Anyone suffering from Chrohns Disease?

[Spidey7]

I have what my doctor says is a mild condition, but I was a little worried that it may be getting worse. But just as I was beginning to experience more and more slight pain in the area, its now completely gone away and I haven't felt any pain in over a week?

I would be interested in hearing any of your stories for sufferers and how your condition has changed, or not changed and what you've had to go through.

I am currently on Pentasa. Is this what you take as well? Or have you found other drugs work better? My doctor is one of the best in my area and I trust him. He recently told me that the status of the disease is still about where its always been which is they don't know a whole lot about it still, and there's still no cure.

 

[LadyyRedd]

I have Ulcerative Colitis, not Crohn's, but have found www.ccfa.org to be a wonderful resource.

Kimya

 

[Choc_marg]

I do I do!! I was diagnosed in 1996 at the age of 29. That was my first real flare up. I was put on Asulfadine and my symptoms cleared up almost immediately & I was symptom free for 4 years. Then I had another flare up in late 2000. I went right back on the same meds (doc had me off after a year or two with no issues). Again, the asulfadine cleared it right up for me. I have been symptom free for 7 years now.

I do have to watch what I eat. I don't eat a lot of raw veggies (salads) or other items that are hard to digest. If have a salad for lunch, I probably won't eat another one for a few days. Otherwise the digestion process is impacted.

I am one of the lucky ones. There are so many people that do not respond to such a low level drug & that have been very sick for a long time. My aunt has Crohn's and she ended up having to have a liver transplant as a result of prednisone side effects. Most of the time I forget I even have it. But, a colonoscopy definitely confirms it.

 

[anna_chronistic]

Yep. I just posted on another thread about recent procedures I had. The colonoscopy was one of them, and it verified I have Crohn's. I'll be going to my GI doctor next week to discuss it and figure out what lifestyle/diet changes I have to make. Until then, I'm on Pentasa and something else that starts with an A (don't have the scrip with me).

I am so, so, SO happy that my new doctor cared enough to pursue this. I've been suffering mildly for more than two years, and I've had three SEVERE flare-ups during that time. The most recent one, last month, was doubling-over-in-pain, waking-up-at-night, not-even-able-to-breathe-b/c-it-hurt-so-bad type of pain -- and that still doesn't really express it. I felt like one of the victims in "Alien." I was sure that, at any time, a slimy little extraterrestrial would explode out of my stomach. I joked with my sister that if this is what childbirth feels like (albeit with pain in a different location) I would NEVER have children.

What was so scary, in retrospect, was that my previous doctor was convinced it was nothing. And I (stupidly) believed that an MD after a person's name meant she would know more about my body than I do. I went to the doctor four times during my previous flare-up six months ago. She did no blood tests, no CT scan, no recommendation for a colonoscopy, no prescriptions for pain or even to "rule out" infection. Rather, she recommended that I try a variety of OTC medicines. I now have a medicine cabinet full of Tums, Imodium AD, Pepto Bismol -- geez, all kinds of stuff that I had never taken in my life before. None of them worked, and she just kept recommending different brands. I was miserable because I could not get her to understand that this was NOT normal, this was VERY painful, and I needed an answer. And of course, her brushing me off made me doubt myself, too. Was this really extraordinary pain? Is this just what "indigestion" feels like? Is that really all it is? That's what she would have me believe.

I my new doctor. He basically said, "You're 25 years old. This is not normal and we need to figure out what is going on." Thank you!

 

[Spidey7]

Thanks, glad your doing good, I'll definitely check into that med.

 

[Spidey7]

Yep. I just posted on another thread about recent procedures I had. The colonoscopy was one of them, and it verified I have Crohn's. I'll be going to my GI doctor next week to discuss it and figure out what lifestyle/diet changes I have to make. Until then, I'm on Pentasa and something else that starts with an A (don't have the scrip with me).

I am so, so, SO happy that my new doctor cared enough to pursue this. I've been suffering mildly for more than two years, and I've had three SEVERE flare-ups during that time. The most recent one, last month, was doubling-over-in-pain, waking-up-at-night, not-even-able-to-breathe-b/c-it-hurt-so-bad type of pain -- and that still doesn't really express it. I felt like one of the victims in "Alien." I was sure that, at any time, a slimy little extraterrestrial would explode out of my stomach. I joked with my sister that if this is what childbirth feels like (albeit with pain in a different location) I would NEVER have children.

What was so scary, in retrospect, was that my previous doctor was convinced it was nothing. And I (stupidly) believed that an MD after a person's name meant she would know more about my body than I do. I went to the doctor four times during my previous flare-up six months ago. She did no blood tests, no CT scan, no recommendation for a colonoscopy, no prescriptions for pain or even to "rule out" infection. Rather, she recommended that I try a variety of OTC medicines. I now have a medicine cabinet full of Tums, Imodium AD, Pepto Bismol -- geez, all kinds of stuff that I had never taken in my life before. None of them worked, and she just kept recommending different brands. I was miserable because I could not get her to understand that this was NOT normal, this was VERY painful, and I needed an answer. And of course, her brushing me off made me doubt myself, too. Was this really extraordinary pain? Is this just what "indigestion" feels like? Is that really all it is? That's what she would have me believe.

I my new doctor. He basically said, "You're 25 years old. This is not normal and we need to figure out what is going on." Thank you!

Wow, definitely glad you got that 2nd opinion, I think some Docs are lucky that they ever got that degree. Hope things get better. Mine is not near as bad as how your's sounds, but hopefully those meds will do the trick for you.

 

[anna_chronistic]

Thanks, Spidey!

Once I discovered what it was and learned that it was treatable, I stopped worrying so much. I'm glad you and your doctor were able to discover what was wrong before it became unbearable.

Here's to all the good doctors in the world!

 

[Aimeedyan]

Yes, I have it. like most chronic diseases, I have good and bad days. I have been to rock bottom (meeting with a surgeon about removing part of intestine after 2 hospitalizations with no medication would work) to feeling normal and eating anything I want.

I was dx 4 years ago, or so. I was initially on Remicade to heal the fistulas and it worked for 2.5 years until I started to build antibodies to it and react. That threw me in the hospital for a week. Then high dose Prednisone for awhile, but it didn't work anymore. Then put in the hospital again for another week.

Finally last March, we got authorization from my ins company to start on Humira. It hadn't been approved, at the time, for Crohns so we had to jump through hoops. 1 week after my loading dose, I was eating again. I had dropped 65 pounds in 3 months because I couldn't eat a thing.

I'm now on Humira and Imuran. I also do iron infusions since I am not absorbing iron and we're not sure why.

I recently made the choice to continue with the Humira and not dig deeper, at this point, about the cause for the loss of iron. Most days, I eat anything and everything I want. I do not restrict my diet. I know my body and know when I shouldn't eat a big salad, bag of popcorn, or peanuts. Sometimes I goof up and pay for it later but I usually do good. I adore food and just refuse to live without things on the off chance it affects me.

Stress is my biggest trigger, not food, so that makes it really hard for me. My first hospitalization was triggered by a maddening meeting at work that sent me over the edge. Within 3 days, I was admitted.

I am familiar with Pentasa but do not take it. I hope you are able to get help soon and feel free to ask me anything you would like. =)

 

[Robinrs]

My ex has it and they THOUGHT I did until it was ruled out.

He's had it since he was 17. He's had surgeries and has been on every possible drug you can imagine. His problem is not as much this disease but now he is schizophrenic so taking the meds are a problem.

They were never able to put a name on my problem. I had lots of the same symptoms, the pain, the weight loss, etc. I posted on another thread how I found a doctor who taught me how to eat and I nearly NEVER have any more problems... until I eat bad again!! My son gets on me when I do but believe me, I suffer for it!

Good luck with your diagnosis. Please check out a nutritionist, also. I stopped all of my meds after finding out the correct way to eat for my problem, and I was a walking pharmacy before!

 

[Spidey7]

Yes, I have it. like most chronic diseases, I have good and bad days. I have been to rock bottom (meeting with a surgeon about removing part of intestine after 2 hospitalizations with no medication would work) to feeling normal and eating anything I want.

I was dx 4 years ago, or so. I was initially on Remicade to heal the fistulas and it worked for 2.5 years until I started to build antibodies to it and react. That threw me in the hospital for a week. Then high dose Prednisone for awhile, but it didn't work anymore. Then put in the hospital again for another week.

Finally last March, we got authorization from my ins company to start on Humira. It hadn't been approved, at the time, for Crohns so we had to jump through hoops. 1 week after my loading dose, I was eating again. I had dropped 65 pounds in 3 months because I couldn't eat a thing.

I'm now on Humira and Imuran. I also do iron infusions since I am not absorbing iron and we're not sure why.

I recently made the choice to continue with the Humira and not dig deeper, at this point, about the cause for the loss of iron. Most days, I eat anything and everything I want. I do not restrict my diet. I know my body and know when I shouldn't eat a big salad, bag of popcorn, or peanuts. Sometimes I goof up and pay for it later but I usually do good. I adore food and just refuse to live without things on the off chance it affects me.

Stress is my biggest trigger, not food, so that makes it really hard for me. My first hospitalization was triggered by a maddening meeting at work that sent me over the edge. Within 3 days, I was admitted.

I am familiar with Pentasa but do not take it. I hope you are able to get help soon and feel free to ask me anything you would like. =)

Your case sounds more similar to mine although your condition sounds quite a bit worse than mine. I also started out with the fistula (abcess), and that is what I was initiallly treated for by an operation. It seemed to heal after about 6 months but came back, at that point they checked me for Chrohns and that seemed to be the cause. My point is in this post is that I still have the fistula to this day but we control that with the 2nd drug I'm on called Flagyl. It does seem to work and keeps it from flaring up pretty bad, you may want to ask your doctor about that.

 

[Dismom+two]

My 15 year old step son was just diagnosed with this. He will be going through a series of test the next few weeks to see just what he is up against.
I am starting to educated myself...thanks to Ladyyredd for posting that website...I popped it into my favorite places to refer back to later.

 

[LadyyRedd]

Your case sounds more similar to mine although your condition sounds quite a bit worse than mine. I also started out with the fistula (abcess), and that is what I was initiallly treated for by an operation. It seemed to heal after about 6 months but came back, at that point they checked me for Chrohns and that seemed to be the cause. My point is in this post is that I still have the fistula to this day but we control that with the 2nd drug I'm on called Flagyl. It does seem to work and keeps it from flaring up pretty bad, you may want to ask your doctor about that.

I was just on Flagyl (for the second time) for a stomach bug and it has got to the most disgusting antibiotic I've ever taken! GROSS!

Kimya

 

[EthansMom]

My DH just spent today having a capsule endoscopy (swallowed a camera pill) because his GI Dr. suspects he has Crohn's. He tested pos. for the blood test that is "suggestive" of Crohn's.

DH has spent the last 7-8 mos. in and out of extreme abdom. pain and is currently at a point where his intestines just can't handle any meats. He's eating a primarily vegetarian diet, which is helping with pain/discomfort, but didn't want to take any meds. until the capsule endoscopy confirms the diagnosis.

 

[sue1013]

I also have Crohn's. Was diagnosed about 15 years ago. I've been on prednisone and asacol in the past. Thankfully I haven't had to be on any medication for 7 years. I know what foods I can't eat or how much I can of certain foods. For me it's raw fruits and vegetables that I have to watch also dairy. It's not that I can't eat them but in limited quantities. If I ate an apple today at lunch then had salad for dinner that would not be good. The only food that I cannot eat at all is raw carrots. It took years for me to get the right balance for me. The hardest part with Crohn's is the same foods don't bother everyone, so it needs to be figured out for each individual.

 

[Aimeedyan]

Your case sounds more similar to mine although your condition sounds quite a bit worse than mine. I also started out with the fistula (abcess), and that is what I was initiallly treated for by an operation. It seemed to heal after about 6 months but came back, at that point they checked me for Chrohns and that seemed to be the cause. My point is in this post is that I still have the fistula to this day but we control that with the 2nd drug I'm on called Flagyl. It does seem to work and keeps it from flaring up pretty bad, you may want to ask your doctor about that.

Flagyl is a common antibotic - I've been on it many times for various things (not just Crohns) but it should never be used longterm. I hope they don't have you on it for too long. There are other medciations that are known to heal fistulas quickly, including Remicade. It's a super power medication, and it healed mine within 3 infusions. I had 3, they were mostly internal. Thankfully all gone! =)

Why is your doc not putting you on something to heal it quickly? Are you seeing a GI with exp with Crohns? Fistulas are nasty things and I can't imagine living with one... =( I'm sorry you're dealing with it.

 

[Aimeedyan]

My DH just spent today having a capsule endoscopy (swallowed a camera pill) because his GI Dr. suspects he has Crohn's. He tested pos. for the blood test that is "suggestive" of Crohn's.

DH has spent the last 7-8 mos. in and out of extreme abdom. pain and is currently at a point where his intestines just can't handle any meats. He's eating a primarily vegetarian diet, which is helping with pain/discomfort, but didn't want to take any meds. until the capsule endoscopy confirms the diagnosis.

I hope an answer is found soon. Most people don't get a dx of Crohns for a long time. Thankfully, I didn't go hunting for a dx very long but there are people on a support board I post on that go YEARS before convincing their doc something more than IBS is wrong.

I did go through a battery of tests to confirm it and by the end, I was ready for any dx. Just something to name it! You get so frustrated by not having answers. I'm sure your DH is ready for answers as well.

 

[crazee4mickey]

My sister has had it for over 20 years now and it is a severe case. She is approx. 5'6 and never weighs more than 100 lbs. She has had a miserable life because of this horrible disease.

There are quite a few others in this area that also have it but they seem to be doing fine and only have the occasional "flare up".

She has had many operations and now they cannot remove anymore intestine/bowel--she has had absolutely no life up until about 4-5 years ago when she started remicade (sp?)..it was experimental when she first started it.

She can actually go places and do things with her family that she has never been able to do before.

She has been taking both immuran and remicade (unsure of spellings) but over the last 1-2 years she has had small, white dry patches showing up on her hands. As it turns out it is skin cancer spots popping up all over her hands and just her hands. She is in the hospital at least once a week having more cut out---she has also had skin grafting.

They are now thinking it may be linked to one of the 2 drugs, more than likely immuran---not wanting to scare anyone just a precautionary "look out" type warning.

 

[Aimeedyan]

My sister has had it for over 20 years now and it is a severe case. She is approx. 5'6 and never weighs more than 100 lbs. She has had a miserable life because of this horrible disease.

There are quite a few others in this area that also have it but they seem to be doing fine and only have the occasional "flare up".

She has had many operations and now they cannot remove anymore intestine/bowel--she has had absolutely no life up until about 4-5 years ago when she started remicade (sp?)..it was experimental when she first started it.

She can actually go places and do things with her family that she has never been able to do before.

She has been taking both immuran and remicade (unsure of spellings) but over the last 1-2 years she has had small, white dry patches showing up on her hands. As it turns out it is skin cancer spots popping up all over her hands and just her hands. She is in the hospital at least once a week having more cut out---she has also had skin grafting.

They are now thinking it may be linked to one of the 2 drugs, more than likely immuran---not wanting to scare anyone just a precautionary "look out" type warning.

I'm so sorry about your sister. My fear is that I will eventually have a life like that... it's all too common. Both Remicade and Imuran have risks, along with the other stuff we use, because they are just so powerful. You're damned if you do, damned if you don't unfortunately.

=(

 

[EthansMom]

I hope an answer is found soon. Most people don't get a dx of Crohns for a long time. Thankfully, I didn't go hunting for a dx very long but there are people on a support board I post on that go YEARS before convincing their doc something more than IBS is wrong.

I did go through a battery of tests to confirm it and by the end, I was ready for any dx. Just something to name it! You get so frustrated by not having answers. I'm sure your DH is ready for answers as well.

Thanks for the supportive words. DH's GI doc is pretty sure the capsule endoscopy should confirm the diagnosis. And he has a medication lined up that he'd like DH to try (entocourt). DH just wanted to wait to get confirmation of the diagnosis first since taking meds could alter the test (make him better enough that the dr. wouldn't find anything visual).

As you say, the worst part is not knowing. DH spent one day in the ER because he was in so much pain. They took an MRI, found nothing, gave him vicodin, and sent him home. So frustrating... especially when some Drs. have been so quick to dismiss the pain as "transient". Chronic pain and discomfort shouldn't be ignored.

to everyone living with Crohn's.

 

[Aimeedyan]

Thanks for the supportive words. DH's GI doc is pretty sure the capsule endoscopy should confirm the diagnosis. And he has a medication lined up that he'd like DH to try (entocourt). DH just wanted to wait to get confirmation of the diagnosis first since taking meds could alter the test (make him better enough that the dr. wouldn't find anything visual).

As you say, the worst part is not knowing. DH spent one day in the ER because he was in so much pain. They took an MRI, found nothing, gave him vicodin, and sent him home. So frustrating... especially when some Drs. have been so quick to dismiss the pain as "transient". Chronic pain and discomfort shouldn't be ignored.

to everyone living with Crohn's.

I have never tried Entocourt but am familiar with it. I hope it gives him relief quickly once things are confirmed.

I know some Crohnies see a pain management doc because their GI doesn't take them seriously enough. I have been VERY lucky to have an amazing GI that makes sure my pain is under control. When I was admitted last time, the internal medicine doc assigned to me told the nurses to give me Ibuprofen for pain. I had a freakin' BLOCKAGE, was in the fetal position on the floor next to the trash can, and they couldn't give me anything stronger. My GI saw me the next morning and overwrote the earlier doc and hooked me up to morphine. A body can't heal itself if it's fighting pain constantly. And since my Crohns, at least, is so tied into my emotional state, the pain had to be in control before the intestines could be.

Update me when you find out for sure - is the doc thinking it's in the terminal ileum?