1001 Crohn's Disease nights
July 9, 2015 9:38 PM
Newly diagnosed with Crohn's. Many questions below. *with graphic details so don't read if you don't like poop*
I was diagnosed with Crohn's in the terminal ileum after a colonoscopy/EGD two weeks ago. My doctor immediately started me on metronidazole, cipro, and asacol. I see him again next week, and I know I can call him, but I'm looking for reassurance from people who have been there, done that. (Background: mid-20s female, finally scoped/diagnosed after many years of intestinal woes because blood work showed anemia that couldn't be explained.)
1. Is it normal for these meds to be making me sicker? Unusually enough, diarrhea is actually not a major Crohn's symptom for me normally. Since starting the meds 10 days ago, I have had anywhere from 6-15 loose (but not watery) bowel movements a day, most of which come with significant pain and/or cramping. My appetite has also been very poor most days, and I get full pretty quickly.
2. What is the threshold to receive an iron infusion? The first time I saw my GI, 2 months ago, my hemoglobin was 11.8, hematocrit 34, and ferritin 7. I felt crappy then, and based on how crappy I feel now, I'm assuming my levels are lower. Between that appointment and my scope, I tried two different pill version of iron which tore up my stomach. After the scope, I tried liquid iron but a) it is horrendously disgusting, and b) it significantly worsened the diarrhea. So I've stopped taking it for now because I am already taking 9 other pills a day and can't handle another 3x day medication. Or the mouth-full-of-pennies aftertaste all.day.long. I really want to feel better, but not sure if I can just straight up ask for an infusion.
3. Speaking of feeling crappy... is there any way to sort out what is the Crohn's, what's the anemia, and what is the meds? The last week has been pretty terrible... I have extremely low energy, frequent headaches, lightheadedness, and just major apathy. I've been able to be semi-productive some days, but 20 mins of house cleaning this morning left me on the couch the rest of the morning and into the afternoon.
4. Should I expect any other major tests or imaging? So far I've just had the EGD/colonoscopy and some more blood work (A-SCA and something else). I am a teacher so I'm very anxious about getting everything done and under control before I go back to an extremely grueling full-time schedule in 3.5 weeks.
5. And speaking of teaching... should I tell my principal/boss about my diagnosis? I have no idea what the next few months could look like. I know that I could just continue asacol and be fine, or I could end up on steroids, or worse. My classroom is EXTREMELY far from an adult bathroom, and using the student bathroom is not an option. I am very worried about going back to work. The spring was a struggle, dealing with a lot of pain, urgent bathroom needs, and general fatigue/crappiness but I never said anything because I didn't know what was going on. But I also don't want to be that TMI employee that seems whiny or making excuses.
TL;DR - tell me everything about your initial experience with Crohn's, particularly the meds listed above. Any teachers with Crohn's? How do you survive?
I was diagnosed with Crohn's in the terminal ileum after a colonoscopy/EGD two weeks ago. My doctor immediately started me on metronidazole, cipro, and asacol. I see him again next week, and I know I can call him, but I'm looking for reassurance from people who have been there, done that. (Background: mid-20s female, finally scoped/diagnosed after many years of intestinal woes because blood work showed anemia that couldn't be explained.)
1. Is it normal for these meds to be making me sicker? Unusually enough, diarrhea is actually not a major Crohn's symptom for me normally. Since starting the meds 10 days ago, I have had anywhere from 6-15 loose (but not watery) bowel movements a day, most of which come with significant pain and/or cramping. My appetite has also been very poor most days, and I get full pretty quickly.
2. What is the threshold to receive an iron infusion? The first time I saw my GI, 2 months ago, my hemoglobin was 11.8, hematocrit 34, and ferritin 7. I felt crappy then, and based on how crappy I feel now, I'm assuming my levels are lower. Between that appointment and my scope, I tried two different pill version of iron which tore up my stomach. After the scope, I tried liquid iron but a) it is horrendously disgusting, and b) it significantly worsened the diarrhea. So I've stopped taking it for now because I am already taking 9 other pills a day and can't handle another 3x day medication. Or the mouth-full-of-pennies aftertaste all.day.long. I really want to feel better, but not sure if I can just straight up ask for an infusion.
3. Speaking of feeling crappy... is there any way to sort out what is the Crohn's, what's the anemia, and what is the meds? The last week has been pretty terrible... I have extremely low energy, frequent headaches, lightheadedness, and just major apathy. I've been able to be semi-productive some days, but 20 mins of house cleaning this morning left me on the couch the rest of the morning and into the afternoon.
4. Should I expect any other major tests or imaging? So far I've just had the EGD/colonoscopy and some more blood work (A-SCA and something else). I am a teacher so I'm very anxious about getting everything done and under control before I go back to an extremely grueling full-time schedule in 3.5 weeks.
5. And speaking of teaching... should I tell my principal/boss about my diagnosis? I have no idea what the next few months could look like. I know that I could just continue asacol and be fine, or I could end up on steroids, or worse. My classroom is EXTREMELY far from an adult bathroom, and using the student bathroom is not an option. I am very worried about going back to work. The spring was a struggle, dealing with a lot of pain, urgent bathroom needs, and general fatigue/crappiness but I never said anything because I didn't know what was going on. But I also don't want to be that TMI employee that seems whiny or making excuses.
TL;DR - tell me everything about your initial experience with Crohn's, particularly the meds listed above. Any teachers with Crohn's? How do you survive?
I'm on a mobile device so I can't respond in full just now but I encourage you to check out the forums at healingwell.com. I have the sister disease, ulcerative colitis, and have found it very helpful
posted by janey47 at 10:06 PM on July 9, 2015
posted by janey47 at 10:06 PM on July 9, 2015
My classroom is EXTREMELY far from an adult bathroom, and using the student bathroom is not an option. I am very worried about going back to work.
Tell you boss now then. They will need to move you classroom. Doing so is a reasonable accommodation under the ADA.
posted by DarlingBri at 10:22 PM on July 9, 2015
Tell you boss now then. They will need to move you classroom. Doing so is a reasonable accommodation under the ADA.
posted by DarlingBri at 10:22 PM on July 9, 2015
I don't have crohns but I did have bad anemia caused by gastric erosions that they discovered when diagosing me with automimmune arthritis. My gastroenterologist was the one who suggested I have an infusion. It was the best thing ever! I loathe iron tablets and that iron-y water is so gross.
Please ask for an infusion! If they say no, ask for reasons and then ask again (I don't know if there are risks, I'm not a doctor, but it didn't seem a big deal at all to me. They gave it to me after I woke from my second endoscopy). I will love my gastro for ever and ever for suggesting I have one. A week or two after I had it I was doing some chores and it struck me that I had done a few hours of work and didn't feel like I had to lie down and die. (I just re-read your post and the bit about 20 minutes of housecleaning wiping you out. That was me! )
posted by kitten magic at 11:17 PM on July 9, 2015
Please ask for an infusion! If they say no, ask for reasons and then ask again (I don't know if there are risks, I'm not a doctor, but it didn't seem a big deal at all to me. They gave it to me after I woke from my second endoscopy). I will love my gastro for ever and ever for suggesting I have one. A week or two after I had it I was doing some chores and it struck me that I had done a few hours of work and didn't feel like I had to lie down and die. (I just re-read your post and the bit about 20 minutes of housecleaning wiping you out. That was me! )
posted by kitten magic at 11:17 PM on July 9, 2015
Oh, God, yes, just ask for the infusion. I had to have them twice during pregnancy/immediate post partum due to severe anaemia (my ferritin was 8, so comparable to yours) and they were amazing. AMAZING. Just ask!
posted by olinerd at 12:22 AM on July 10, 2015
posted by olinerd at 12:22 AM on July 10, 2015
1. Is it normal for these meds to be making me sicker?
I have a different condition that was diagnosed late. My experience is that is is normal for there to be fallout from finally getting treatment. It is a little bit like if you were a drug addict and finally quit. You would go through withdrawal before you would actually feel better. Your body has been wonky for a while and not getting the care it needed and now that you are getting care, it has to take out the garbage first before you feel better.
I no longer take medication. I had lots of diarrhea from doing non-drug treatments while my condition improved. Antibiotics can cause diarrhea, but I think anything that will help your body start doing repair work will cause some initial fallout. Yes, take probiotics and seek other forms of nutritional support for your gut issues, but I think you can expect some initial fallout from finally getting treatment before you will start feeling better.
Think of it like remodeling a house. It usually starts by setting a dumpster on the property and filling it with the stuff that must go. And this is a house you must live in and somehow keep basic services going, so it is messy and inconvenient for a while before you start seeing results that make you feel it is worth it.
is there any way to sort out what is the Crohn's, what's the anemia, and what is the meds?
Start a journal. Join an online support group. Start looking info up online. Over time, yes, you can get good at pinning down what is causing a specific issue so that you can better manage your condition.
posted by Michele in California at 3:18 AM on July 10, 2015
I have a different condition that was diagnosed late. My experience is that is is normal for there to be fallout from finally getting treatment. It is a little bit like if you were a drug addict and finally quit. You would go through withdrawal before you would actually feel better. Your body has been wonky for a while and not getting the care it needed and now that you are getting care, it has to take out the garbage first before you feel better.
I no longer take medication. I had lots of diarrhea from doing non-drug treatments while my condition improved. Antibiotics can cause diarrhea, but I think anything that will help your body start doing repair work will cause some initial fallout. Yes, take probiotics and seek other forms of nutritional support for your gut issues, but I think you can expect some initial fallout from finally getting treatment before you will start feeling better.
Think of it like remodeling a house. It usually starts by setting a dumpster on the property and filling it with the stuff that must go. And this is a house you must live in and somehow keep basic services going, so it is messy and inconvenient for a while before you start seeing results that make you feel it is worth it.
is there any way to sort out what is the Crohn's, what's the anemia, and what is the meds?
Start a journal. Join an online support group. Start looking info up online. Over time, yes, you can get good at pinning down what is causing a specific issue so that you can better manage your condition.
posted by Michele in California at 3:18 AM on July 10, 2015
Welcome to the club, sorry you had to join us.
Regarding the iron infusion, that's at the discretion of your doctor. I've had many of them and while I suffered no ill effects, I never really felt better afterward because my IBD was still active. In that sense your doctor is probably focused on treating your Crohn's first and hoping an iron infusion won't be necessary. You absolutely can ask your doctor for an infusion. He's an adult and a professional and if he doesn't think it's the right thing to do, he will say no. No harm, no foul.
Regarding the meds, Flagyl is notorious for causing digestive distress, fatigue, and a general feeling of awfulness. Have you communicated to your doctor that you're experiencing this? Diarrhea 6+ times per day is considered severe so this is not something you should suffer in silence.
If this is your first diagnosis, you might need to adjust your yardstick for what is "polite" and what is "annoying" and what constitutes an appropriate level of communication between a patient and a doctor. Crohn's, especially newly diagnosed Crohn's, can require a lot of micromanagement of treatment. Waiting until an appointment, even if it's only two weeks later, to raise concerns about a severe side effect is just not going to cut it for you for now. You might need to be pushy to get your doctor on the phone. You deserve to have your concerns heard. You are not a nuisance.
If your doctor doesn't return your calls or there's no way to communicate with him in between appointments, consider finding a different doctor. My super old school hard ass GP says that the first thing you should ask a new specialist is "If I call you, will you return my call within 48 hours?". It's not rude. It's demanding a standard of care that is appropriate and necessary.
Untreated inflammation wears down your body and begets more inflammation. Think of it like a run in your stocking. You might say, "Oh, that run doesn't look so bad, I'll just leave it," and go about your day. But as you continue to ignore it, the run gets longer and longer.
I do recommend sharing your diagnosis with your supervisor. Most people have some familiarity with Crohn's disease and putting a name to your health problems will help show your principal that you're not malingering. I wouldn't put too much doom and gloom into it, but it is definitely better to ask for accommodations before they become urgently needed. IBD is considered a disability for coverage under the ADA.
posted by telegraph at 6:34 AM on July 10, 2015
Regarding the iron infusion, that's at the discretion of your doctor. I've had many of them and while I suffered no ill effects, I never really felt better afterward because my IBD was still active. In that sense your doctor is probably focused on treating your Crohn's first and hoping an iron infusion won't be necessary. You absolutely can ask your doctor for an infusion. He's an adult and a professional and if he doesn't think it's the right thing to do, he will say no. No harm, no foul.
Regarding the meds, Flagyl is notorious for causing digestive distress, fatigue, and a general feeling of awfulness. Have you communicated to your doctor that you're experiencing this? Diarrhea 6+ times per day is considered severe so this is not something you should suffer in silence.
If this is your first diagnosis, you might need to adjust your yardstick for what is "polite" and what is "annoying" and what constitutes an appropriate level of communication between a patient and a doctor. Crohn's, especially newly diagnosed Crohn's, can require a lot of micromanagement of treatment. Waiting until an appointment, even if it's only two weeks later, to raise concerns about a severe side effect is just not going to cut it for you for now. You might need to be pushy to get your doctor on the phone. You deserve to have your concerns heard. You are not a nuisance.
If your doctor doesn't return your calls or there's no way to communicate with him in between appointments, consider finding a different doctor. My super old school hard ass GP says that the first thing you should ask a new specialist is "If I call you, will you return my call within 48 hours?". It's not rude. It's demanding a standard of care that is appropriate and necessary.
Untreated inflammation wears down your body and begets more inflammation. Think of it like a run in your stocking. You might say, "Oh, that run doesn't look so bad, I'll just leave it," and go about your day. But as you continue to ignore it, the run gets longer and longer.
I do recommend sharing your diagnosis with your supervisor. Most people have some familiarity with Crohn's disease and putting a name to your health problems will help show your principal that you're not malingering. I wouldn't put too much doom and gloom into it, but it is definitely better to ask for accommodations before they become urgently needed. IBD is considered a disability for coverage under the ADA.
posted by telegraph at 6:34 AM on July 10, 2015
Regarding iron supplements: a very close friend of mine has had moderate-to-severe Crohn's for about 10 years, including anemia. She has found Nature's Plus chewable iron to be by-far the least-bad iron supplement, and she's tried quite a few. I've tried them myself, and the taste is almost pleasant, which is saying something for an iron supplement.
I am not a doctor, but my understanding is that a hemoglobin level of less than 10g/dL (or 100g/L) is a common cutoff for deciding to use intravenous supplementation in patients with inflammatory bowel disease. (source). You're still a little above that line, but patient preference and the failure of oral supplementation are also factors. If oral supplementation is intolerable, then it has already failed. Talk to your doctor about an infusion. A better oral supplement may be something to try as a maintenance therapy after the anemia is treated.
Should I expect any other major tests or imaging?
If you had any strictures or obstructions then there might be a CT or MRI. You can probably expect routine blood work every few months, but your doctor should have already talked to you about that.
posted by jedicus at 6:42 AM on July 10, 2015
I am not a doctor, but my understanding is that a hemoglobin level of less than 10g/dL (or 100g/L) is a common cutoff for deciding to use intravenous supplementation in patients with inflammatory bowel disease. (source). You're still a little above that line, but patient preference and the failure of oral supplementation are also factors. If oral supplementation is intolerable, then it has already failed. Talk to your doctor about an infusion. A better oral supplement may be something to try as a maintenance therapy after the anemia is treated.
Should I expect any other major tests or imaging?
If you had any strictures or obstructions then there might be a CT or MRI. You can probably expect routine blood work every few months, but your doctor should have already talked to you about that.
posted by jedicus at 6:42 AM on July 10, 2015
Regarding work, please tell your supervisor what's up so you can switch your classroom. If you're close to a teacher who is currently occupying a suitable space, perhaps you could get him/her to agree in advance, which might speed up the process since there's less than a month left.
Telling your boss now, while your Crohn's is managed fairly invisibly, is also important so nothing happens by surprise if you find you need further accommodation in the future, even if it's just time off for medical stuff. As a cautionary tale, an office manager where I once worked waited too long before telling us about her Crohn's Disease diagnosis and needs, which she'd been keeping on the down low. Some of the partners had already formed erroneous conclusions about her work ethic, devotion, etc. (e.g., "She's gone so much! Is she looking for another job?") which was unfortunate because it cut into the store of goodwill she could call upon later. As a result, she received grumbling accommodation instead of sympathetic accommodation and it wasn't fair.
posted by carmicha at 7:37 AM on July 10, 2015
Telling your boss now, while your Crohn's is managed fairly invisibly, is also important so nothing happens by surprise if you find you need further accommodation in the future, even if it's just time off for medical stuff. As a cautionary tale, an office manager where I once worked waited too long before telling us about her Crohn's Disease diagnosis and needs, which she'd been keeping on the down low. Some of the partners had already formed erroneous conclusions about her work ethic, devotion, etc. (e.g., "She's gone so much! Is she looking for another job?") which was unfortunate because it cut into the store of goodwill she could call upon later. As a result, she received grumbling accommodation instead of sympathetic accommodation and it wasn't fair.
posted by carmicha at 7:37 AM on July 10, 2015
I've been living with CD for the past 45 years. I've had 2 partial resections at the terminal ileum, once in 1978 and again in 1998. I currently take a drug called Lialda, which is a formulation of generic Mesalamine that seems to do a relatively good job of managing the inflammation. I recently had a capsule endoscopy (where you swallow a camera that takes pictures thru the length of your intestine) that shows there has been some periodic inflammation at several areas along my gut from the duodenum to the colon. At the moment, there doesn't seem to be any large areas of particularly active disease. I mention all this to basically establish my bona fides.
I've also run a support web forum since 1987 (and it really looks that old, too) for folks with various IBDs, called IBD Sucks. We are not doctors or medical professionals, per se, just ordinary folk who help each other out, living day to day with this shit. You are welcome to join us, ask anything you want, whine and kvetch, or just hang out. I have to say that things are a lot less active than when we first started years ago, a lot of people use the newer social media now.
You don't mention in your initial post whether the doc you're seeing is a GI specialist or not If he's not, you really want to find someone who is. They will be much more up-to-date on current treatments than a GP.
Depending on the severity of your CD there are quite a few medications that can help keep it at bay. Some are more serious than others. Some that you've maybe seen ads for on the TV are what are called biologicals, meaning that they are (for the most part) monoclonal antibodies, that attempt to directly modify your body's own immune response. In the right situation, these can be very effective. The problem is, over time they lose effectiveness and you have to move on to the next one. So it's unusual to start off with one of these.
I'm a bit surprised that you haven't been prescribed Prednisone, what I call "the drug we hate to love". It has something of a bad rep, because of a raft of side-effects that can be annoying, but it is also vert effective in treating acute inflammation. It's usually the first salvo fired when someone is newly diagnosed.
By all means tell your supervisor about this. There is no reason to be ashamed of it, and in fact there are legal reasons why you want to let them know up front, mainly to do with protection from being fired or demoted because of disability.
There's lots more to tell you but this is already getting overlong. Send me a private message if you'd like more private answers.
posted by qurlyjoe at 8:43 AM on July 10, 2015
I've also run a support web forum since 1987 (and it really looks that old, too) for folks with various IBDs, called IBD Sucks. We are not doctors or medical professionals, per se, just ordinary folk who help each other out, living day to day with this shit. You are welcome to join us, ask anything you want, whine and kvetch, or just hang out. I have to say that things are a lot less active than when we first started years ago, a lot of people use the newer social media now.
You don't mention in your initial post whether the doc you're seeing is a GI specialist or not If he's not, you really want to find someone who is. They will be much more up-to-date on current treatments than a GP.
Depending on the severity of your CD there are quite a few medications that can help keep it at bay. Some are more serious than others. Some that you've maybe seen ads for on the TV are what are called biologicals, meaning that they are (for the most part) monoclonal antibodies, that attempt to directly modify your body's own immune response. In the right situation, these can be very effective. The problem is, over time they lose effectiveness and you have to move on to the next one. So it's unusual to start off with one of these.
I'm a bit surprised that you haven't been prescribed Prednisone, what I call "the drug we hate to love". It has something of a bad rep, because of a raft of side-effects that can be annoying, but it is also vert effective in treating acute inflammation. It's usually the first salvo fired when someone is newly diagnosed.
By all means tell your supervisor about this. There is no reason to be ashamed of it, and in fact there are legal reasons why you want to let them know up front, mainly to do with protection from being fired or demoted because of disability.
There's lots more to tell you but this is already getting overlong. Send me a private message if you'd like more private answers.
posted by qurlyjoe at 8:43 AM on July 10, 2015
35, male, diagnosed 1991.
1. Everyone's reactions are different, but yes. Read the product inserts for the drugs you're taking--they'll go through all the adverse effects observed in clinical trials and in the people who've taken them since they've been on the market (these are mandated by FDA for this purpose and generally online, too, so you can just search for "_______ product insert"; example for Flagyl). Generally speaking, drugs are not benign, inert substances. Nor are they specifically targeting a single part of our physiology. They have wide impacts beyond just the signs and symptoms they're prescribed to influence, they do weird things everywhere in the body. In a more deep science way, what we call Crohn's may actually be several different disorders that present in a similar way, and drugs probably respond differently depending on which quirky variety we have.
2. Varies. You should feel comfortable asking your doc about it, though, and getting their take.
3. Nope, but you might be able to get a better handle on what triggers certain things over time. I had the good fortune of meeting with a very, very good gastroenterologist who was also (perhaps predominantly) a registered dietician. She worked wonders with me: I started keeping a food diary and tracking what/where/when I experienced flare ups. I was able to get a very good handle on the triggers that I could easily control--mostly animal fats, but also fats/oils generally--and accommodate them--I went vegetarian in 1993 and vegan in 1998, virtually eliminating the sudden food-triggered flare ups that sent me to the hospital in the first place. This also helped me move away from routine medicating. I don't take anything for maintenance, and only take meds (usually a short regimen of prednisone) when a flare up threatens. I've been incredibly lucky, but I also credit this excellent doctor and her skill in teaching me how to observe my condition with an eye to preventing when possible but attacking when necessary. My main goals as a teen were getting off as many meds as possible, because I hate all of them.
4. Not unless your docs suggest them and make you feel confident that they're justified. Don't be afraid to ask your doc probing questions, especially about procedures and meds, and whether they're necessary or just helpful.
5. Yes. I haven't taken a job in my life where I didn't tell them that I have Crohn's. Many employers are familiar with it already, but it needs to be made clear just as a part of due diligence. You can consult resources like this and this for more information on this topic.
You should also check out the subreddit for Crohn's and UC folks. It's a handy and large support group, and there's always lots of q&a that people find useful.
I'm glad you finally have a diagnosis--I wish you much patience while you get it under control!
posted by late afternoon dreaming hotel at 9:26 AM on July 10, 2015
1. Everyone's reactions are different, but yes. Read the product inserts for the drugs you're taking--they'll go through all the adverse effects observed in clinical trials and in the people who've taken them since they've been on the market (these are mandated by FDA for this purpose and generally online, too, so you can just search for "_______ product insert"; example for Flagyl). Generally speaking, drugs are not benign, inert substances. Nor are they specifically targeting a single part of our physiology. They have wide impacts beyond just the signs and symptoms they're prescribed to influence, they do weird things everywhere in the body. In a more deep science way, what we call Crohn's may actually be several different disorders that present in a similar way, and drugs probably respond differently depending on which quirky variety we have.
2. Varies. You should feel comfortable asking your doc about it, though, and getting their take.
3. Nope, but you might be able to get a better handle on what triggers certain things over time. I had the good fortune of meeting with a very, very good gastroenterologist who was also (perhaps predominantly) a registered dietician. She worked wonders with me: I started keeping a food diary and tracking what/where/when I experienced flare ups. I was able to get a very good handle on the triggers that I could easily control--mostly animal fats, but also fats/oils generally--and accommodate them--I went vegetarian in 1993 and vegan in 1998, virtually eliminating the sudden food-triggered flare ups that sent me to the hospital in the first place. This also helped me move away from routine medicating. I don't take anything for maintenance, and only take meds (usually a short regimen of prednisone) when a flare up threatens. I've been incredibly lucky, but I also credit this excellent doctor and her skill in teaching me how to observe my condition with an eye to preventing when possible but attacking when necessary. My main goals as a teen were getting off as many meds as possible, because I hate all of them.
4. Not unless your docs suggest them and make you feel confident that they're justified. Don't be afraid to ask your doc probing questions, especially about procedures and meds, and whether they're necessary or just helpful.
5. Yes. I haven't taken a job in my life where I didn't tell them that I have Crohn's. Many employers are familiar with it already, but it needs to be made clear just as a part of due diligence. You can consult resources like this and this for more information on this topic.
You should also check out the subreddit for Crohn's and UC folks. It's a handy and large support group, and there's always lots of q&a that people find useful.
I'm glad you finally have a diagnosis--I wish you much patience while you get it under control!
posted by late afternoon dreaming hotel at 9:26 AM on July 10, 2015
Thanks for reassurance so far.
I am seeing a GI, and called his office after asking this question, although I haven't heard from him yet... grr. Maybe I need to start thinking about seeing someone else.
Thanks for the advice re: telling boss too. Not sure how realistic it is to have classroom moved (really, it's an old building with exactly one (ONE... 1!!!!) adult restroom inconveniently located to basically all the classrooms), but it is probably good for admin to know about at least.
If any other CD people are reading, I'd still love to hear your experiences - it's a lonely feeling!
posted by raspberrE at 4:13 PM on July 10, 2015
I am seeing a GI, and called his office after asking this question, although I haven't heard from him yet... grr. Maybe I need to start thinking about seeing someone else.
Thanks for the advice re: telling boss too. Not sure how realistic it is to have classroom moved (really, it's an old building with exactly one (ONE... 1!!!!) adult restroom inconveniently located to basically all the classrooms), but it is probably good for admin to know about at least.
If any other CD people are reading, I'd still love to hear your experiences - it's a lonely feeling!
posted by raspberrE at 4:13 PM on July 10, 2015
My gastroenterologist and I have an ongoing friendly discussion as to whether I have Crohn's colitis (his diagnosis) or ulcerative colitis (my diagnosis, based on the fact that my mother had it, and on where it first presented in the colon). But as he told me just last week, the treatment is similar. I was diagnosed 12 years ago and have yearly colonoscopies to monitor it and adjust medication accordingly, and remove any polyps that are found so as to hopefully avoid colon cancer.
1. You should let your gastroenterologist know about stool frequency and cramping. This needs to be promptly addressed. The right gastroenterologist is going to work extremely hard to get the inflammation under control. I had the tiniest of flares a few weeks ago and debated about not even calling my GI. Nope. He had me in the office right away.
2. My current meds are Lialda and 6-MP. I have blood panels done regularly to monitor liver function, anemia, etc. At my doctor's direction I also take Vit. B-12 and Vit. D. Up until my tiny flare, I have been asymptomatic for several years (verified by a colonoscopy a year ago that showed no inflammation, after years of ones that showed various degrees of patchy inflammation).
3. Find the best GI you can. Travel if you need to. If you share your location, someone here may have a recommendation.
4. While prednisone is one of the medicines my GI has in his arsenal, he has not suggested it for me. We've discussed it, and he prefers other treatments. I've known others with Crohn's/UC who *have* taken it and the side effects do need to be taken into account.
5. I would definitely tell your employer about the need for accommodation. (Says someone who, before my colitis was under control, had to SPRINT to the bathroom--frequently.)
I've used both the Healing Well and IBD Sucks boards--not posting, but reading about others' situations. Everyone is different and every diagnosis is different. It's helpful to know that you are part of a community.
posted by apartment dweller at 11:54 PM on July 10, 2015
1. You should let your gastroenterologist know about stool frequency and cramping. This needs to be promptly addressed. The right gastroenterologist is going to work extremely hard to get the inflammation under control. I had the tiniest of flares a few weeks ago and debated about not even calling my GI. Nope. He had me in the office right away.
2. My current meds are Lialda and 6-MP. I have blood panels done regularly to monitor liver function, anemia, etc. At my doctor's direction I also take Vit. B-12 and Vit. D. Up until my tiny flare, I have been asymptomatic for several years (verified by a colonoscopy a year ago that showed no inflammation, after years of ones that showed various degrees of patchy inflammation).
3. Find the best GI you can. Travel if you need to. If you share your location, someone here may have a recommendation.
4. While prednisone is one of the medicines my GI has in his arsenal, he has not suggested it for me. We've discussed it, and he prefers other treatments. I've known others with Crohn's/UC who *have* taken it and the side effects do need to be taken into account.
5. I would definitely tell your employer about the need for accommodation. (Says someone who, before my colitis was under control, had to SPRINT to the bathroom--frequently.)
I've used both the Healing Well and IBD Sucks boards--not posting, but reading about others' situations. Everyone is different and every diagnosis is different. It's helpful to know that you are part of a community.
posted by apartment dweller at 11:54 PM on July 10, 2015
Not sure how realistic it is to have classroom moved (really, it's an old building with exactly one (ONE... 1!!!!) adult restroom inconveniently located to basically all the classrooms)
They need to make "reasonable accommodations." That would be the classroom nearest the bathroom. Or alternatively, dispensation to use the student bathroom I guess. But you need to be accommodated.
posted by DarlingBri at 4:09 AM on July 11, 2015
They need to make "reasonable accommodations." That would be the classroom nearest the bathroom. Or alternatively, dispensation to use the student bathroom I guess. But you need to be accommodated.
posted by DarlingBri at 4:09 AM on July 11, 2015
Yeah, Chrons is rough, Cipro is rough. I'll join the chorus of I wonder why they didn't put you on a prednisone taper. It's a hard drug too but it worked for me to get it all under control in the beginning. I remember the asacol made me immediately vomit (I remember this from 2008.) It's going to be okay. I haven't had a flare in 5+years at this point and I'm not sure what to credit it to other than avoiding lots of processed foods.
Things that help me: electrolyte water, This shake was the only thing my stomach could tolerate in a flare, keep a food journal, less drinking, no nitrates, and I take floradix iron yes it it gross but it helps.
You are welcome to PM me. Good luck
posted by ibakecake at 7:25 PM on July 11, 2015
Things that help me: electrolyte water, This shake was the only thing my stomach could tolerate in a flare, keep a food journal, less drinking, no nitrates, and I take floradix iron yes it it gross but it helps.
You are welcome to PM me. Good luck
posted by ibakecake at 7:25 PM on July 11, 2015
An update in case any other newly diagnosed Crohnies read this...
I did end up on prednisone at the end of August after I lost 10 more pounds between mid July and end of August and another colonoscopy showed major inflammation. I also had a CT enterography that showed bowel wall thickening. I started Humira in October and weaned off prednisone by December. Currently doing ok, but not great, on just Humira (with Levsin as needed for cramping).
posted by raspberrE at 5:40 PM on January 21, 2016
I did end up on prednisone at the end of August after I lost 10 more pounds between mid July and end of August and another colonoscopy showed major inflammation. I also had a CT enterography that showed bowel wall thickening. I started Humira in October and weaned off prednisone by December. Currently doing ok, but not great, on just Humira (with Levsin as needed for cramping).
posted by raspberrE at 5:40 PM on January 21, 2016
This thread is closed to new comments.
posted by fifthrider at 9:50 PM on July 9, 2015