how much better am I supposed to get?

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map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 3/25/2008 3:23 PM (GMT -7)   
Before I got the crohn's, I used to only go #2 a couple times a week.  When I am flaring I go maybe 6 times a day and it's all liquid and it's exhausting because I don't want to eat anymore on top of that.  When I am on the steroids I go once a day, unless the dosage is really high and then I can't go without laxatives.  That's the range of well and unwell I experience.  Every time I get off the steroids I go back to having to go at least 4 times a day and then eventually it makes me so irritated I have to run to the bathroom within an hour of eating anything and I get super tired and malnourished.  I literally get so tired I need a nap from walking to my office from the parking garage across the street, and I can barely lift a laptop because it feels like my arms are going to give out.  It doesn't seem feasible to live that way but it's not like I'm bleeding everywhere or having strictures or blockages or anything severe.
 
Am I expecting too much to not run to the bathroom 6 times a day?  To not go liquid?  To not be tired and weak from going so often?  What level of sickness should I be ok with?  It seems I only do well on steroids, I haven't tried Imuran/6MP/Humira yet but that's what they're going to suggest if I complain about not feeling well again now that I'm yet again off the steroids.  Is it worth it to use those "harsher" medicines just so I can feel relatively normal?  I see a lot of you are much sicker than I am and I wonder if I am a sissy for not being able to stand what happens when I am off the steroids.  I don't know what to do, any advice or suggestions or opinions are helpful.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/25/2008 3:40 PM (GMT -7)   
All of us have our own tolerances for what is ok and what is too much. For me, that level changes the longer I have the disease. It seems like we get adjusted slowly to less quality of life and therefore handle more. But, every person's threshold is equally important. You should strive to be as well as you can possibly be while feeling comfortable with the meds you are taking.

Most all of the meds have some serious side effects, including long-term use of steroids. Each time I start a new med I am afraid. (Just started Tysabri and tying to get over feeling like a walking time bomb.) But, as I get on the med, the ones that help, I start to feel like that drug is my friend. I hate being sick, no matter how accustomed to it and how it's integrated itself into my life. I strive for as close to 100% as possible.

Don't get down on yourself by comparing to others. It's ok to want to be better!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 3/25/2008 3:49 PM (GMT -7)   
I guess it just depends on what you are willing to take. I am not willing to take being tired and fatigued so much that all I do is go to work, come home and sleep, and work again with no family time, no fun time. So I take Imuran 150mg. I know there is a risk of alot of side effects, some very serious, but I'll take the risk. A very small chance of something bad versus a 99% chance of feeling awful all the time? For me, life is too short to not enjoy it if I can.
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 33f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07. Tapered off entocort 1/08 and feeling the effects with fatigue, pain, D.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 3/25/2008 4:31 PM (GMT -7)   
I'm so glad you asked this question! I've been wanting to know the same thing as I've been feeling the exact same way. I look forward to reading more responses.
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/25/2008 5:08 PM (GMT -7)   
I am always amazed that there are crohnies who actually feel better and even normal taking any meds. I have tried so many different meds and even surgery and my crohns came right back with a vengeance.
 
I have NEVER been well. Not with meds, not with surgery. I WISH I could feel better with the meds. Even with prednisone, I still have diarrhea, but at least I don't have as much pain.
 
What's helped me the most is the maker's diet. I follow it strictly sometimes, then not so strictly at other times. I'm still not in remission, but at least something is helping with the 30 times a day diarrhea!!!
 
Now if I could just do something (aside from surgery) about all the obstructions I get...

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/25/2008 8:34 PM (GMT -7)   
I think we all understand your frustration to a point, map lady. I don't know if it's my personality, or my age, or my inexperience, but I will not settle for much less than 100%. I've had crohn's for about 3 years, and I've been on Remicade for most of that time. Prior to the remicade, I was at about the lowest of the low (40lbs underweight, joint pain so bad I had to be in a wheel chair, 20+ bms a day...fevers... the whole nine yards - for a year). I tried several things prior to the remicade, but none of them worked for me. Most of the other meds, like steroids, actually did very bad things for me. I'm aware that Remicade is kind of the top of the food chain when it comes to crohnie drugs, but I try not to spend too much time worrying about what I'll do if it stops working, and I remind myself to just enjoy life while it IS working. I guess what I'm saying is that I know how bad it can be, and how good it can be... and I strive and complain to my docs and demand solutions until I'm closer to the good side of the spectrum. Life is too short for me to do otherwise, in my opinion. Steroids are not a long-term solution for most people. Would your doc let you start something else BEFORE you stopped the steroids? Maybe you could sort of increase the new drug as you decrease the steroids, instead of just wiping one out of your system and starting another.

Best of luck to you, whatever you decide. You deserve to feel good. That's what you pay your doctors for, darn it.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Goldi76
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/26/2008 6:05 AM (GMT -7)   
I have had diagnosed Crohn's for just over 3 years, but now know that I have had the pains sporadically for over a decade.  When I was diagnosed I was also put onto steroids as a short term measure to get me out of the flare up.  My first 12 months were horrendous and I did nothing, I wasn't even able to work for several months.  Now I am able to work and have the energy to have a social life, I still can't go out partying 5 nights a week but as long as I am sensible I can have a life.  My Dr has put me on a low dose of an anti-inflammatory along with an immuno suppressant.  He did this whilst lowering my steroids.  Although I wasn't happy at first to go onto the immuno suppressant I have a fantastic Dr who I trust and the best advice he has given me is to learn to listen to my body & understand how the disease behaves in me.  As we all know this disease is so different in each of us there is no-one who knows exactly what we each go through.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/26/2008 6:08 AM (GMT -7)   
Welcome to HW
I know you will really come to see and know the ppl here care about you and are here to help you with any questions they can
The support is awesome and so are the ppl on this forum
Hoping to see you post more and
STAY with us ..again...WELCOME

I am waiting to see about remicade right now ...I have the D so many times a day usually from 3 am til 5 am then again most of afternoon / am off the steroids for now ........I try to make sure I eat I have been down to 88 lbs and I will never go there again...OMG I was so sick .....I wish all well .....

 

LYN


  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 

Post Edited (Howlyncat) : 3/26/2008 7:12:43 AM (GMT-6)


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/26/2008 6:47 AM (GMT -7)   
map lady, I agree with everyone else who said it is a personal decision on how sick you will settle for.  I am one of those who will not settle or just accept being very sick, although I do realize that there are times that my body will not cooperate with what I want or am trying to do.  I would rather take more medications, even some investigational medications that may have unknown side effects down the road
and have a happier, less painful life for a while.  It has to be a personal decision.  My husband is opposite of me...he has a bad back but just accepts that he will always be miserable (and we are only 27 yrs old!) and doesn't do what he can to help it.  I am not content with myself until I know I've done what I can to help myself, which includes medicines, doctors, exercising, diet, etc.  It may take a little time, but you will decide what you can/can't live with.  Good luck.   
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 3/26/2008 8:24 AM (GMT -7)   
I've been thinking the same thing too... I know I'm not one of the sickest people here - far from it! I haven't had an official diagnosis for very long and I only have one major flare under my belt but I'm getting fed up with medications, being sick and worrying about what to eat.
I sort of feel like I dealt with everything just fine before - without medications etc... And I wish I could just go back to how that was. The side effects of my current medications are so annoying and it doesn't seem like there are any other medications that will be any different :(

I hate being such a downer but I thought I'd post to let you know that there are other people feeling the same way.

All the best.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: 4g Pentasa (2 pills 4 times per day)
9mg Budesonide (one capsule 3 times per day for the next 6 weeks)

Pre 22/02/08: 2.4g Asacol (discontinued due to Crohn's Diagnosis)


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 3/26/2008 1:45 PM (GMT -7)   
I really just want to be able to function, i.e. walk around and read e-mails and use a laptop and when I'm not on the steroids I literally get so sick I have a hard time doing that.  It gets so bad I can barely manage to drag myself through an 8 hour shift, I'm ready to collapse after about 5-6 hours of the most boring and physically un-demanding day at work.  Not to mention I was so fatigued by the time I went home that I would literally just suddenly be farther down the road and not know how I got there and somehow had not hit any cars or anything, and have that happen many many times on my 15 minute trip home which is scary.  I'd be lucky if I got to do laundry or watch tv or take a shower since I was pretty much sleeping every minute I wasn't at work.  I didn't think any of that was good and couldn't see how I could stay that way but I was like man, why do I get this sick and tired and useless when I'm not really having that bad of symptoms compared to other people and it usually doesn't even show up as elevated inflammation levels on a blood test.  I thought maybe I need to just learn to put up with it but you guys are right, everyone works differently so if I get that messed up from 6x per day every day for a few weeks, I shouldn't be ashamed and shouldn't feel bad for wanting to feel better.
 
The other thing that concerned me was that it seems like all the other drugs to try from here on get "used up" where they are not effective anymore after a while and you have to switch to something else.  I was kind of afraid to go use those if I wasn't horrendously sick (bleeding strictured etc) in case I end up needing them really badly down the road.  I am already afraid and feel like I do not have many options left because I can't have Remicade to begin with (mouse allergies) and as far as I can tell it's just Imuran/6MP, Cyclosporine, Humira, Tysabri, and then hoping to get into a clinical trial if I use all those up.  Is that correct?  If there are many more immunosuppressant things to try that would cheer me up a lot!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/26/2008 2:18 PM (GMT -7)   

I just wanted to say you are not alone.  I have gone through periods of time when I would just wait to get home from the bus stop with my kids so that I could get into my PJ's.  When you find the right combo of meds, things should get better.  And keep in mind that new drugs are coming all the time, so if you "use up" all the current meds, you don't know what might be available at that point. I look at these meds and their long term side effects as a neccessary evil.  I am not guaranteed tomorrow much less 20 years from now, so if I have to take a medicine that might cause a side effect 15 years from now in order to have a good day today, thats a trade off I'm willing to take.

Have you had your blood work checked?  You might have some anemia issues or malabsorbtion going on.

But, I will tell you one med that has worked wonders for my constant D.  Xifaxan. It is an antibiotic used for travelers D, but it is used off label for CD.  I've been using it for almost 2 years.  I've gone from 15 - 20 trips to the bathroom a day to 4 - 6.  For me thats manageable. It has also allowed me to lower my prednisone dosage.  I've been on prednisone for most of the last 14 years and could never get below 15mg.  I am currently at 4mg and tapering 1mg every 6 weeks or so.  I have to go really slowly, or the withdrawly is horrible, but I'll take whatever I can get.


Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/26/2008 7:55 PM (GMT -7)   
Map Lady- I share your frustration. I am however moderate to severe. I do well most days but I can't tolerate more than a 3 day stent of watery D 7-8 times a day and/or a 3-4 day 24/7 fever. If fact the fever is an issue today and I'll be calling the Dr. in the morning to get a sed rate and white count on me. There comes a point when you do everything you know to do and it still doesn't help. I may be stepping out of bounds a little here but do you take anything for aniexty/depression? I found myself sleeping a whole lot and looking back on it now it wasn't just the fatigue. I was depressed and didn't recognize it for what it was doing to me physically. Both depression/stress can manifest it self in ways you wouldn't even think of. Also, have you had your B-12 checked lately, do you drink plenty of water during these flares and finally do you take a good multivitamin? These are all things to consider to help you through the fatigue, since in your post that seems to be what is frustrating you the most. My GI has chosen the "top down" approach to my therapy so I can't attest to saving the "big guns" such as the biologics till later. But I will tell you I haven't had any fissures/fistulas ever....so there is something to be thankful for!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 3/27/2008 9:34 AM (GMT -7)   

Broomhilda, I hope the fever turns out to be nothing serious.  Feel better soon!

Zanne, does the Xifaxan cause any unpleasant things like abdominal cramps or blurry vision and dizziness?  I have hycosciamine or however you spell it but I feel kinda dizzy and can barely read anything no matter what for about 1-2 hours whenever I take it, so I only use it when my symptoms are really killing me.  It's better than horrible abdominal cramps and pain like some other anti-D medicines I've tried but if that Xifaxan stuff has side effects that aren't as strong I'd totally love to try it :D

As far as whether I'm tired from stress/depression, no that's not it.  I do get that sometimes but as soon as I get away from whoever is bothering me and upsetting me (I live alone) I feel better or need to sleep and then feel better afterwards.  That's just a "man I could use a nap" or "I don't feel like doing anything" kind of tiredness, what I get from going to the bathroom so often is literally a level of tiredness where I am nodding off no matter what and sometimes it feels like I may have fainted for a second or so, I just suddenly lose all muscle control and my vision blacks out and then I find myself about to have a close encounter with the floor and manage to kinda catch myself and not hit the tile.  I will literally feel just fine until I go #2 the first time for the day and then immediately afterwards, like before I can get out of the bathroom, I feel like I'm going to either pass out or fall down and sleep and the more times I have to go #2 after that, the worse it gets.  Whenever I go #2 and it is not a violent emptying of my intestinal contents, I do not get tired or feel faint at all.  I guess I just have something weird wrong with me in that way.

I do not know what my B12 levels are, I would assume my GI checked that last time I was having problems that required prednisone about 4-5 weeks ago.  He said my blood tests came back "ok" but I do not know if it included a B12 test.  I keep meaning to ask if they have done that lately but I have had a hard time remembering things and now that I finally called it's the GI's day off...LOL.  Here's me being weird again though, I found that when I purposely keep myself starving and dehydrated I actually feel much better (not that I will feel awesome in that condition, obviously) than if I drink plenty of water, since it makes me run to the bathroom, and much better than if I eat anything, since off the prednisone I am not able to find anything that takes more than an hour to make my insides erupt.  The blandest safest stuff takes an hour to erupt, ordinary stuff can take as little as 10 minutes :(  The only reason I feel ok today is because I haven't eaten since 2pm yesterday and all I've had is about 10oz of water since then too.

So...yeah, I can't seem to do anything right to make my insides not angry and them being angry just kills my energy right away and gets worse the longer it continues.  The other reason I called the doctor was to ask for a medication change to the immunosuppressant type stuff in hopes that I can feel better.  I don't even care about the side effects since anything that could make me feel worse than I do without prednisone is very unlikely to happen, if one of those rare awful things happened at least I tried, I just hope one of them works and I do not "use them up" too quickly and not have anything left to use.


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 3/27/2008 1:02 PM (GMT -7)   
Map Lady, One thing you mentioned is that you don't have many symptoms. My opinion that fatique is a symptom. One of my worst. Even at my sickest I would only have bm's 3-5 times a day. Never had bleeding, never lost weight. Just several bm's a day and constant fatigue. My doctor and I both thought the diahrrea was caused from IBS. I thought I was just a lazy slug. I then developed a fistula to my bladder and had to have emergency resection. That is when it was discovered I had Crohn's. 1½ years later, I still have bouts of diahrrea, still have days when I just crash but on the most part I realized that fatigue can be debilitating. Don't consider fatigue as a not symptom. It is. That's usually how I know when something is brewing. That, and the joint pains.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/27/2008 1:47 PM (GMT -7)   

MapLady,

Xifaxan hasn't caused me any side effects that I know of.  It is an antibiotic used short term for travelers D, but off label for CD.  I had to get my insurance to approve it.  I think it is absorbed in the intestines, kind of like Entocort.  So the side effects would be minimized.  It isn't the same as the antispasmodics like Levsin and Bentyl (hycosymine). It may not be usefull for you, but it might be worth a conversation with you doctor or at least some research on your part.  It really has been great for me, and I don't ever want to live without it.

3 things I want to add though.  Don't assume your doctor is checking your B12 level.  Please follow up on this.  I know for me at least it wasn't part of my Doctors normal CBC and I had to keep asking to have it checked.  Also, it isn't good to go for long periods of time with no nutrition, or fluid for that matter.  Your body needs fuel to heal itself.  The more run down you get the harder it will be to come back up.  And lastly, I'm not a big supplement person, but for some reason a few years ago I started taking B6.  Not a combo B, but just B6.  200 mg, 2X a day.  It took about a month, but I did notice that I didn't NEED a nap every day.  I could still take a nap, but I didn't NEED it.

Please take care and keep us posted


Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/27/2008 3:34 PM (GMT -7)   
Just remember that untreated disease can cause severe side-effects: narrowing, scarring, malnutrition, as well as severe psychological, emotional and social problems. Steroids aren't harmless either.

It might be a mistake to feel that you are taking the "safer" option by leaving your disease untreated and avoiding the "harsher" medicines. What does your doctor think about it?

I.
Co-Moderator Crohn's Forum.


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 3/28/2008 3:24 PM (GMT -7)   
Thanks Zanne about the Xifaxan, I'm probably not going to try it though because it's an antibiotic.  Before you posted about how it hasn't produced many side effects, I went and looked up the drug at mayo clinic's website and the other search result it provided was like psuedomembranous colitis or something, basically c.diff from being on antibiotics and the c.diff toxins giving you colitis.  It said sometimes Xifaxan is used to treat that but other times the antibiotic can cause that.  I think I'll pass just in case I ever need that antibiotic for E.coli or c.diff since those are difficult to treat.
 
Sorry Ivy, I can be kind of uh...hard to understand?  I can't think of the word.  I certainly don't want to leave my disease untreated but I was wondering if my relatively mild-seeming symptoms, aside from the debilitating fatigue, warranted using the big guns, or if I should just deal with it or perhaps hope to find a way to stop the violent intestine eruptions with drugs that aren't as crucial to have available for treating severe crohn's in case I ever suddenly get really bad.  Like I said, the side effects do not bother me that much for the immune suppressors, I just worry about using them up and running out of medications that work.  I am more afraid of the dumb prednisone since it's guaranteed to screw you up real bad and the only benefit I get from it is that I am able to function, lots of other things hurt instead and I worry about bone damage and eye damage and all that jazz, since all those things hurt and malfunction when on prednisone.
 
Today I noticed that I seem relatively ok with eating (bread and stuff stays in for 5+ hours) as long as I do not provide much water for stuff to mix with (water makes things gurgle and erupt within 1-2 hours) so...maybe I should try more anti-diarrhea medicines?  I have tried imodium (ouch) and the hycosymine (can't see) but if there's anything I can ask the doctor about that I haven't tried, that might be a good start, and would hopefully help right away as opposed to weeks of waiting for immune treatments to work.  If anyone has any anti-diarrhea medications they recommend that are not those two medicines, and not a steroid or antibiotic, that would be super.  Plus, my doctor doesn't want to give me the immunosuppressant stuff except as a last resort so I'm sure he'd give me an anti-diarrhea medicine right away and be glad to have me try it.
 
I hope I have some weird problem with absorbing water as opposed to having a crohn's attack somewhere inside that they can't seem to find unless I am bleeding and ulcerated.  My knees have been hurting badly lately, like they are full of water that gets squished and presses on them, so my crohn's is probably being bad but I am crossing my fingers that it's something else causing trouble at the moment.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/28/2008 4:28 PM (GMT -7)   
I'm not trying to be harsh, I DO mean this in a kind way, But You say the only benefit to taking Prednisone is that you can function. So you don't want to take it, and you don't want to take more aggressive medicine in case you get worse. You aren't functioning! How much worse are you waiting to get. Do you want to live for the next 10, 15, 20 years just waiting to get worse so that you can take more aggressive medicines and start functioning? At what point are you going to try to take back your life from this DD? NONE of us is guaranteed a healthy tomorrow much less a healthy 20 years from now, all we have is today, we need to do whatever we can to enjoy it and make the most out of it. If this disease has caused you to stop functioning to the point that you can't take in fluids, you are really at the point where you NEED to be discussing more aggressive measures, not just prednisone.

OK, I'm stepping off my soap box now and I hope I didn't offend you, I just really don't like to see Crohn's disease win!
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 3/28/2008 5:47 PM (GMT -7)   

Gah, that's not what I meant either.  I hate prednisone because it is guaranteed to screw you up real bad.  It makes me have pain in my bones and it screws up my eyes.  God knows what it would do if I had to stay on it longer.  The only benefit it has is that it makes me stop having to go all the time, which makes me able to function even though I feel pretty bad from the predisone instead.  It is a bad bad medicine and I do not want to take it forever.  At all, even, but it's the only thing that helps so far.

I have only had crohn's for 6 months.  I spent a whole month bleeding everywhere and barely being alive before I got any medication.  They actually thought I had some sort of cancer since it developed so badly so suddenly and did not go away.  Once they found it was crohn's I was on steroids for 2 months and have been on 4xLialda every day since.  Went a month without steroids.  Went on them another month, off them again for nearly 2 weeks now.  I have spent a lot of time on steroids since this started and that has been the only thing that makes my insides stay ok.

I do not know if my problem is with absorbing water but I noticed drinking water seems to make it worse.  I do not know if that is crohn's or not since after I initially went on medication they haven't been able to see any sign of crohn's activity any time I am having all these bathroom trips and fatigue.  I know crohn's never really goes away but I don't know why I am having all the bathroom trips and severe fatigue if all the crohn's testing is saying my crohn's isn't causing inflammation and stuff.  Sure, I feel miserable, but how do I know this isn't what I'm supposed to be like all the time from now on and then be worse when the crohn's is actually being active?  Aren't I technically in remission if all the tests are negative and scopes and biopsies are normal?  This is the main thing I do not understand. confused   confused   confused

I do want to use an immunosuppressant.  I know they stop working after a while because they either stop being effective or hurt you more than they help you, and you can no longer use the drug after that and have to switch to another.  As far as I know there are only 4 immunosuppressants I can try since I can't use Remicade.  As last I talked with him my doctor will not put me on an immunosuppressant unless my crohn's shows up on some sort of test as being active again.  He's not picky.  Any test will do.  He tried a whole bunch of different tests because he wanted to find the answer but all the tests of every type were normal.  It just has not shown up on any test other than when I first developed the disease.  I can't blame him for wanting confirmation of crohn's activity returning, why end up with one or more important drugs in rejection when you can't even find anything wrong with your patient and those drugs may be needed more critically later on.  Does that make sense?  If there is anything that demonstrates that people whose crohn's won't show up on tests can have their symptoms improve on immunosuppressants, please point me at it and when I show the doctor it I should be able to try the immunosuppressants to see if they help.

Anyways I should hear back from them maybe tomorrow or on monday about whether or not I ever got B12 testing.  My GI seems like he is pretty knowledgeable about symptoms and side effects so I would be surprised if they say no I was not B12 tested last month.  He actually cares about making his patients feel better so I can easily get a B12 test if I need it and maybe he'll have ideas about what we can try to stop all the bathroom eruptions.  I know I am not out of options I just do not know what is making my insides so mad right now if my crohn's is supposedly taking a nap or whatever. confused   I am sure I will have more tests in general to go in for.  Hopefully all this business is not the new way my intestines will operate when I am in remission.  Really, really hope not.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/28/2008 7:52 PM (GMT -7)   
OK, lets start over. IF you are having all of these symptoms, then you are NOT in remission, no matter what the tests say. OR, there is something else going on. Either way, something is not right and you need to demand that your doctor continue testing or trying different combinations of drugs to find something that helps. If he is not agreeable to that, then you might want to consider a second opinion. NONE of us should accept misery as our new "normal" just because we have been handed a diagnosis of an illness. For the most part, we should be able to get to a point where day to day life is pleasurable. We shouldn't just be existing.

What about Entocort, it doesn't have all the nasty side effects of prednisone. What do your blood tests say? Do they indicate something going on? What type of testing have you had done? Have you had a camera pill? The intestine can only be completely visualized by the camera pill, so there could be active disease that isn't seen by endoscopy or colonoscopy. Even SBFT can't see everything. A doctor needs to rely on the patient's sypmtoms as well as the test results. Could you have some other underlying problem that isn't being addressed? Just please don't give up and accept misery. I have had this disease for most of my life and my Mom was diagnosed when I was a baby, so I really have lived with it all of my life. I do know that you can have good YEARS, not just good days, you just need to push for the right answers and the right drugs.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Goldi76
New Member


Date Joined Mar 2008
Total Posts : 7
   Posted 3/31/2008 4:53 AM (GMT -7)   

Hi Map Lady

It took me at least 12 months to come to accept this disease and get used to taking the medication.  My Dr started me on steroids to give my system a kick start whilst the long term anti-inflammatories he gave me started to kick in.  He started the anti-inflammatories at huge doses which have now gradually been reduced and I now take two pills a day, which for my Dr is the minimum he likes people to take.

Before I completely stopped the steroids I was started on an immuno suppressant which is also long term and can do major organ damage if not checked regularly (weekly upon first use).  They have now developed a test to see if your body will react or not before they give you the drug.

I am in the UK and am not sure if the drug names are the same but my anti-inflammatory is called Mesalazine and the immuno-suppressant is Azathioprine, I think the test is called a TPMT test!

My view is that I take these drugs every day, which still really hacks me off, but I can get out of bed in the morning and the aching joints are heaps better.  I also take multi-vitamins as they could see my system was seriously lacking nutrients from my blood tests, that way even when I don't eat properly my system is getting something.  I did also find drinking water didn't do me any good, I used to drink cola by the bucket load.  This is now back to normal & thankfully I still have my teeth.

 

 


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 3/31/2008 9:43 AM (GMT -7)   
I too had the TPMT test. I wonder how many people are actually given this test before they are prescribed certain drugs? I would not even have known I was tested for it if I had not got a copy of my medical records.

55 yr. old F dx. CD 07/07
Currently on no medication

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