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Crohn's Disease Forum

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It was so out of the blue,startled me,I guess.I can't recall eating anything out of my usual diet that would cause gas.Pentasa sometimes does it,but usually I fart.I frequently have to suppress a smile when I talk about passing gas,I'm so juvenile at times. :) I revert from 50 to10.
 
dave13 said:
It was so out of the blue,startled me,I guess.I can't recall eating anything out of my usual diet that would cause gas.Pentasa sometimes does it,but usually I fart.I frequently have to suppress a smile when I talk about passing gas,I'm so juvenile at times. :) I revert from 50 to10.
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Haha :)
 
10 is good! This probably won't help, but I will put in my 2 cents! I had my resection, reversal and then hernia repair (same poor incision site), within 6 months. Then the healing finally began. About 6 months later, I started to have some unusual pains once in a while, around the surgery/incisional sites. It felt "different"... sometimes sharp with a type of burning sensation. One GI doctor (who I fired), said that it could simply be that the nerves were waking up, and that could be the cause. I would have been happy with that, just knowing that it was normal and would eventually go away. But, before I could bat my eyes twice, she stabbed me with a quick fix of probably a lidocaine based big needle! This put my surgical area back into a numb state for 4+ months and I did not have those funny pains.... until 4 months or so afterwards. They were icky and hurt, but I was relieved to know that it was just the nerves waking up..... and they went away eventually.

I have no clue if this is anything like what you are experiencing. If it is not, I apologize for rambling! Perfect timing that you are going to the doctor on Monday, so he can evaluate the situation. This Crohns/GI disease/disorder thing is so scary, (at least for a blonde), as even after 4 years, it is difficult to know when specific pain is ok/safe to put up with/just keep my mouth shut and just deal with it, OR- if it is a DANGER pain- an obstruction? an infection? A soon to be perforation?! My fingers are crossed that your pain will be explainable and easily fixable, rather than a flare or a set-back!
 
I'm hoping it is nothing to worry about.Since my blockage and resection I have been vigilant about how my 'guts' feel.I have not felt any other pain or discomfort other than what I posted.I have not experienced any symptoms I experienced prior to my blockage.

I'm anxious to talk with my GI tomorrow.I have only seen him once,three months after my resection.I liked him.He seems very knowledgeable about IBD and open to conversation and my concerns.He was the first Dr. who put his computer away and actually made eye contact and talked with me.
 
I was diagnosed October 2012 I was 49 but 50 now will be 51 in December. For years I had been told I had stress induced IBS and even though I had crohns/colitis my family doctor still believes I have stress induced IBS. If I get stressed really bad im in the bathroom with multiple trips. For years about 20 if not more I have suffered with bowel issues. I knew there was something very wrong when in 2008 I was horribly anemic I remember going to the bathroom and the toilet being full of blood I couldnt even climb stairs with out feeling dizzie. The the bathroom trips increased to around the clock I was still bleeding but though I had hemorrhoids or something never in a million years would I have thought I had crohns never. what I have most hated about the disease is the pity I receive from people when I tell them what I have. I never want to be pitied ever.
 
Hi Cleuger

Sorry you are having it so rough.I agree with you about how some people treat us.I get uncomfortable when I meet someone I knew 'pre CD'.I am in remission now and feel pretty good.If I meet someone from 'before' all the cliches come out..."you lost so much weight!","your so skinny",etc..I am not skinny.I am skinny to them.I was 35+ pounds heavier than I am now,which I do not want to gain back.

This may make you chuckle.I had a friend ask me if I was contagious.I thought he was making a joke,he was serious.

What we really need from people is support and some understanding.
 
clueger, love your name!! Seriously, what is Crohn's Colitis? I had colitis when I was diagnosed and on two colonoscopies ago, there were polyps, that had inflammation on them, so my GI said that meant I had Crohn's Colitis. My last colonoscopy showed no inflammation anywhere. I only had inflammation in my lower bowel. I am going on July 11th for another one, as the Pain and Exhaustion from the Remi is out of control. So they are thinking of taking me off it. I am so confused most days about all of this, although I have researched extensively, i get lost at ...Crohn's colitis. Ugh...is there really such a thing? I love my GI, I fired many before him. LOL He just tells me not to worry, I'm in remission, with Remi. But if they are taking me off Remi... HA! Happy Summer everyone!
 
@maggiesfour, this whole thing about changing diagnosis is driving me nuts. First have inflammation on one scope at terminal ileum, do a ton of drugs. Get my gallbladder out , now don't know if all symptoms were from gallbladder. ( Uh, no cause I've had these symptoms for 20 years :( ), so now doesn't know what to think. Last scope showed no inflammation but says all my drugs could have cleared it up. Now off to a specialist!! I'm praying somebody gets a diagnosis and sticks to it!! Meanwhile I'm on Entocort have good and bad days.
 
Maggiesfour - I was told first I had colitis and then years after was told it was Crohns and now it is Crohns colitis. Wish they would make up their minds.

I can't take regular Crohns meds as have become allergic to them and am only on Librium and Librax 4x/day. However, my GI doc is retiring and I can not find any doc to prescribe Librium. Have been on it since 2002 and have had a few flares but no more bleeding for 8 hours like in 2001 and then on Prednisone. Of course my bones went down. Now 14.7% below fracture level.

PCP knew for years I was taking Librium and now when I asked her to prescribe it for me she was yelling about how it is a bad drug and I won't wake up someday like Michael Jackson and I have been on it so long it is part of my DNA and she wants to wean me off to go on Ativan but if I wean off I will get another bleeding attack. I have been on the same dose all this time. She said she does not know how to wean me off either and I could have a seizure and stroke. Yes, I am elderly but it does nto seem to be affecting me = my liver and kidney enzymes are OK and I am not falling down so for goodness sake - if it aint broke don't fix it.

Does anyone have any suggestions about how to find a doctor in MA that will prescribe Librium for Crohns??

Thank you.
 
LodgeLady said:
@maggiesfour, this whole thing about changing diagnosis is driving me nuts. First have inflammation on one scope at terminal ileum, do a ton of drugs. Get my gallbladder out , now don't know if all symptoms were from gallbladder. ( Uh, no cause I've had these symptoms for 20 years :( ), so now doesn't know what to think. Last scope showed no inflammation but says all my drugs could have cleared it up. Now off to a specialist!! I'm praying somebody gets a diagnosis and sticks to it!! Meanwhile I'm on Entocort have good and bad days.
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Wow, I had my gall bladder and appendix out, but I think it was from the 6MP. But, what is Crohn's COLITIS, what does this mean? grrrr....But, how bad are your bad days? What other meds were you on that they think they put you in remission?
 
suggi said:
Maggiesfour - I was told first I had colitis and then years after was told it was Crohns and now it is Crohns colitis. Wish they would make up their minds.

I can't take regular Crohns meds as have become allergic to them and am only on Librium and Librax 4x/day. However, my GI doc is retiring and I can not find any doc to prescribe Librium. Have been on it since 2002 and have had a few flares but no more bleeding for 8 hours like in 2001 and then on Prednisone. Of course my bones went down. Now 14.7% below fracture level.

PCP knew for years I was taking Librium and now when I asked her to prescribe it for me she was yelling about how it is a bad drug and I won't wake up someday like Michael Jackson and I have been on it so long it is part of my DNA and she wants to wean me off to go on Ativan but if I wean off I will get another bleeding attack. I have been on the same dose all this time. She said she does not know how to wean me off either and I could have a seizure and stroke. Yes, I am elderly but it does nto seem to be affecting me = my liver and kidney enzymes are OK and I am not falling down so for goodness sake - if it aint broke don't fix it.

Does anyone have any suggestions about how to find a doctor in MA that will prescribe Librium for Crohns??

Thank you.
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Crimmie Suggi, if they take you off Librax and put you on Ativan, we will surely be calling you MJ. What is wrong with some of these doctors. I do believe for the most part they mean well, they are just clueless. How about this? Ask your Dr. to refer you to a Pain Specialist. That's what who I go to now, and the Pain Specialist should keep you on the Librax, as they hate to mess with what works. (they are all Anestesiologists who were thrown into the office) That should help you. What are you doing for your bones? You need to feed them...OP is reversible. Happy Wednesday.
 
Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's. Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.
I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month. Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work. Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode. Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI? Helloooooo is anyone home in there - really? Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly? Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now. Or will you ever get better - better than what?
My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.
Okay...done ranting now. Will go back to being calm and happy and smiling at the lunacy.
 
cleuger said:
I was diagnosed October 2012 I was 49 but 50 now will be 51 in December. For years I had been told I had stress induced IBS and even though I had crohns/colitis my family doctor still believes I have stress induced IBS. If I get stressed really bad im in the bathroom with multiple trips. For years about 20 if not more I have suffered with bowel issues. I knew there was something very wrong when in 2008 I was horribly anemic I remember going to the bathroom and the toilet being full of blood I couldnt even climb stairs with out feeling dizzie. The the bathroom trips increased to around the clock I was still bleeding but though I had hemorrhoids or something never in a million years would I have thought I had crohns never. what I have most hated about the disease is the pity I receive from people when I tell them what I have. I never want to be pitied ever.
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Wow, to hear your story amazed me. That is almost exactly how it went for me. I was just diagnosed 2 weeks ago. And LOL - I feel :ybatty: most days too!
 
Grumpy1 said:
Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's. Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.
I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month. Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work. Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode. Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI? Helloooooo is anyone home in there - really? Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly? Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now. Or will you ever get better - better than what?
My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.
Okay...done ranting now. Will go back to being calm and happy and smiling at the lunacy.
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Grumply, thank you for that! I was laughing so hard I got strangled. :rof:
 
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Grumpy1 said:
Okay guys, having read the above posts I get to add my two cents to the silly but well meaning things that people say every day when they find out you have Crohn's. Please understand that I am between meds and haven't been on anything since April 8th for my acute crohn's (also called crohn's/colitis)- so am in full blown episode, not eating properly because I have no appetite, am anemic again and probably grumpy and a little on the edge am normally rather sarcastic so am really sarcastic at the moment.

I got some flipping virus that was going around here and was pretty sick - no voice, coughing, generally miserable - my boss being the sweet human being she is suggests that I go on medical unemployment for a month. Okay...I have lived through 18 months of hell (took that long to get a diagnosis) missed no time from work. Missed one week while I was in the hospital after the Imuran induced pacreatitis/gall bladder episode. Missed three days after the remicade deal (serum sickness) where I looked like the stay puffed marshmellow man and could barely walk - and a flu is going to make me go on Medical EI? Helloooooo is anyone home in there - really? Or talking about going on vacation with friends and I hear from one of the most intelligent people I know - can you fly? Yep just let me unfold my wings...I couldn't fly before I got sick you idiot what makes you think I can fly now. Or will you ever get better - better than what?

My very favorite so far is - "there must be something you can take for that" - yes there is you idiot but I don't take it because I enjoy feeling like someone is pulling my insides out through my nose, yanking my joints through my skin and causing my body to cringe at every move, I particularly enjoy it when my joints seize and I look like I'm 150 years old when I try to move and feel like someone is sticking hot knives in my joints - you should try it.

Okay...done ranting now. Will go back to being calm and happy and smiling at the lunacy.
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Hahahahahahahah....( wiping happy tears away). :) I don't know if your post was meant to be funny but I found it hysterical ! ( I love sarcasm by the way) Oh it never ceases to amaze me how people just don't get this disease. Thanks for the laugh.
 
Laughngirl,

Was not my intent to strangle you - just to supply some levity to the lunacy. Thank you for the mental image though, made me laugh - not so hard that I got strangled just started snorting - not a pretty picture by the way a 53 yr old sitting at her desk alone in an office snorting with laughter - the guys outside my office were probably considering calling those people with the little white coats.
 
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LodgeLady said:
Hahahahahahahah....( wiping happy tears away). :) I don't know if your post was meant to be funny but I found it hysterical ! ( I love sarcasm by the way) Oh it never ceases to amaze me how people just don't get this disease. Thanks for the laugh.
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You are very welcome!:rof:
 
sticking hot knives...


YUP! I get why others don't get it...we all do. It's just really crappy, lol. But I still do not understand what Crohn's Colis is. Colitis is continuous disease, Crohn's jumps...Colitis you can get surgery, and its done. Crohn's you can get surgery, but it will still keep growing in various places...Yes this is a sophomoric description but it works for me. What is Crohn's Colitis?

***Gosh I was laughing so hard...at work...oy!
 
maggiesfour said:
sticking hot knives...





YUP! I get why others don't get it...we all do. It's just really crappy, lol. But I still do not understand what Crohn's Colis is. Colitis is continuous disease, Crohn's jumps...Colitis you can get surgery, and its done. Crohn's you can get surgery, but it will still keep growing in various places...Yes this is a sophomoric description but it works for me. What is Crohn's Colitis?



***Gosh I was laughing so hard...at work...oy!
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Well my doctor explained that Crohn's Colitis is the term that encompasses the whole disease entity. Crohn's or UC defines what type of Crohn's Colitis you have. Make sense? I was just as confused after his answer as I was before, but whatever .
 
LodgeLady said:
Well my doctor explained that Crohn's Colitis is the term that encompasses the whole disease entity. Crohn's or UC defines what type of Crohn's Colitis you have. Make sense? I was just as confused after his answer as I was before, but whatever .
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No, it does not make sense to me. In other words, with UC, you can have surgery, and be healed. You may have IBS symptoms, but, that's it. With Crohn's, that will never be the case. That is why the two are so very different. UC is only on in your lower bowel, and the ulcerations are continuous. With Crohn's, the disease can go from the esophagus to the lower bowel, and the ulcerations skip.

Those are the true definitions. So...there is no such thing as Crohn's colitis. The inflammation is either continuous or not. It is either in lower bowel only or potentially everywhere. Soooooo...that does not make sense, what your doctor says. IBD describes the whole disease entity. Irritable Bowel Disease, which is either Ulcerative Colitis, which is continuous, and lower bowel only, or Crohn's, which is ulceration that skips anywhere from esophagus, to lower bowel.

My doctor said...I have UC, but because I had four polyps, in the lower bowel, and those were disease differently than the long ulceration, that meant it was Crohn's Colitis. AND that doesn't make sense.

If anyone can explain further...I would love it. Wishing you all a peaceful nights sleep.
 
maggiesfour said:
Those are the true definitions. So...there is no such thing as Crohn's colitis. The inflammation is either continuous or not. It is either in lower bowel only or potentially everywhere. Soooooo...that does not make sense, what your doctor says. IBD describes the whole disease entity. Irritable Bowel Disease, which is either Ulcerative Colitis, which is continuous, and lower bowel only, or Crohn's, which is ulceration that skips anywhere from esophagus, to lower bowel.
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I was only diagnosed in December 2013 and am not an expert here, so the only thing I can say is I have ulcers (lots) throughout my small intestine and my large intestine. I was erroneously diagnosed with bowel cancer and scheduled for a colonoscopy to determine where and what stage. My surgeon called me and told me she had scheduled me an appointment with a gastroenterologist the same morning that I was to see her for my results. When I met him he gave me my results and explained that I didn't have cancer that I had something called acute Crohn's or Crohn's/Colitis. His explanation was - Crohn's usually only hits in one place at a time i.e. small intestine or stomach - and although it can jump from place to place anywhere from your anus to your mouth it usually only affects one place at a time - when it affects more than one place at a time, i.e. large intestine and stomach it becomes "acute" or what they call Crohn's/Colitis it makes you a "critical" case according to my Gastroenterologist because it makes it harder to control the disease because they have to alter the medications or add medications to control stomach acids or your mouth dryness or... Frankly at the time it was all French to me and it still is. Clear as mud right?
 
Grumpy1 said:
I was only diagnosed in December 2013 and am not an expert here, so the only thing I can say is I have ulcers (lots) throughout my small intestine and my large intestine. I was erroneously diagnosed with bowel cancer and scheduled for a colonoscopy to determine where and what stage. My surgeon called me and told me she had scheduled me an appointment with a gastroenterologist the same morning that I was to see her for my results. When I met him he gave me my results and explained that I didn't have cancer that I had something called acute Crohn's or Crohn's/Colitis. His explanation was - Crohn's usually only hits in one place at a time i.e. small intestine or stomach - and although it can jump from place to place anywhere from your anus to your mouth it usually only affects one place at a time - when it affects more than one place at a time, i.e. large intestine and stomach it becomes "acute" or what they call Crohn's/Colitis it makes you a "critical" case according to my Gastroenterologist because it makes it harder to control the disease because they have to alter the medications or add medications to control stomach acids or your mouth dryness or... Frankly at the time it was all French to me and it still is. Clear as mud right?
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Wow, Grumpy, okay, so first I am glad that you don't have cancer. Again, why Crohn's/Colitis, because there is Acute Colitis or severe, which I had, and then there is acute or sever Crohns. I have a colonoscopy on July 11, and I will ask for pictures if I need. If I want to go for surgery, I want to make sure, it is cleared and not show up anywhere else. That only applies to Colitis. If I have Crohn's, I won't go for surgery. Does that make sense? LOLOL That made me laugh really hard as everything in my life at this time is clear as mud. Thanks for the new expression!!
 
Hello all. I have been reading your posts and find them all very interesting. I have not been on here in quite a while and I am new to this group. I would like to ask your thoughts on my situation. I was diagnosed with Crohn's January 2011, right before my 50th birthday, actually got out of the hospital the day before turning 50!! Since then I have been on Remicade, which caused drug induced liver damage (had liver biopsy), had a small bowel resection, 6mp only lasting 3 days because of severe side effects, Methotrexate weekly injections for 4 months when it stopped working, then on to Humira, weekly injections, which worked for about 6 months, kept having flare up so they added Methotrexate back in with the Humira. That lasted about 4 months then I had severe side effects from the Methotrexate and stopped that and was only on Humira which was good for about a year. In March 2014, my blood count dropped, April 1, 2014 had colonoscopy and they found inflammation again. So now I am of off Humira and was suppose to go into clinical trial, but did not meet the protocol. I was put on Entocort and Pentasa for a few weeks to treat the symptoms and would have been part of the trial but CRP levels drop and not enough inflammation, so doctors took me off those to see if I would have a flare up so they could get me into the study, after being on no medication for 3 weeks it did not happen . So they put me back on Entocort and Pentasa and now after being back on them for about 2 weeks I am feeling bad again. I contacted my doctor because I thought I was having side effects of medication, but doctors always say it the Crohn's. They did blood test said my CRP levels not high, so they said it must not be the Crohn's and thats that. No other comment on what it could be.

Sorry this is so long, just want to get all in. So at this point I am very frustrated with doctors, I have been to two "best in their field experts" and seem to end up back at my regular GI doc. My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing. I got thrush in my mouth and am on meds for that. So now I am back off the Pentasa and Entocort to see if I was right and it was side effects. I also go to an internal medicine doctor and she is monitoring all the other things. Does anyone else ever feel like once you have been diagnosed with Crohn's you are labled as a Crohn's person and anything and everything that is wrong must be from the Crohn's? Maybe my feeling bad is from something entirely not related to the Crohn's, but once a doctor knows you have Crohn's it is always the Crohn's and that is what they focus on.

Thanks in advance for any input.
 
becls, so sorry to hear about your situation. I went into the hospital on my 53rd birthday, so I know how you feel. I went through 6 doctors until I found the one I am with now, which is my 7th.

Might I ask, what is your diet like? What type of exercise do you do? What beverages do you drink daily? What multi and other supplements do you take?
 
Yes I do think docs attribute most of our complaints to Crohns. My GI totally missed my inflamed gallbladder which I almost had to have emergency surgery. I did have it removed and he clearly knew he missed it.
 
Thanks maggiesfour and LodgeLady for your responses. I usually eat a low fiber diet, not much bread, occasional salad, and rarely eat fast food. I drink mostly water, some juices and have a couple cups of coffee a day, sometime for that extra boost to get through the afternoon. I take vitamin e and c. I just joined a gym and a personal trainer because I had began to feel better but got sick and missed my first appointment. Very disappointing. I am usually pretty active unless I am feeling bad.
 
Hello all,
Trying to navigate my way around this web site still. I was dx June 2014 with Crohn's. Spent a total of over 3 weeks in the hospital. Took Antibiotics, Prednisone, Imuran through IV. I'm 54 years old and this is quite a life altering shock. I'm out of work for the first time ever, lost 45lbs, have no muscle anymore when before all this started I was in great physical shape. It's been 2 weeks since I left the hospital and my condition was slipping so I started Remicade infusions yesterday. The Remicade absolutely kicked the shit out of me last night! I was on the toilet with the most excruciating abdominal, colon pain while extreme nausea and vomiting all at the same. Has this happened to anyone else on Remicade? I'm afraid to eat anything this morning.
 
Hi Rick. How are you feeling now? I'm sorry to hear about your diagnosis and time in hospital. What a shock and it sounds like your disease is quite severe. If you are still experiencing severe pain and vomiting, I would call your GI or IBD nurse if you have one and see what they suggest.
 
Hi Everyone: I haven't posted in awhile so thought I would give an update. I went to the Mayo Clinic in March and saw Dr. Sunandra Kane. She ordered a scope (retrograde) and it revealed a stricture that was 1/4 of the size it should be. I had surgery on April 28th and they took out 8 inches of my small bowel and my appendix. I go back in August for a CT enterography to determine if there is any inflammation building up again. I will keep you posted.
 
rickm37-- Sorry to hear you are having such a hard time. I got diagonsed 3 years ago and I started out on Remicade and I do remember being really tired for a few days afterwards some cramping (not severe), nausea or diahrrea but it also turned out that I still had inflammation that would not go away with treatment of Remicade. I hope you get to feeling better.
 
Greetings ! Just joined the forum a couple days ago and thought I'd hop onboard with the "over 50" crowd seeing that I turned 65 this month. Whee.:drink:

So here I am. You can find "my story" initial post with the "newbie" tag over there under My Story..guess that would save me from having to repost it. :tongue:

Hope to both learn something here as well as offer support. It's important for us "pain in the arse" peeps to stick together, yes? :hug:
 
becls said:
Hello all. I have been reading your posts and find them all very interesting. I have not been on here in quite a while and I am new to this group. I would like to ask your thoughts on my situation. I was diagnosed with Crohn's January 2011, right before my 50th birthday, actually got out of the hospital the day before turning 50!! Since then I have been on Remicade, which caused drug induced liver damage (had liver biopsy), had a small bowel resection, 6mp only lasting 3 days because of severe side effects, Methotrexate weekly injections for 4 months when it stopped working, then on to Humira, weekly injections, which worked for about 6 months, kept having flare up so they added Methotrexate back in with the Humira. That lasted about 4 months then I had severe side effects from the Methotrexate and stopped that and was only on Humira which was good for about a year. In March 2014, my blood count dropped, April 1, 2014 had colonoscopy and they found inflammation again. So now I am of off Humira and was suppose to go into clinical trial, but did not meet the protocol. I was put on Entocort and Pentasa for a few weeks to treat the symptoms and would have been part of the trial but CRP levels drop and not enough inflammation, so doctors took me off those to see if I would have a flare up so they could get me into the study, after being on no medication for 3 weeks it did not happen . So they put me back on Entocort and Pentasa and now after being back on them for about 2 weeks I am feeling bad again. I contacted my doctor because I thought I was having side effects of medication, but doctors always say it the Crohn's. They did blood test said my CRP levels not high, so they said it must not be the Crohn's and thats that. No other comment on what it could be.

Sorry this is so long, just want to get all in. So at this point I am very frustrated with doctors, I have been to two "best in their field experts" and seem to end up back at my regular GI doc. My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing. I got thrush in my mouth and am on meds for that. So now I am back off the Pentasa and Entocort to see if I was right and it was side effects. I also go to an internal medicine doctor and she is monitoring all the other things. Does anyone else ever feel like once you have been diagnosed with Crohn's you are labled as a Crohn's person and anything and everything that is wrong must be from the Crohn's? Maybe my feeling bad is from something entirely not related to the Crohn's, but once a doctor knows you have Crohn's it is always the Crohn's and that is what they focus on.

Thanks in advance for any input.
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Hey Becls,
You have been on my mind, and then it hit me this morning. You could possibly have candida, especially because you had thrush. It fits, and then, if I may get this straight: they took you off meds, you were fine, felt find, and then they put you back on meds and you felt worse. So, this I don't understand.

Google Candida, and see if those symptoms feel familiar to you. Two of my children just finished this process and haven't seem them look and feel this healthy since they were in high school. Pretty interesting stuff. Let us know what you think.
 
Becls,
My problem is I keep feeling bad, dizziness, fatigue, nausea, diahhrea, pain in my right side, now I am having flushing. I got thrush in my mouth and am on meds for that. This comment you made is true with me also. I don't have thrush though what I do have is hairy tongue which is a white coating on the tongue. I think drugs themselves cause a great deal of side effects and combined with Crohn's things canget wierd.
If you have decent health insurance then I would push hard to force the doctors to look beyond Crohn's and try to find what is wrong though I as I said, I have all the symptoms you do which is I think due to the Crohn's.
Thrush generally is on the tongue, cheeks and down the throat. When I was at the dentist he said it was hairy tongue, not thrush, and to gargle with salty warm water three times a day and use you toothbrush on it to clean the surface off. It has helped though it will never go away. I am on 1ml of methotrexate injections one a week.
Best of luck
Whit
 
I'm part of the 50 and over crowd, having just been provisionally diagnosed last week. Looking back, I've had bowel issues for years, particularly lactose intolerance, but it was when I started having bloody BMs that I actually asked a doc about it. I had also broken foot at about the same time as I started noticing the blood, and the doc asked questions, and attributed the bleeding to fissures or internal hemorrhoids. He told me to give it a month or so. By the time I got back to him in late April, I was still bleeding, and he referred me for a colonoscopy. It took three months to get in for that, and even then, laying on the bed, the GI doc suspected an internal hemorrhoid and had me sign consent for banding. I'd been doing quite a bit of reading before the colonoscopy and I suspected ulcerative colitis. He suspects Crohn's colitis -- Crohn's because the inflammation is patchy in several areas, but seems to be confined to my colon. The blood work is being done and I need to still submit stool samples. I've also been referred for a CT scan. I see the GI guy again in September. In the meantime, he's put me on Pentasa tablets (those suckers are almost big enough to choke a horse!) and Salofalk suppositories. In less then a week, the bleeding is no longer visible. My tummy still rumbles, but I'm keeping the fibre pretty low.

I didn't know much about Crohn's before this week, and I have to admit some of the experiences I've read about here have me a little freaked. Do people always get worse? Or is it possible I've caught mine early enough that I can be maintained for a long time?

I teach junior high full time, and managed to continue with a broken foot and a bleeding behind last spring, so I'm obviously not that bad off -- I'm just hoping I can stay that way because retirement is a few years away yet!
 
You can get better. I found a great GI doc after I was diagnosed at age 68 and though my Crohn's is in the small intestine, diet. low fibre foods and a methotrexate injection one a week is bringing back to a "new normal".
Remember to be your own health care advocate and ask lots of questions.
Good luck
Whit
 
Hi polgara59

Learning about what we do,and can,go through can freak you out a little.There are people in remission for years.Will you be one of them? I hope so.Vigilant and proactive are good things to be.Good luck!

I keep a notebook handy and write down questions for the next doctor appointment.I am fortunate to have a GI who returns my calls...eventually:) He has called me as late as 7:30 pm to answer a question,I was gobsmacked.

Don't hesitate to call your GI with questions or follow up on questions.I'm just getting use to this new normal myself.
 
carbuncle said:
LodgeLady,



About 9-10 months ago, I was having gall stone symptoms. I had an ultrasound to verify gall stones and then was referred to a GI surgeon. After reviewing current symptoms and ultrasound, surgeon recommended not to remove gall bladder as the surgeon had a significant number of patients where the gall bladder removal either triggered a flare or new crohns symptoms. I decided against surgery as the symptoms had subsided. Sometimes the stones move in and out of the gall bladder.



Hope this helps.
Click to expand...


Carbuncle you were right . Four months later after GB surgery I started flaring again. Back on Entocort and Pentasa with an Upper GI to follow. And back with the Crohns diagnosis.
 
louann my doctor recommended methotrexate . iam afraid of side effecta kidney and liver damage what is your experience with this drug. i was on remicade before and it had few side effects

gerry
 
carrollco said:
Hello! Diagnosed at 32 with extreme IBS, diagnosed with Crohn's at 56. I am sure I would have been diagnosed sooner but I refused to see a doctor or to even tell anyone about it because they convinced me it was all in my head. Oh. I just turned 59 AND started Remicade which has turned my life around.
Click to expand...

i was diagnosed at 50 with crohns i took remicade iam 69 . i had a resection at 65 the doctor suggest methotrexate what do u think of this drug gtc45
 
dave13 said:
Hi polgara59

Learning about what we do,and can,go through can freak you out a little.There are people in remission for years.Will you be one of them? I hope so.Vigilant and proactive are good things to be.Good luck!
Click to expand...
If remission is being able to eat relatively normally without cramping and D, then I think I sorta had that for a few weeks. Fortunately it was while I was out camping with family. I did learn too much fat isn't a good thing.

Then on Monday I ate something that set me off, and I've been off ever since. Last night I was wondering how I could take my Pentasa with food when my guts were rolling and everything was going right through me. I made it, and today's better but still not great.

Still waiting to hear from the hospital about my CT scan -- will try to remember to call tomorrow while I'm minding a couple of the grandkids...
 
My understanding is there are different types of remission.I have active perianal crohns,I had a fistulotomy and three setons placed about five weeks ago.

I have also had a resection in my jejunum in 11-13.I had a SBFT in July.I'm told this test checks from the duodenojejunal junction to the ileocical valve.It took over eight hours...that's another story for another day.I was shown the images and told there is no sign of inflammation in the upper GI at this time.The sections of jejunum that were reconnected after the resection have no signs of CD and look healthy.

My stricturing CD may be in surgical remission,the penetrating CD is not.I still have active CD,just not in my jejunum.

Maybe someone can clarify the different kinds of remission and how they are achieved.I'll check the resources section in the meantime.
 
I am wondering if remission ever means symptom free? I am giving into the fact that I will always have some occasional pain, nausea, cramp. I am willing to live with that as long as the medicine side affects don't cause other symptoms.
 
dave13 said:
My understanding is there are different types of remission.I have active perianal crohns,I had a fistulotomy and three setons placed about five weeks ago.

I have also had a resection in my jejunum in 11-13.I had a SBFT in July.I'm told this test checks from the duodenojejunal junction to the ileocical valve.It took over eight hours...that's another story for another day.I was shown the images and told there is no sign of inflammation in the upper GI at this time.The sections of jejunum that were reconnected after the resection have no signs of CD and look healthy.

My stricturing CD may be in surgical remission,the penetrating CD is not.I still have active CD,just not in my jejunum.

Maybe someone can clarify the different kinds of remission and how they are achieved.I'll check the resources section in the meantime.
Click to expand...
Dave, As you are aware I also have Perianal Crohns. However, I am thinking I am in a state of remission since January, 2014. The 3 current fistulas I have developed after two significant 6-8 weeks flares of extensive diarrhea & mucus the first in 2012 & the second in 2013. I have radically changed my diet & added supplements. I just received blood work results yesterday & they seem to reflect how I feel. The blood work values also look good. I'll share some of the highlights with you:
CRP .65 Range .00-7.99
Vitamin B12 1092 Range 156-672 (Will discontinue my injections)
Iron 20.14 Range 7.00-30.40
WBC 5.13 Range 4.50-11.00
RBC 4.39 Range 3.80-5.80
So I have been diarrhea & mucus flare free since January, 2014. The blood work looks good. I am scheduled for a colonoscopy in September. If that supports the blood work & how I feel I would deem myself to be in a state of remission. If the colonoscopy indicates Crohn's & contradicts the blood work then I am unfortunately not in a state of remission despite how I feel : ( That is how I understand Crohn's can sometimes mislead us : (
 
Today I learned there was a screwup and I wasn't referred for a CT scan (a newbie at the endo clinic apparently messed up), but that they want me to go on remicade so I need to go for a chest x-ray. I had the entire month of August where I could havedone that; now I have to try to fit it in on Monday, my first day back at school. Good thing we don't have students on Monday.

So now I'm learning about remicade and thinking things must be more severe than I thought if the doc is considering remicade.

*sigh*
 
polgara59 said:
So now I'm learning about remicade and thinking things must be more severe than I thought if the doc is considering remicade.

*sigh*
Click to expand...

Some doctors start with Remicade to hit your CD hard right off the bat.Some start with milder meds and work up.
 
Hello and thank you for starting this support group ,I'm 59 and am in shock with this (inconclusive ) diagnosis ,due to have the dreaded colonoscopy next week ,any tips on how to handle prep.and how to eat afterwards .I really don't want to loose any more weight so looking for high calorie suggestions for the day before .thank you also can this procedure cause a "flare up " ?
 
Reply to all the recent posts,
I have been on methotrexate for four months and after initial nausea, feeling like a zombie at time and exhaustion I began to feel much better.
I had a blood test every two weeks to check for liver damage and to make sure the white blood cell count was normal and then it went to once a month and now I am on every three months. So far the tests have been normal.

The pain in my lower abdomen has mostly gone away for the first time in years though when I eat too much fat it flares up and reminds me that I can never eat the foods I used too.

The prep for my colonoscopy was the swallowing the same awful liquid everyone else swallowed and staying near a toilet. I ate a soft diet for a few days afterward, especially yogurt, and then proceeded to some fish etc. I think as to whether a colonoscopy will cause a flare is an individual thing.
Good luck to all
So far I am a believer in methotrexate.
Whit
 
I have been on methotrexate for various periods of time in the past 6 or 8 years, for my connective tissue disease. I am just wondering what dose you are on, Whit, and if you take it PO or IM. I am glad that it is kicking in and working for you!
 
Supposed to be re-starting Humira and taking methotrexate to stop my body from developing antibodies to the Humira - hopefully starting this or next week so that I can finally get off the prednisone merry-go-round. A little nervous about losing my hair but I figure I can get a wig before I can get new intestines so the trade off is not so bad - the other possible side effects didn't worry me - so what does that say? :eek2:
 
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Grumpy1 said:
Supposed to be re-starting Humira and taking methotrexate to stop my body from developing antibodies to the Humira - hopefully starting this or next week so that I can finally get off the prednisone merry-go-round. A little nervous about losing my hair but I figure I can get a wig before I can get new intestines so the trade off is not so bad - the other possible side effects didn't worry me - so what does that say? :eek2:
Click to expand...

Oral mtx or injection ?

Oral is harder on the hair
Ask about Folic acid

Just started Humira myself
Been on mtx injections 6 months

They tried switching me to tabs, but I don't absorb it that way
 
Droopy Drawers said:
Oral mtx or injection ?

Oral is harder on the hair
Ask about Folic acid

Just started Humira myself
Been on mtx injections 6 months

They tried switching me to tabs, but I don't absorb it that way
Click to expand...

Injections so far I have had a real problem with the meds for crohns and am hoping this will be the answer - and I will ask about folic acid thanks. I lost my hair partially once before from another illness years ago and it was traumatic especially because it didn't all grow back in the temple area and that really hit me hard. My daughter says we can be twins though because she is on chemo again so it will be interesting anyway.

Did you find the Humira works well?
 
Grumpy1 said:
Injections so far I have had a real problem with the meds for crohns and am hoping this will be the answer - and I will ask about folic acid thanks. I lost my hair partially once before from another illness years ago and it was traumatic especially because it didn't all grow back in the temple area and that really hit me hard. My daughter says we can be twins though because she is on chemo again so it will be interesting anyway.

Did you find the Humira works well?
Click to expand...
Just had my first dose of Humira on Friday
No idea if I'm honest

I also was just informed I have Ra

Right now I can't tell exactly where the pain is coming from

All I know is I'm one hurting puppy

Hope you feel better soon

Whoever called this the golden years should be shot :lol:
 
Grumpy1 said:
Hmmmm I have Ra too! from the Crohn's - not nice
Click to expand...
Rheumy has been hounding me to start Humira for a year, but I was afraid

Right shoulder locked & felt like you could fry an egg on it several weeks ago
Rheumy gave me a cortisone injection in my shoulder & said this is it , Kiddo just tell me where you want the Humira delivered

Just the kick up the backside I needed
 
I didn't have a lot of choice here, Imuran and remicade were definate no no's and had some difficulty with humira with swelling 7 days after the first 4 loading doses - they immediately stopped it and put me back on pred (which I hate) now it will be the humira and methotrexate after seeing family doctor, allergist, GI and setting an appt with the rheumy - beginning to form a distinct dislike for doctors too! Or perhaps I should say a more pronounced dislike as it seems like I am living with them instead of seeing one every couple of years when absolutely necessary.

I hope that your shoulder gets better soon, and that the humira works for you.
 
Hi
My name is john, I am 67 years young :) and I have suffered from IBS I was told for over 30 years. It was on my 5th 999 admittance to hospital for severe stomach pain another consultant (Dr Subhani) wanted tests to find out what was really happening. Literally less than a minute into my barium meal it was obviously crohns I was told. I have 5 strictures in my small bowel and one at the terminal ileum. If this treatment fails I have another consultant who has examined me and my notes to remove the offending nasties :) my CRP of > 100 and the stool test was mega high. My treatment since diagnosis has been excellent. I was on aziathioprine, mecaptapyrin methotrexate but all severely affected me badly. Just over a year ago was put onto 8 weekly infliximab (remicade) infusions and what a difference! I still had 'bad days" ( I also have paraplegia @ T10, Ménière's disease and worn out shoulder/arm joints from 30 years in my chair :) but on the whole life is good (I am a Christian and my faith, family and friends have been great). I fully understand those black days when pain seems to be everywhere and just moving is agony. The better days do come. My consultant is brilliant and actually talks to my wife and I as friends so I feel not just treated but cared for. I discovered this support forum and it is great to see others encouraging and supporting each other and I wanted to introduce myself. There is life after and with crohns, it maybe different but is good and precious.
Shalom john
 
Thanks, Whit. I am taking a break from the Methotrexate. My poor internal medicine doctor is treating me for everything, as I cannot afford to be trit trotting to and fro the cardiologist, rheumatologist, Colon/GI/Surgeon, etc. She is doing a fine job, but the immunosupressant (sp) drugs scare her a bit. My WBC dropped, and so she took me off, even though my oncologist was not worried. Yes, and I took the folic acid too.
 
Fozheart,
I have fears about mtx also. It seems that suppressing my immune system has allowed other conditions I have hoped were under control to re-emerge.
I have post hepatic neuralgia from shingles which, since I started mtx, has come back with pain, mouth lesions and swelling etc. I hope to get off it soon as my GI says there is a new promising drug coming on the market soon with little or no side effects though I have forgotten its name.
What specifically worries your doc about mtx?
Thanks,
Whit
 
i am 69 and had a resection at 65 i was on remicade. the doctor wants me to be put on cimzia. my brother is on it and it works for him he got crohns at 69. i got it at 50. they say its heredity but i think stress creates crohns i am scared of this drug, contact me as soon as possible gt45 or [email protected]. iwas on 6mp asacol, iam now on endecort
 
Whit said:
Fozheart,
I have fears about mtx also. It seems that suppressing my immune system has allowed other conditions I have hoped were under control to re-emerge.
I have post hepatic neuralgia from shingles which, since I started mtx, has come back with pain, mouth lesions and swelling etc. I hope to get off it soon as my GI says there is a new promising drug coming on the market soon with little or no side effects though I have forgotten its name.
What specifically worries your doc about mtx?
Thanks,
Whit
Click to expand...

Hi Whit,
If there is a new a promising drug coming out with no side effects, that would surprise me, but good luck. I am sorry about the complications of having shingles` I know what that is like, and also the mouth sores. (and nose sores for me, AND sores on my bony tush, from the pressure of sitting or even lying in bed. MTX alone has not done much for me, except for my conncective tissue disease. But, it has put me in a bind quite a few times- and a few hospitalizations, fro messing up my blood, but mostly making me susceptible to bronchitis, pnemonia, etc. It may have even been the culprit of my spiraling O2 saturate, which put me on oxygen 24/7 for 4 months. I am just tired, and done with even trying to find the right answer. Right now I need to grin and bear it with this GI stuff- I have been neglecting other things, and need to somehow get into the cardiologist, rheumy, time for a checkup on my shunt with the neurosurgeon, pulmonologist, and oncologist. Just very tired, and out of money. I really push myself and try to be as discreet as possible with my dumb problems, but I am tired. Very tired. I don't thik I can continue to fight all of these battles. I just want to be comfortable, which my internal med dr. is in agreement with, and I want to enjoy the small things I can. Good luck to you Whit, and all of my friends on here. Sorry for the typos!
 
I am sorry to hear about your complications which seem to be much worse and more extensive than mine. Did you regular doctor take you off the MTX? I'll be seeing mine soon.
Whit
 
Hello All, This is going to be a bit long and I apologize for that, but really need some advice from those who know. I was diagnosed about 4 months ago with Crohns, and have been on only the powder that helps with bile. My GI said at the time that he thought I had a mild case and once the bile has been dealt with should heal on it's own. I've been having severe body and joint aches, bouts of diarrhea, extreme fatigue and intense stomach pain. I went to see my GI yesterday and when I relayed those symptoms to him, he looked at me like I had two heads and although he was very gentle about it, told me that my case was so minor that he really wasn't even sure now if I had Crohn's and that Crohn's doesn't cause any of those symptoms. He said I should see my GP for that. Just to give me piece of mind, he ordered blood work (which I did right away) to check my "sed" rate - not sure if I spelled that right. Don't know those results yet. The body/joint aches have backed off enough that I've returned to work (after missing 2 days) but my stomach is really really hurting. I've not been able to eat much and only very bland things, which is fine if it helps, but doesn't seem to help. Any advice on what my GI said? Should I get a second opinion? If they go by his medical notes only, I would think they would say the same thing. I just want to feel better and if I don't really have Crohn's - GREAT! but I'm not sure I have alot of confidence in him now. When I had my colonoscopy - his office called me and said "you now have a new diagnosis of Crohns. Now he says - maybe not...Thanks for reading Oh, and I was diagnosed with IBS many many years ago. Have suffered with the D more than I care to admit. :stinks:
 
Yes, Whit. The regular doctor took me off of it because she never prescribed it before and was kind of nervous when my WBC dropped a bit. I finally went to my GI today and feel much better with his confidence and plan.
 
Laughngirl said:
Hello All, This is going to be a bit long and I apologize for that, but really need some advice from those who know. I was diagnosed about 4 months ago with Crohns, and have been on only the powder that helps with bile. My GI said at the time that he thought I had a mild case and once the bile has been dealt with should heal on it's own. I've been having severe body and joint aches, bouts of diarrhea, extreme fatigue and intense stomach pain. I went to see my GI yesterday and when I relayed those symptoms to him, he looked at me like I had two heads and although he was very gentle about it, told me that my case was so minor that he really wasn't even sure now if I had Crohn's and that Crohn's doesn't cause any of those symptoms. He said I should see my GP for that. Just to give me piece of mind, he ordered blood work (which I did right away) to check my "sed" rate - not sure if I spelled that right. Don't know those results yet. The body/joint aches have backed off enough that I've returned to work (after missing 2 days) but my stomach is really really hurting. I've not been able to eat much and only very bland things, which is fine if it helps, but doesn't seem to help. Any advice on what my GI said? Should I get a second opinion? If they go by his medical notes only, I would think they would say the same thing. I just want to feel better and if I don't really have Crohn's - GREAT! but I'm not sure I have alot of confidence in him now. When I had my colonoscopy - his office called me and said "you now have a new diagnosis of Crohns. Now he says - maybe not...Thanks for reading Oh, and I was diagnosed with IBS many many years ago. Have suffered with the D more than I care to admit. :stinks:
Click to expand...
 
Find another doctor. I went through the exact same thing. It took me over a year and the loss of 55 lbs before I finally went to another doctor. By that time things were totally out of control. I ended up in the hospital for a week.
 
Write2bheard, Thank you for that! I was beginning to think I was just being a big baby. Unfortunately, it seems there are more doctors out there that just want to dismiss women patients as "over-reacting." It's nice to know I'm not the only one who gets that sometimes. :dusty:
 
Not sure where you live Laughngirl. I live in Maryland and am treated at University of Maryland Digestive Health Center. It's a 2 hour drive, but well worth it. My doctor is going to be speaking on IBD at a local conference being held by CCFA. She is a gem. CCFA might be able to help you find a good GI in your area.
 
Thank you all for your input. I will definitely get a second opinion and will use the resources you have suggested to search for a new GI. :)
 
Laughngirl said:
Thank you all for your input. I will definitely get a second opinion and will use the resources you have suggested to search for a new GI. :)
Click to expand...


Just my experience but I was not pleased with my specialist consult at University of Maryland. I saw Dr. Flasar and I would recommend NOT seeing him.
 
Sorry you weren't happy there Lodgelady. I see Doctor Patil. She actually listens. Maybe it's just that she's a SHE. The other two GIs I saw always seemed to be somewhere else. She's also open to trying new things when the old approach isn't working.
 
Has anyone in our group been to the Mayo Clinic IBD department for treatment or examination? If so, I would like to read your comments about your experiences there. I am scheduled to go to the Mayo in Scottsdale, AZ on the 17th of this month.
Thanks,
Mike
 
Hi - I'm 65 and was just recently diagnosed this year. I am in a wheelchair and have recently gained a lot of weight due to inactivity, and I think the docs were just ignoring my symptoms. Anyhow, i am now seeing a doctor that I detest and am in the process of finding another one, but it"s not east. Right now I am on 40 mg of Prednisone and about to start on 50 mg of mercaptopurine, but when i saw the side effects it made me very afraid to take it. Are other my age taking it and what do you think? Or what are you taking and is it helping? New to this so anything would help. Feeling very scared and alone.
 
Hello Tootsie and welcome. I'm sorry I'm unable to advise on your meds.having not used any of them. I just wanted to say that we understand how scared and alone you feel,but there is always someone on here to chat to who are, or have been, in exactly the same position.It's tough being a crohnie, but with support from the forum you'll find you won't feel quite so alone. Best wishes and feel better soon.
 
Hi Mike58,

I have been to Mayo in Jacksonville, Florida, but it was not for IBD. I went to the pulmonologist, cardiologist. They were good, but the visit did not really solve my problems, because those are the only 2 departments I went to. I am telling you this, because I know that you have multiple illnesses, and you know how they can sometimes kind of overlap. I don't know how specific you referral is, but if it is possible, I would recommend checking with your doctor, to see if you could be seen by other specialists too, if needed, so that nothing is uncovered. (I hope this makes sense- I did not write it very well!)
 
Hey guys has anyone got any advice on mtx - am starting tomorrow and am a little nervous. Have to take 15 mg per week to start, have upped my Humira to 1 shot every week from 1 shot every 2 weeks, put me back on 20 mg of pred until everything starts to work, have to take 1 mg of folic acid everyday and am scheduled to have a MRI as they think that the pred has caused a problem with my hip. Have heard not so nice things about MTX and would like to know what to avoid or what to take it with to alleviate some of the worse side effects from those in the know. This is my Hail Mary Pass as I am allergic to Remicade and Imuran and the Humira isn't working for me on its own so I'm hoping that it's not going to be to bad. Any advice would be appreciated. Thanks
 
Grumpy1 said:
Hey guys has anyone got any advice on mtx - am starting tomorrow and am a little nervous. Have to take 15 mg per week to start, have upped my Humira to 1 shot every week from 1 shot every 2 weeks, put me back on 20 mg of pred until everything starts to work, have to take 1 mg of folic acid everyday and am scheduled to have a MRI as they think that the pred has caused a problem with my hip. Have heard not so nice things about MTX and would like to know what to avoid or what to take it with to alleviate some of the worse side effects from those in the know. This is my Hail Mary Pass as I am allergic to Remicade and Imuran and the Humira isn't working for me on its own so I'm hoping that it's not going to be to bad. Any advice would be appreciated. Thanks
Click to expand...

No experience to share,but I am sending lots of support your way.
 
Grumpy I take 10ml once a week along with Remicade every 5 weeks. Main side effects are fatigue and tendon pain, which lasts a day or two. I'm increasing the folic acid to see if that helps. Good luck. Hope it helps.
 
Okay guys, Methotrexate is going not too bad except my hair is falling out and the day I take it I'm a little nauseated. I find that I feel "full" all the time now not sure what that is. The hair thing is annoying - I rather like my hair where it is thank you very much. Not sure what to do about that.
 
Grumpy1,
I take an anti nausea pill two hours before I give myself the shot and that helps keep the nausea at bay. They are prescription, but worth it. I am mostly bald so the hair thing didn't matter. Tiredness and occasional disorientation are some of the side effects of MTX for me. Good luck.
Whit
 
Doyourdream i believe the medical research got it wrong, i think crohns is caused by stress, i believe you and others like me when are put under too much stress it causes the disease, The people i spoke too got the disease when they were put under too much stress causing changes in their body to take place. i think the medical community will come to this realization, Because of this i tell my daughter to stay away from real stressful jobs, I believe your ibs due to the stress was under turned into crohns.My daughter has ibs and that can turn into crohns if she is put under too much stress.
gtc45
 
gtc45
Definitely part of it though I think from what I've read environmental issues and genetic predisposition may play a part
Whit
 
I just read all posts and enjoyed them. It appears all have had diarrhea at some point. This is my story:
Diagnosed with Crohn's 4 years ago with routine colonoscopy (age 51 at time). I had NO symptoms and my doctor was surprised I had none. I didn't want to be treated since I had no symptoms except for inflamed Ileum. Four years later (2014) I began to have a pressure feeling on my right side near hip area that radiated to my back. Eventually after testing, I developed severe pain near ileum. Never had diarrhea, but had side, abdominal pains, occasional back pain and slight constipation. Started prednisone and did well but was taken off -not a good long term medication. Started Humira in July and was told that it was the golden drug for Crohn's. Symptoms have returned - not as severe and I was on Azathioprine for 1 week (stopped 2 days ago because of side effects). My last colonoscopy (last month) showed 80% scarring and 20% inflammation so apparently Humira is not so golden! I have been having pain near and under breast. Lung X-ray and other tests showed nothing. Has anyone had breast pain from Crohn's? I also have been having joint pain in my hands and my ilieum and side pains are back. Going to call new doctor next week for second opinion. Getting another mammogram in early January to rule out breast cancer.
 
orangesunflower
I think any of the powerful drugs we have to take throw up a number of side effects that doctors don't think are relevant. I get all sorts of weird pains, itching, headaches, joint pain and general malaise from the methotrexate I inject weekly. I am lowering my weekly dose on Dr.'s orders and now for the first time have incredible nausea which my doc says shouldn't be happening.
You have to almost be your own diagnostician.
Good luck
Whit
 
Happy New Year! I am new to this support group. I was diagnosed earlier this year @ Age 59. Still trying to navigate the new diagnosis which has been quite the struggle.

I was given Entocort for a few months then started Pentasa while I was weaning off the Entocort. Unfortunately, I had a horrible reaction to the Pentasa which I suspect was a Salicylate intolerance. Did my research after my bad experience and now wondering if I am reacting to foods with salicylates in them. Anyone else have issues like this after taking Pentasa? Currently not taking any meds, just all natural vitamins and vit. D3

Been doing the auto immune version of the Paleo diet for about 4 months now, seems to be working well, just seem to be having issues with the already limited food I can eat on the Paleo.

Thanks for your support!
 
Welcome RNGirl...and Happy 2015 to everyone. I wish us all an abundance of luck, and good intuition for ourselves. And that we treat ourselves kindly, and we are careful in how we care for our bodies. We are all quite precious...

Questioning how one gets what we have ... that can go on forever, no one knows. They do know it can be hereditary, but that does not mean you will get it. No one in my family for generations has had it, or has it. I KNOW I got it from antibiotics, and even at that, the doctors know so little. So...Who knows -- So far I know what "doesn't" work for me, lol.

Have a great New Years Day!!
 
RNGIRL
I had the horrible Pentasa reaction but after I got off it I didn't have food allergies that I am aware of. I ended up in the emergency room for the second time since I was off meds entirely. This led me to find a new GI and I am now on methotrexate and though this is a course of chemotherapy it is working well. I made it through 2014 without a hospital visit.
Happy New Year to you and I hope this year will be better than last.
Whit
 
RNgirl, when I started Pentasa I had terrible joint pain for 4 months. It eventually subsided. Do you think if you kept taking the Pentasa your reactions might go away? How severe was the reaction? I am taking Enteragam along with Pentasa. The addition of Enteragam is what finally got me feeling " normal" although I watch what I eat.
 
@Maggiesfour.....I had to keep telling my GI how aweful I feel. The courses of Pred and Entocort was just not cutting it. I pleaded for additional meds and now on the Pentasa and Enteragam am finally getting some relief. My only problem right now is I still can't gain any weight. If I get another flare I am going to strongly demand a pill cam. No one is a better advocate for our health than ourselves!
 
@Whit: I made it through 2014 without a hospital visit too! Yeah for us! Between 2012/13 - 11 mos total hospitalized, and in 6 weeks time: back surgery, appendectomy and my gall bladder removed. I am still trying to put the pieces back together.

@LodgeLady: You need to be your own advocate, and it seems you are doing quite well. I couldn't gain weight at all for 18 mos, then all of a sudden I gained 40 pounds. As soon as the C-diff cleared - bam!! Prednisone weight gain - crazy! Are you able to changed doctors? I kept firing them and finding new ones. Very scary and frustrating. For the first few months, I kept thinking, how is it possible I know more than they do - then it hit me. They don't have time to research, and query on boards like we can. Even my current GI now, who I adore, and he is like part of our family, he is so busy and overwhelmed - almost all the time. He was and is very open-minded with me, when he saw that my suggestions worked in certain areas. Initially, I hounded him, and we actually had an argument in the hospital. He could not believe the amount of info I had on hand. I told him, I am living in a hospital, therefore my computer and I are working OT - to get me well. I read so often when I first got sick - "we know our bodies the best - be your own advocate." I also realized quickly that many people do not research, and just take the meds given to them, and if it works it works, if not, they suffer. So - I pray for them.

Everyone - have a lovely day with your families, friends, pets, or just yourselves. Its a New Year - Let's make this one count!
 

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