IBD Intro Thread.

[Deleted]

Hello! Welcome to the IBD Support Group!
This is the space for you to share about yourself and your background. Obviously, feel free to share as much or as little as you feel comfortable. I'm looking forward to getting to know all of you!

[hannamaren]

Well, I will start with a brief medical history

Diagnosed at age 14. No symptoms after initial flare so we stopped all medication
Liver transplant in 2004 which triggered a flare. Very bad - couldnt work, no control, you know the drill.
After 6 months of trial and error - started Remicade which was amazing for 2.5 yrs. then stopped working
Switched to Humira which has been great - 40mg weekly injections. No other meds or flares.

[Deleted]

Here I go:

I had my first flair up when I was 14. I am now 25, and I still do not have a definitive diagnosis. Constant symptoms from top to bottom of my GI tract, and the doctors don't know what to do with me anymore. I've had multiple endoscopies, ultrasounds, blood tests, etc. I've never been tested for Chrohn's or any lower GI disorders because my chief symptom has always been nausea, but my current flair up is making me realize that it's just easy to ignore lower GI issues when you feel like throwing up all the time because it feels more urgent than everything else. My last PCP left their clinic, and none of the other doctors were willing to take me on as a patient because I'm too "complex." I finally have my first appointment with an Internal Medicine specialist next week.

My last PCP most recently "diagnosed" me with IBS, but never provided any real reason for the diagnosis, treatment options, or medications to try and control the symptoms. He just said that if it isn't anything else, it must be that. I have Hashimoto's so I'm on thyroid medication, but nothing for my GI symptoms other than OTC. I have struggled with depression my entire life, but did not start developing anxiety and OCD until a few years after my symptoms started.

[hannamaren]

Pixie, that js rough. I am glad you are finally seeing a specialist!

[Deleted]

Feb 25, 2013 10:17:26 GMT -5 hannamaren said:

Pixie, that js rough. I am glad you are finally seeing a specialist!

Its definitely been a frustrating adventure. I'm really curious to hear what other people have found successful as far as treatment and medications.

[racheliz]

My turn:
My story is a little on the long side, sorry! 
I first started having problems in college, got scoped by my GP and he told me I had ulcers in my colon and gave me a steroid and all was well ( never officially diagnosed me with a chronic condition) Flash forward 6 years and started having same problems, except I ignored them this time and told myself it was stress and that when I switched jobs it would go away. Yeah, right! I let this episode get REALLY bad and also ended up pregnant. My OB didn't take my problems serious at first until I basically told her I was going to the bathroom 15 times a day and pretty much demanded a referral. Because I was pregnant, we had to treat conservatively. Started with oral steroids, tried two rounds with no improvement. I got scoped again at 20 weeks so my GI could see how serious it was, it was severe ulcerative colitis and went up 18 inches. We then tried steroid enemas because it was safest for baby. Basically when I hit my third trimester my GI dr put me on a tapered dose of Lialda and said if it didn't work, I was going in the hospital on total bowel rest and peripheral nurtrition. He also basically said the only reason I wasn't admitted yet was because I am a nurse and kept good records of symptoms and did my lab work in time. Luckily the Lialda worked and I was able to wean off by the time I delivered so I could breast feed. 11 months later and still symptom and med free. I am about to stop nursing DD and I really hope they stay away once my hormones settle down again!

[midnightrae]

I am on my phone, so I will have to come back later and finish my intro. I have always had stomach issues and have had a dairy allergy since I was little, I just didn't know it was an allergy at the time . I also can't eat eggs, honey, and gluten. I had a colonoscopy when I was 21/22, but they could not finish it. I do have some growths and skin tags in my colon and need to have them removed by surgery. I am also supposed to have another test done since they were not able to see in the right side during my colonoscopy. I was also diagnosed with IBS and that is pretty much all they know right now. If you have any questions, feel free to ask.

Sent from my ADR6330VW using proboards

[caramia]

I was super healthy until my sophomore year of college, then I started having stomach pains/cramps & diarrhea. I put off visiting the doctor until it started interfering with classes. After lots of blood tests and taking antibiotics I had a colonoscopy when I was 21 in 2009.  My GI diagnosed me with severe Crohn's in my ileum (small intestine) & started me on steroids (entecort, I refused prednisone). That didn't help, so I started Humira 3 months after diagnosis.



I've been on Humira for over 3 years now, with minimal side effects. I'm not even close to "normal," but it's better than it could be. Unfortunate, Humira injections really hurt (for me at least), so I'm planning to change meds soon. We're also planning to TTC in the next 6 months, so I'm not sure what drug to choose (remicade is the forerunner).



I've found that a mostly paleo diet helps a lot, as does deep breathing to relax. Stress definitely makes everything worse for me. If I'm careful, I can have good weeks, but it's exhausting. I want to sleep 10hours a day, everyday, no matter what. My H has really been my biggest asset- he's always been so supportive & understanding. He gets it when I don't want to leave the house, even though I'm not in danger of shitting myself.... Some days you just want to stay home.

[carifly]

My whole life I struggled with symptoms of IBS (diarrhea, cramps, etc on a frequent basis) but I pretty much just dealt with it assuming it was normal.

When I was a senior in HS I started getting nightly attacks with severe, crippling pain in my abdomen, vomiting, and diarrhea. They'd usually last a couple hours, and I would generally break out in hives prior to the attack starting. Enter the medical mystery- my pediatrician referred me to a GI at Children's Hospital and over the course of three months I had just about every test he could think of- lactose intolerance, barium, colonoscopy, endoscopy, bloodwork, etc. Eventually he diagnosed me with Crohn's, although I've never felt that he was completely confident in the diagnosis as the hives were never explained and there was never any "ah-ha" moment where it was clear I had something specific wrong.

Anyhow, he put me on Prednisone and Flagil short term while we worked through finding medication to help. I also kept a food diary and eventually eliminated most raw vegetables. I was on Dipentum in a relatively high dose and it eliminated almost all of my symptoms. After four years on it i weaned off it and haven't been on medication since.

I've had periods since where I've had small flare-ups, sometimes with blood in the stool, and get regular colonoscopies but I basically consider myself healthy and in remission now. Although my digestive system is still far from normal, it's livable and I'm very grateful that I haven't had a prolonged flare up in so long.

[mrssavy42112]

Hi! I haven't been diagnosed with a GI disease, but I have struggled with symptoms for years now. When I was strictly vegan, everything was great. Now that I've gotten loser & am having some dairy, it's all over the place. My acid reflux is worse and my stomach issues are increasingly more common. I also suffer from hemorrhoids that I think have gotten worse.

So, I'm hoping to change my diet and regain control of my symptoms.

[aimeedyan]

I have Crohns disease, mostly located in my ileum but they removed most of it.

Diagnosed while in graduate school, about 10 years ago now. Started with my inability to heal from a pilonidial cystectomy. My surgeon just kept throwing antibiotics at me. Finally saw a wound care specialist who realized there was something underlying, he ran basic labs that were all messed up, and sent me to a GI.

Initially, they assumed Celiac. Colonoscopy/endoscopy proved otherwise and it was a classic case of Crohn's.

Immediately went on Remicade. Worked for 2.5 years then had severe allergic reaction to it.

Went onto Humira. Worked for 2.5 years before it stopped working.

Finally gave in to my GI's suggestion and had a double bowel resection 3 years ago, which was AWFUL. I wasn't even back at work before the disease was flaring again. So much for remission!

Went on Cimzia, which I've been using since. It's not working great - I've had some partial obstructions recently - but I'm not sure what else is out there. I recently moved and don't have the kind of relationship with my new GI as I did my old one, which really affects things. I loved my old GI

[Deleted]

Yay, a board for people with messed up intestines! lol

I have an abdominal malrotation, a birth defect that has my abdominal organs deformed and misplaced. It causes a host of lovely diseases and conditions that usually end in me sitting on the toilet while simultaneously puking bile into a trash can and then dry heaving for hours on end. I'm nearly always dehydrated and get IV fluids here and there when I can't get it back to normal on my own. I've given up on pretty much all medications and try to manage to the best of my ability.

[Deleted]

papiercherri, how old were you when you were diagnosed? were they able to find it on a regular ultrasound?

[Deleted]

Mar 2, 2013 19:42:33 GMT -5 tacom said:

papiercherri, how old were you when you were diagnosed? were they able to find it on a regular ultrasound?

I was 15, and it should show up on an ultrasound. It even showed up on my ultrasounds when I was pregnant.

Most people are diagnosed before they reach a year old though. It's actually quite common, but it has varying degrees of severity.

[Deleted]

Thanks for sharing. I had never heard of that before.

[sassystace]

Hello fellow IBDers! I was actually quite surprised to notice this board today for the first time. I have Crohn's and wasn't diagnosed until I was 32 yrs old. After I started weaning my daughter (first kid) I had my first flare up. This was in 2008. I assumed I was just stressed or had IBS and just ignored the diarrhea until it got to be like 20 times a day and was pooping blood. At this point I really felt awful and couldn't really function at all. I had a colonoscopy right away at a GI specialist and was diagnosed pretty quickly with Crohn's colitis. My doctor told me it was the worst looking colon he'd seen (thanks!). Anyway, I took steroids for a while and rectal foam steroids too. Then he put me on asacol (10 pills a day) which has worked well so far. Now I am down to just asacol and am doing pretty decent. I've had my second baby (he's three now) since then and took asacol throughout pregnancy and breastfeeding. Anyway, glad to meet you all and if you have questions, let me know!

[sno&2peas]

I just randomly saw this board and thought I'd intro (more of a lurker). I started having stomach issues at 21, at first it was lactose but I was never formally diagnosed. Basically I'd eat something and run to the ladies with sweats within the hour. Also, have issues with beer etc. I am a survivor of non-hodgkin's (nothing in my abdomen) but the tx I went through messed with my digestive system more (severe GERD), I've been on Prilosec 20mg for at least 5 years. Never had a colonoscopy, had my gallbladder out in 2009 for failing (not stones) and was basically told after that I had IBS because I can have a good day or a bad day where my body doesn't like what I am eating and I run to the bathroom... never vomiting unless my heartburn is out of control. I don't think I've had "normal" bowel movements since I was in my early 20's... I know I'm not nearly as severe as some but just thought I'd intro!

[Deleted]

Welcome, new people. :-)

[Deleted]

Mar 11, 2013 12:01:46 GMT -5 sno&2peas said:

I just randomly saw this board and thought I'd intro (more of a lurker). I started having stomach issues at 21, at first it was lactose but I was never formally diagnosed. Basically I'd eat something and run to the ladies with sweats within the hour. Also, have issues with beer etc. I am a survivor of non-hodgkin's (nothing in my abdomen) but the tx I went through messed with my digestive system more (severe GERD), I've been on Prilosec 20mg for at least 5 years. Never had a colonoscopy, had my gallbladder out in 2009 for failing (not stones) and was basically told after that I had IBS because I can have a good day or a bad day where my body doesn't like what I am eating and I run to the bathroom... never vomiting unless my heartburn is out of control. I don't think I've had "normal" bowel movements since I was in my early 20's... I know I'm not nearly as severe as some but just thought I'd intro!

Welcome to the board!

Your sig pictures are adorable. :]

[pugs3602]

Hi everyone! I have not been diagnosed with IBD, but I hope you will still have me. I was diagnosed with lupus a couple years ago. It is an autoimmune disease, like Chron's, and I can relate to a lot of the things posted here. I looked up some of the symptoms of Chron's disease and it is very similar to those of lupus. I have also had some gastrointestinal issues but don't know if it is related to the lupus, the medications I am taking, or something else completely. There is also a theory of autoimmune cascade, meaning that if you have one autoimmune issue, you are likely to have another. Looking forward to chatting with you all, learning more about various conditions, and finding new ways to deal with living with a chronic condition.

[audry80]

Just found this board! So glad to have found you guys.

I had a liver transplant 2 years ago and got a bad case of salmonella poisoning three months after. It severely damaged my bowel and I have suffered every since. It has gotten better but I almost shit myself enough for it to be annoying.

[frontbutt]

Hi all - I have not been given an official diagnosis, but here's sort a rundown of where I'm at:
-2006, Gall Bladder Removed
-2011-2012, Diarrhea and cramping every F'ing day; usually right after eating anything
-Easter 2012, Gluten Free (after which symptoms ease up, but not gone completely)
-January 2013, Colonoscopy, Diverticulitis but no Crohn's, which was my main fear

Anything spicy, liquid, onion-y, fiber-y, or fatty makes me run for the toilet. Sigh.

[Ohhmm(bligo)]

HI. For those of you who don't know me, I don't really have any sort of common decency filter, and you guys might not be offended by talking about my gross poop, so I'm gonna go for it.
I was diagnosed with IBS in high school. I can't remember what all tests they did - a colonoscopy for sure, I think, and other related ones.
I usually can't poop. I only do every few days. Sometimes I get horrid, awful stomach cramps, and am so constipated I can hardly go, but when I can, it's very loose. Other times I have to go so very badly but just can't get it out.
My doctor recently gave me a script for Levsin, which has helped so far. I haven't had any other kind of treatment for it (I was dx at the same time as I was being seen for a thyroid growth which resulted in surgery, and visovagal syncope, so no one's cared so much about my broken colon).

[lmb5109]

Hi All, the wonderful ladies on MM told me about this group! Yea for a place I can talk about my stupid ass stomach!

First flare was in the April of 2003, after 2 weeks of horrible pain I went to the doctor and after all the blood work, I had a colonoscopy. They found 30 ulcers in my large intestine but the doctor in Milwaukee didn't know if it was Crohn's or UC so they stuck me on Prednisone & Asacol Asacol didn't work and had some bad side effects from it. Then I was put on Colazal and it worked wonderful till 2007.

Another flare in April of 2007, another colonoscopy & Prednisone. My new doctor in Chicago added Imuran to my Colazal. Worked great minus loosing hair & weight. Got married in 2009 and went off the Imuran because we wanted to TTC but didn't for over 2 years.

Another flare October of 2011, another round of Prednisone and rectal steroids. I got pregnant in Dec 2011, then miscarried in Jan 2012. Flared the next month but it was a different flare, this was all of my joints (wrists, elbow, knees, ankles) swelling and incredibly stiff. I literally couldn't get out of bed without help. I really needed to get a colonoscopy, but got pregnant and of course started to flare around week 6. So another round of Prednisone but this was a 2.5mg taper each week, so I was on it a long time and had to see a high risk OB but also got a lot of extra ultrasounds to see the baby. AJ was born at 41 weeks and a very healthy 8.4 lbs and all was good till about 3 weeks ago when I started to feel that stomach pain again, no bathroom issues, but I am now seeing a new doctor, one who is on the CCFA board and he has a game plan to work with me and my breast feeding!!

[OrangePixyStix]

I just found this board (although a regular over in Child Free Thoughts) and am glad to know there's a GBCN support for this!  

I was diagnosed with Crohn's disease last year after experiencing horrible issues stemming from a C-dif infection.   They never could tell me how I might have gotten it, but it took 2 rounds of antibiotics to flush it out.   2 colonoscopies, several CT scans, and several meds later... I'm feeling better body-wise but I definitely have the Crohn's and did not know until the bacterial infection wrecked me so badly. 

I'm now on Remicade and have had 4 infusions since December, now on an 8-week schedule.   I'm mostly just happy that my symptoms are controllable, there was a time last year where it was difficult for me to even leave the house not knowing if I would be able to get to a bathroom in time.   I did keep a poop journal for a while (not with pics, though, descriptions were hard enough to deal with, haha). 

Anyhow, I just wanted to introduce myself and hopefully we can all help eachother learn to deal with issues that can seem so embarrassing to talk about.  

[greenscreen]

Hi all! I have Crohn's (mod/severe). I currently take Remicade (been a Godsend), Imuran, Asacol and a multitude of supplements.
I have previously taken many rounds of prednisone to get things under control and did Humira shots for 2 years (stopped working).

I follow a modified version of the Specific Carbohydrate Diet/GAPS (no dairy, refined sugar, grains). I don't know if it helps, but I stick with it. I'm happy to answer any diet questions. I have tried a lot of food/nutrition solutions.

It has been a rough few years, and I have had every orifice scoped. I am hoping to avoid another colonoscopy in June. Really hoping!

[Deleted]

I had no idea this board was here, but I'm so glad I found it. I've had BM issues ever since I can recall. Sometimes the pain in going to the bathroom is ridiculous, and lately there is always blood in my stool. I recently found a good doctor (my one up till now was a joke - PPO) and she gave me a prescription for a liquid laxative (can't remember the name offhand - it's green and slightly thick in consistency). It helped daily for a week or two, but I'm at the point now where I go days without a BM again. I'm really bloated and there is pain. I hate it. However, the benefit now is that I don't have to push as hard, and sometimes I'm lucky enough to have diarrhea.

At the time of her writing me the script, she said I likely have some form of IBS and that I should have a colonoscopy. I hate my insurance (Blue Shield) as they are a complete joke and have charged me out the yazoo for crazy things ($1200 for routine bloodwork just last year, but that's a long story and it wasn't only BS's fault) so I asked if we could wait and see if the script solved the problem. As it clearly didn't, I called her office the other day and got a referral to the gastroenterologist she works with/likes and have an office visit with him this coming Monday.

I'm scared. I've never had a colonoscopy before and I keep going worst case scenario in my head - colon cancer. I'd rather know, of course, but I'm still scared. Most of it is due to a lack of education, so I'm hoping this board can help with this, at least a bit. Thanks for being here.

[OrangePixyStix]

Welcome, joesther! Not knowing what's wrong is more nerve-wrecking for me than going through the colonoscopy process (although I had to do that TWICE last year and admit it's not fun). I truly hope your next doctor is much more helpful and can help you find the causes of your pain.

The way I see it, even if it comes back with the worst case scenario, it's better to know and do something about it than to keep ignoring it and let the "worse case" be what takes my life simply because I didn't want to accept the truth. I've now been diagnosed with an IBD, something that is never cured and is a life-long issue, and while that was heavy news to take in, at least I know why I was so sick and what I can do to get better if I follow my treatment plan.

I'll definitely say I never thought having diarrhea would be considered "lucky" (lol @ how you phrased that), but either going too much or not going enough is definitely reason to have things looked at. You definitely don't want to live this way forever, and we're here to support you if you need it!

[centralperk]

Hi there!

I don't know how I never noticed this board until today. I was on the-site-that-shall-not-be-named for a long time under a different name, mostly on the International board. Now I am more of an occasional poster there and on H&F. I spend most of my board time on TTCAL on TB. I've had 2 losses but they don't think my Crohn's or any of meds have caused them.

My story is long, like everyone's I'm sure, but here's the short version. I was diagnosed with Crohn's Disease in August 2010 after being sick since January 2010. At the time of diagnosis, I had diarrhea, Erythema nodosum, anal fissures, a perianal abscess and fistula, and joint pain and swelling. I started treatment with 6MP and Remicade immediately, and have felt very good since then. I went from feeling terrible and being in a lot of pain to feeling pretty normal within about 10 days after starting Remicade. I still have symptoms, but they are very manageable.

There is another IBD forum that I post on, but I'd love to join you all if you'll have me!

[zelda25]

Is anyone still reading this thread? Figured it was the best place to do an intro.

I'm the only person I know under the age of 60 with diverticulosis with occasional bouts of diverticulitis. If anyone else around here has same, I would love to hear from you, partly to swap symptoms, triggers, frequency, etc., but also because I'd like to not feel like the only weirdo walking around with a senior citizens' problem, LOL.

I had my first infection two and a half years ago and ended up in the hospital at that time because of an abscess. Two CT scans and a colonoscopy later, I'm pretty much just managing day-to-day and get the occasional script from my doctor when I/we feel I have an infection. I can probably count on one hand the number of "good poops" I've had since then--and have fingers left over.

The surgeon and hospitalist who read my first CT scan both pushed for a resection, but my internist and GI doc both thought that was ridiculous without a history of frequent problems. I didn't want the surgery at the time, but I'm starting to question whether or not that was the right call.

Anyway, hi!