) sends my guts into turmoil.

Okay, I've rattled on enough. You're that diseases like Crohn's/UC/IBS are embarrassing. And stressful. Sometimes I just don't know what I'll eat that will set me off, and I hope that I'm close to a bathroom - preferably my own - when I need one. You have support, shambelle! 

paddington (u.c. sufferer since 2000)

[cranefly]

I've got UC. I got diagnosed about 10 years ago after 10 years of suffering and putting up with doctors who told me it was in my head.
I have been in remission for years (more or less-- I occasionally get flare-ups of groups of ulcers in my mouth, so I assume it's also flaring elsewhere, and I occasionally still get bloody stools,  but it's not causing major problems).

A few things helped me: B12 injections, giving up meat, wheat and certain other foods that I noticed caused me problems, and doing Pentasa enemas for a few weeks when I was flaring. Learn to control your stress levels as much as possible. When I have problems, I will liquid fast for a week or so. It seems to help, giving my system a rest (protein shakes, juice, soup). Honestly, the enemas really helped, as nasty as they were.

Get yourself a smartPhone with GPS and download an app that shows you the nearest bathroom. Seriously. You will feel a lot less trapped/tied to your home when you know where you can "go" in a hurry!

And you'll find a much better guy than the jerk who dumped you. Honestly, he did you a favour by showing his true colours before you got married!

[chalee]

I don't have Crohn's myself, but both my Mom and my sister do. My sister has the fistulae like you do and while it's challenging to manage, she has done fairly well with medication, two surgeries involving placement of an o-ring, and she even had two successful pregnancies (although delivery had to be by c-section). One thing to be aware of is that college campuses (and students) are awash in contagious illnesses, and as someone with an out-of-whack immune system, you'll want to take lots of precautions against cold, strep, flu,mono, etc. Last thing you need when you're already managing a chronic illness. Both my Mom and sister work in school settings, and exposure to germs has made things a bit tougher. In fact, my sister moved from classroom teaching to administrative work recently mainly for this reason.

Best of luck to you and I'm glad to hear that you're building a supportive network for yourself. Crohn's is a truly devasting illness but it can be managed. Try to get as much rest as you can during the summer...

[shambelle]

Thank you all for the responses!!  :)

I'm definitely worried about going through such a level of immunosuppression and working in a college environment. I have about 500 students a semester... and they are VERY germy. I use a ton of hand sanitizer, and I am very open about my illness with my students. This has actually really helped - I ask that if anyone is sick, to please email or call me instead, and they listen. Since I teach biology and most of my students are pre-med, they're more interested in the disease and what I go through then anything else. I've even found out that there are quite a few fellow Crohnie's who are my students, too. They have been very happy to talk to me, to see that as sick as I've been, I didn't let it stop me from reaching my career goal!

It's funny - some people have told me not to be open about this, and others have said it's the best thing to do. I actually went to a talk at my local CCFA support group where a lawyer came to talk about FMLA and the ADA, and her advice was be open and honest, at least with your direct superior. My chairman knows everything, but so do most of my colleagues. It was, and still is, for the time being, so incredibly obvious that I'm sick, so I figured there was no point in hiding it. That, and I really see it as an educational opportunity - my own personal teachable moment.

I've been doing the B12 injections monthly, though I'll have to move to every 3 weeks soon. I don't give them to myself yet, but when I hit the 6 month mark of injections in June, my GI doctor says that I can start learning to self-administer. I'm a little weirded out by that, but I have several friends who have volunteered to help me get over that initial hurdle. I also take a ton of iron (I mean... 600-700% of the daily) because I am crazily anemic. For the first time in 2 years, my hematocrit has finally started to inch upwards. I hadn't thought about giving up meat - partly because I eat it for the iron. I'd been on a very low red meat diet for a while just because it wasn't something I felt like eating, but I've found that I seem to be okay as I've reintroduced it.

The bathroom map thing is a great idea, something that I'll definitely look in to. I've found that most people are pretty understanding - I'm going to a meeting in early June, told the coordinator my issues, and they said that if possible, they'll try and get me into a place to stay with a private bathroom (we stay on campus for the meeting where the bathroom is shared).

Controlling the stress... is a whole other thing. I think that things will get easier, since I just finished my first year on the faculty, and wow, was that stressful! I've learned to be much less stressed than I used to be, but it's still a very learned skill and I'm not quite there yet.

I miss salad. I never in a million years thought I'd be saying that!

It's good to hear that you've found a way to manage your UC, cranefly and paddington! I have a very good friend and colleague with UC, and he's doing well too - so that serves as inspiration for me. Chalee, I'm sure your mom and sister appreciate your support so much!

As a not meant to be rude aside - are any of you Jewish, too? Before I could ever have a colonoscopy and be diagnosed, back in September 2007, I met a different GI doc from the one I have now, and the first thing she asked me was what my background is - and when I said I'm a Russian/Polish Jew - she said that she was going to tentatively diagnose me with Crohn's. It wasn't until that night when I went home and researched that I realized we are the major population of Crohn's in the world.

[spork]

A few suggestions:

B-12 injections are very simple to self-administer.  I'm surprised you were told you had to wait 6 months before doing them yourself.

If you haven't already, get a serum ferritin test to check if the iron you are taking orally is being absorbed.  If it's not, get the iron infused.

If the Remicade infusions are impossible to schedule (depending on your location, you might get a clinic 10 minutes away that infuses 5 days a week or a physician's office 2 hours away that only infuses on Tuesday and Thursday mornings), you can switch to Humira, which is a self-administered injection.

Depending on your age and how long you've been sick, a bone density scan might be useful.  Even if a physician poo-poos the idea of a scan, I recommend calcium citrate, vitamin D, and magnesium supplements.  About half the U.S. population is vitamin D deficient, and those are people without gut problems.

[shambelle]

Hey spork.   :)

Making me come to the clinic for B12 is one of the many ways my GI doc can keep an eye on me. I'm being watched extremely closely, since I have some other counfounding factors.

My iron is being absorbed - the ferritin test is part of my usual regimen. :)
If I have to move to infused iron, I will, but values at the moment are kind of useless being that I'm still only 3 weeks post-op. I always dip, and then come back up. There's still hope!

I do my Remicade in my GI clinic. Since I'm on a campus with a hospital, I walk 5 minutes across the street. Very easy!
Remicade is really the way for me to go because of my abscess/fistula thing. No one's sure that Humira will do me much good, though who really knows.

I take 5 billion supplements. :)
The odd thing is that - and we have no idea why - my vitamin D is perfect. Everyone just kind of looked at my latest labs 5 times to make sure it was true, but at least for the time being, that's not a problem I have! I still take it anyway. I've done a magnesium infusion... and I'm hoping I don't have to do that again!

Thanks!!  :)

A few suggestions:

B-12 injections are very simple to self-administer.  I'm surprised you were told you had to wait 6 months before doing them yourself.

If you haven't already, get a serum ferritin test to check if the iron you are taking orally is being absorbed.  If it's not, get the iron infused.

If the Remicade infusions are impossible to schedule (depending on your location, you might get a clinic 10 minutes away that infuses 5 days a week or a physician's office 2 hours away that only infuses on Tuesday and Thursday mornings), you can switch to Humira, which is a self-administered injection.

Depending on your age and how long you've been sick, a bone density scan might be useful.  Even if a physician poo-poos the idea of a scan, I recommend calcium citrate, vitamin D, and magnesium supplements.  About half the U.S. population is vitamin D deficient, and those are people without gut problems.

[psychdiva]

Shambelle, I'm sorry you've had to join this rotten club. I was diagnosed with Crohn's in 2000, after being symptomatic to some extent for at least 10 years. Like so many of us IBDers, I'd been given many incorrect diagnoses until I finally got so incredibly sick that my effing HMO let me see a specialist, a GI doc who scheduled me for a colonoscopy with biopsies. When I got the Crohn's diagnosis, I was terrified but on the other hand, the medication (Asacol) made me feel better than I had felt in a long, long time. Since then, I've been pretty stable on Asacol. Oddly, I can eat pretty much anything I want - no food makes things worse, or better. Stress seems to be the most reliable trigger for my flares. When I have flares, they consist mostly of joint pain, deep fatigue and diarrhea. I consider myself very fortunate to have avoided surgery, fistulas, etc [knocks on wood] but of course none of us know what the future holds.

Yup, I'm an Ashkenazic Jew whose family hails from Russia and Poland.

I never feel very energetic and have started to wonder whether that is Crohns-related rather than a matter of temperament (or my other major ailment, major depressive disorder). My beloved GI doc moved away and I'm in the process of finding a new one. As soon as I do, I'll ask to have B12, iron, etc, checked. (I had an initial appointment a few weeks ago with a GI doc who came highly recommended but he was, pardon the ironic pun, an ass: so cold and brusque and rushed that I knew within moments I would not return.)

At the start of a new semester, I tell undergrads that I have an autoimmune disorder that might require me to take frequent breaks. I stopped saying any more than that after getting some snickering and deciding not to trust large groups of undergrads with what feels like a very personal matter. I do tell grad students that I have Crohns.

Feel free to reach me with any questions. I'd love to hear how you manage stress.

[rainydaysandmondays]

I was diagnosed with ulcerative colitis this past Dec., and so I'm new at learning how to deal.  (Buying a smartphone with GPS capability is an excellent idea.  I'll shelve it for when I get a real job.)  This was my first year on the job market, and I was actually relieved that I didn't get an MLA interview, because I was sick and had just started on Asacol.  Fortunately, my part time teaching gig didn't start until January.  I was doing a lot better last term in terms of UC symptoms but I was really tired.  I taught for 4 hours straight at night, and I really struggled with having to seem articulate.  I also sometimes had trouble remembering what students had said during discussion.  I blanked out on names, too.  As it turns out, I developed iron deficiency anemia on account of the bleeding.  I didn't tell my department Chair that I have any sort of medical problem, but I think I probably should have.  It's always difficult..I want people to understand that I'm not on top of my game.  But I don't want people to think that I'm sick especially because I have other chronic health issues.  Also, I believe I'm pretty good at compensating.  I don't *seem* sick.

I also didn't tell my referees other than my thesis supervisor ("dissertation director" in the US).  It's always hard to predict how people will react.  My thesis supervisor really understands the issue, so I'm glad I told her.  I find that some people 'judge' severity of an illness on the basis of how someone *appears*.  When I've told friends that I've been sick, I've sometimes got a well-meaning "But you look well!"  Other people equate autoimmune diseases with having a weak immune system and being in general "ill" and "weak."  Annoying. 

I feel for those of you on prednisone or remicaid.  My doctor nearly went that route with me because of the iron deficiency + because I'm not totally better on Asacol.  But he examined part of my colon, and it seems that the inflammation and bleeding have disappeared at least in those areas.  So I'm off the hook for now. 

I'm seriously starting to consider going to a naturopath in hopes of avoiding any immunosuppresants.  I exercise a lot, get lots of sun (vitamin D).  I don't know what else I can do except hope for the best.  It is scary not knowing what lies ahead. 

[babyshambles]

hi shambelle,
just joined and learning to use this forum. not sure where to start .these last few months have been hell!!
i have been very ill with persistant diarrhea and had a colonoscopy last week and was diagnosed with crohn's disease.
i was pregnant till last month but sadly i lost my baby. she was 33weeks. the last two months or so i was very ill with cramping and diarrhea and was really worried it was effecting my baby. everything seemed to settle down after i had Chloe which is a mystery to me so thought it was linked somehow.seemed to be ok for a couple of weeks then started to feel unwell again but no where near as bad as when pregnant. i now have to have an MRI scan soon. and also will be getting results of my baby's post Morten.have always been healthy person so don't know why this has happened.also was told i was anemic during my pregnancy. get quiet stressed so worried this cause flareup. think i am still in denial about having crohn's.  not sure what i should avoid eating or how serious it is yet. any advice you can give would be greatly appreciated.

thanks!!

[psychdiva]

any advice you can give would be greatly appreciated.

Babyshambles, people very so much in terms of their symptoms, treatment and course, but FWIW, here's what I've found to be useful in the 9 years since I was first diagnosed with Crohns:

It is essential that you find a gastroenterologist who you trust and like. Do not settle for someone who brushes off your questions or doesn't take the time to educate you about the disease. Do not settle for someone who takes weeks to get you in for an appointment when you are actively symptomatic. Do not settle for someone who is unwilling to try various medication regimens until you get adequate relief.

Some of us can eat anything we want and some of us cannot tolerate various sorts of foods (high fiber is a problem for some). Experiment to see what works for you. Try to eat a balanced diet. My symptoms get much worse if I eat fried foods but otherwise I can eat just about anything. Ask your doctor about whether certain probiotics and vitamin supplements would be appropriate for you - many of us "Crohnies" need them.

Make sure that your GI doc tests you, annually if not more often, for various vitamin defiencies, iron levels, kidney function, etc.

For many of us, certain kinds of stressors will bring on a flare of symptoms: sleep deprivation for some, anxiety for some, etc. Over time, you may be able to identify the ones that precipitate your flares. Take good care of your immune system: get enough rest, make time for relaxation and stress management, exercise, etc.

Look on Amazon to find a reasonably current book on living with Crohns - there are several good ones.

I'm so sorry about your baby! Please feel free to PM me if I can help with questions about Crohn's. Take good care of yourself.

[crohnssolutions]

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

[oseph]

I feel for those of you with Crohn's - I went through severe IBS for about eight years, and I know it pales in comparison with what you all are dealing with.

I think it's pretty clear that nobody really knows much about how IBS/Crohn's/UC and all that are related.  My mother and I both have had IBS - she also had UC, to the point of hospitalization, and I had severe gastritis for three years.  Between the two of us, we've got some pretty embarrassing and sad stories to tell.

You might check out Heather Van Vorous' website if you haven't already.  There's a very nice community over there.

My best luck getting treated was when my gynecologist coordinated with my neurologist, a psychiatrist, and a reproductive endocrinologist.  They suspected, based on timing, that the following conditions were related:  1) IBS, 2) acute gastritis, 3) anxiety, depression, and insomnia, 4) pre-diabetes (messed up glucose and cortisol levels), 5) weight gain, 6) infertility coupled with irregular menstruation (messed up hormones), and 7) migraines and tension headaches.  They all had a conversation and worked with each other to come up with medications, therapy (physical and emotional), and behavior-altering practices (like getting more sleep).  After a few months, I had lost weight, started sleeping and not panicking, my migraines were significantly reduced, and I had very few IBS attacks - and I got pregnant.  Since the pregnancy, during which I felt pretty good, I've gone back on a couple of the medications, and I've maintained the stability I achieved right before getting pregnant, with only a few incidents.  Anyway, the point of all this is that it seems all to have been related, probably stemming from problems with my endocrine system, and it took a team of doctors at a world-class medical school to figure out what the hell to do with me.  If you have any of these symptoms I've mentioned, in addition to IBS, you might want to see about getting your doctors to agree to a conversation about coordinating treatment.

Good luck all - it's a hard road.

[psychdiva]

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

Untreated or insufficiently treated Crohn's can lead to irreversible complications and even death. CAM can play a vital role in the treatment of Crohn's and UC, but someone who discontinues allopathic medications against medical advice is probably playing with fire.

[shambelle]

I would most likely be dead without my medications, plain and simple.

As a scientist, I too have become well-educated on what the drugs do to me. The benefits far outweigh the risks, in my opinion. I come from the opposite school of thought - I have always discounted CAM - and probably will for some time to come. My mother continuously asks me to stop taking my medications and to go the CAM route, despite being told that doing so would most certainly end my life. A lot of the information my mother has (note: my dad is a physician, and with my background, she's surrounded by science) is what I consider to be "junk science". I'm not discounting all of CAM or other alternatives, but there really is something to be said for what I consider to be more "real" medicine, i.e. drugs.

Being alive is worth the side effects. Is that selfish? Perhaps - but my GI doc - who will be working closely with both my surgeon and my gynecologist once I am pregnant - has said that the worth thing I can do to my unborn child is not treat my disease. That's enough for me to realize what I needed to do, and what I will continue to do.

I am a pharmacist and I have Crohns disease. I went through it all and back. It's not easy to be able to do your job at work and at home. The moment I found that I have Crohns I knew that I don't want to be on medications forever. There had to be another way. It's unusual to hear this from a conventionally trained pharmacist. But I was looking for more natural ways to heal my condition. I found great success with acupuncture, herbal prepartions, homeopathic medications, yoga, breathing techniques and many more. I started my own site and I add more and more interesting information to it. I hope you will find it very helpful http://www.journey-with-crohns-disease.com. I wish you all the best

Untreated or insufficiently treated Crohn's can lead to irreversible complications and even death. CAM can play a vital role in the treatment of Crohn's and UC, but someone who discontinues allopathic medications against medical advice is probably playing with fire.