Id love to have someone listen....

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id love to have someone listen....

okay soo here it goes...
(this could get long)
For about 3 years now i had horrible abdominal pains that would make me cry, but my doctor just put me on stupid diets and never ONCE did a simple blood test or even suggested it. Eventually the pains would leave for about half a year, but come back and I was learning to live with it. But two summers ago it came back worse than ever and with a different feeling.
My height was going up and my weight was going down and I was painfully skinny, but physically couldnt eat more than a few bites here and there. My loved ones started getting suspicious and I began geting into fights with my family members because they thought I was not eating because i was anorexic or trying to get attention. It hurt so bad to know they wernt taking htis seriously. Well two summers ago i was camping with my family in the mountains. We hiked 4 miles in with 25 punds on my back (that was over a fourth of my body weight) the pain had been back for a few weeks but magicall went away when we went on this trip. For each day i was fine until the last day/night. There was a bear nosing around the campsight so obviously i didnt want to go outside, but i really had to pee. So i just held it till morning. When i got up i went pee and the tightness sort of went away but was still there. After hiking out it came back and started to get more and more intense. For the 10 hour car ride back home i layed in the back seat praying to God to make it go away and crying. When i got home i went straight to bed and pretty much live dthere till Saturday. On saturday i woke up and knew something wasnt right. All day i didnt eat or drink anything because it hurt too bad. I tried EVERYTHING to relieve the pain and by the afternoon i resorted to sitting on the floor and crying softly, trying to remain strong. Finally I went in to tell my parents I didnt feel good and when they took my temperature they begged to let them take me to the ER, but i was afraid theyd say nothing was wrong so i didnt let them. About an hour later when i felt like death would be better than this I caved. Every bump in the road felt like a knife to my stomach and by the time i got there i was ghostly pale and in sever pain. They let mr right back and immediatly put an IV in. they dug around in my vain with me screaming for about 5 minutes until she finally got it in. And then i got my first run in with morphine, and realized just how sensetive i was to those meds..... Then the tested started. ultra sounds, and cat scans. Enemas. fun. All first for me. They ruled out appendecitis becuase they could barely find my appendix, but then thought about Crohn's. I was transfered to the University of Iowa and they wouldnt let me eat or drink because of the possibility of surgery. The next day i still knew nothing. they found out i had an abces and that it was very severe. They decided to put a drain in and after drinking extra contrast and FREAKING out right before it was going to be put in, they canceled it. And still told us nothing. I spent 6 days in bed, eating and drinking nothing. and puking when they finally let me eat something. They released me with a picc line and for 2 weeks i was fine. when i went in for a colonoscopy and endoscopy they found out just how severe it was and immediatly scheduled me for surgery. I was told id have a bikini line scar but when i woke up it was a huge scar along the curve of my belly. This is when the fun starts (again so sorry this is so long, i just need to tell my story). So the epideral button cap thing was on my spine, so the doctor moved it but pulled it out too far so the medicine was pooling up on my skin. obviously an hour out of surgery, this hurt so i asked for more meds. i was using the self push morphone thing like crazy and it was making me sooo naeusos. so they put me on 2 different naeusea meds. one being the one that starts with C. Sorry i dont remember it! it did nothing to control the nausea so i was puking hours after surgery and you can imagine just how bad that hurt, and then it hurt SOOOO bad internally because i had so little meds (i was trying not to use the morphine so much to combat the nausea). well walking was imossible and by the next night i was beginning to feel stiff. No one believed me and told me to relax. By the middl eof the night my back and nexk was ached and stiff. I got up to go to the bathroom and on my way back my head flopped back and my arms came up to look like a dinosaur and the scaries thing is i had no idea what was happening. After an entire night of my mom holding me (she was so uncomfortable but i physically COULD NOT MOVE) the doctor came in and knew right away to give me benadryl. No nurse knew what to do and just let me suffer like that. I finally got out and am now doing Okay i think. Its been like a year and a half now and i still have completly watery stools (never gone back to normal after surgery) i take azothioprine and allauprinol every day but often forget> i eat a normal diet but the bathroom thing really gives me a hard time. i take forever and its hurts so much just to try and get through the day. those of you who hav this know what im going through. So do you have any tips or tricks for me? I could really use it. Thanks for reading this... i know its really long... Thanks so much!
 
Hi TS, welcome!! Our intro to crohns was much less dramatic, but there's a mother on here whose daughter had a similar intro. Hi Dusty!! She'll be here soon if I'm not too slow!! Good luck!!
 
Hi thissucks and :welcome:

Hi Dex, :bigwave:, Dexky is right, Roo did indeed have a similar journey to you and was diagnosed on the operating table. She had a Right Hemicolectomy and has been left short bowl syndrome. The scar situation is exactly the same, going in for an appendectomy and coming out with a wound that went right across her abdomen. Have you tried Questran? I know it works for Roo but she finds it too unpalatable so has chosen to plan her eating around her day. Roo is 4 years down the track from surgery and away at uni now but I feel it has taken this long for her to really be in tune with her body because I see her eat now at times she never would in the past. Are you on other medications like B12 and Folic Acid? Allopurinol is an interesting choice of medication, I understand the reasoning behind you taking but I'm not sure I have seen anyone else your age prescribed it.

I'm not surprised you were in so much pain post op, what with the meds and the vomiting, did you have a naso-gastric tube in?? So you are still in pain?? If so where and what it is like??

Sorry for all the questions. :eek: Roo has been in remission since her surgery and does not have ongoing pain. Hope to hear from you soon.

Dusty, :hug:
 
no, i really love all the questions. i havent talked about it to anyone, so i dont know if what is happening to me is normal. i did have a tube for that in. im not sure if im still in pain or not... i havent had my period because of how much i weigh (5'6'' and 80 pounds after surgery) so im not sure if its cramping from that, the need to go to the bathroom or if its the crohns. my pain was always around the appendix and horrible. now its moved more towards the left side and more like ouch i want to lie down but not so bad where i need to take medicine or cry. They keep saying my scar will go away but i had surgery last august and its still there as clear as ever, and i still dont have much sensation there. i haven't tried Questran. Originally i was on flagysl like 4 times a day and pentasa and and some other kind. They thought about remicade, but have since decided its not severe enough. I take multivitamin daily but am not on anything other than that. i really jsut take what the doctor tells me to. haha. So Roo is your daughter?
 
Yes, Roo is my daughter.

If you have had your terminal ileum out you should be on B12 injections. I can't tell you that some of the symptoms you are experiencing are due to B12 deficiency but they do fit. When are your next bloods due? When you have them done get them to check your B12, Folate and Iron stores. Iron stores is important because your serum levels of Iron may be normal but your stores can still be depleted.

I'm assuming you are caucasian because you said you were deathly pale, if so your scar should be starting to fade. I guess everyone is different but in Roo's case it started to slowly fade after about 12 - 15 months I think, eventually it should become a white/silvery line. The numbness is normal and will most likely always be like that way simply because it is a scar and that is how they heal.

If possible get onto the doctor and get some Questran prescribed and see if that helps with the loose stools. Put it into the search function and have a read up on other peoples experiences. Pen also has excellent advice as she has had 2 resections herself and no doubt she will be along.

Keep asking questions and we will do our best to answer them. Above all remember you are not alone with this!

Dusty. :)
 
Dude, where the hell do you live? I'd have murdered my doctor for being so negligent for so long.

I feel you on all the knife in my gut pain. That's always been my top symptom. I was 59 pounds when I was diagnosed as a ten year old. My face was a triangle.

I don't get the watery stool much but I did have diahrea for a few months straight during a bad stint last year. Usually that means you are not digesting and absorbing nutrients properly. Could be anything from stress to a fistula.. when was your last colonoscopy? You may be due..Crohnies have to get them quite often.

Good luck and welcome to the boards!
 
You should be on regular blood tests since you are on Azathioprine, at this point I think Roo was still on monthly. They are testing you aren't they?? If so just get them to add the extra tests.

Also give them a kick up the rear...........you should be on B12 injections, with your terminal ileum removed you won't be able to absorb it from your food.

Dusty. :)
 
I was on pretty regular ones but not anymore, i thought that was weird too. I think they said that theyd need to if i wasnt getting enough? or something like that
 
How will they know if they aren't monitoring you. You need to be on regular blood tests with the drugs you are taking. That is not something they get to pick and choose about and if they are then they are not doing their job. Roo has been taking Azathioprine for 4 years and the longest interval between blood tests has been 3 months. Now that she has moved her new GI has her back on monthly again. The same goes with the B12, it is something you will need to have at least 3 monthly, if you have injections, for the rest of your life.

What are the chances of you getting onto a GI that is more on the ball than the one you are with now?

Dusty.
 
Okay, ill make that happen then.

Its probably not high, theres only so many peds GI at Iowa. But you're saying that theres probably more that can be done?
 
Yeah, well what I am saying is...........

- You are on Azathioprine so you need to have your bloods done regularly.
- When you have blood tests done make sure they test along with the regular stuff, B12, Folate and Iron Stores.
- You have had your terminal ileum out so you need to be on B12, most have injections.
- It may be different for you but Roo also needs to be on Folic Acid, 5mg three times a week is an amount that keeps her within normal limits.

I just don't feel you are getting adequate care. As I said before I don't know but some of your ongoing issues may be related to B12 and perhaps other deficiencies. How old are you?

Dusty.
 
sorry you have had to go through so much pain. Agree with the blood tests. My daughter get s blood taken every time she goes in for Remicade. She is 14 and was diagnosed at 12
She had a resection in August 2009.
 
I am on Remicade and get bloods drawn every 2 months - my B12 has been low (D was low for a while too) and I get injections every visit....

If you are not getting regular lab work to monitor things, you really should be - and I agree, another doctor might not be a bad thing!
 
So you still see a paediatric GI?

Here you see a paediatrician until you are 16 but since Roo wasn't diagnosed until 14 I didn't see the point so she went to an adult GI from the outset after her diagnosis. If you see a paediatric GI maybe you could change.

Dusty.
 
Hey thissucks...
Man, I don't even know what to say...you've had quite the experience thus far. After I had my appendix out, they gave me morphine, I was allergic. It caused severe headache and vomiting. Yes, vomiting right after abdominal surgery is severely painful. That was 20 years ago, and I remember it vividly. I haven't taken morphine since, but this past weekend, I was in the hospital and they gave me Dilaudid. Dilaudid is a derivitive of morphine. I had same bad reaction, severe headache and vomiting. I was on the PCA pump, I refused to use it. The pain of my CD was more tolerable than the headache and vomiting. They finally switched me to Fentanyl, it doesn't work as well, but much better than Dilaudid for me.
I hope the worst is over for you, but don't expect the D to go away, especially since you've had portion of terminal ileum removed. You stools will be soft from now on. If you are able to tolerate fiber, it will help. I can eat more fiber when I'm not having problems with my CD. I'm in the middle of a pretty bad flare, getting ready to start Humira. I've been on everything else, but the Biologics. If these don't work, I guess it will be surgery again. (3 resections so far) My CR surgeon is reluctant to do surgery again because of amount of bowel I've had removed so far.
Everyone else gave you good advice, you should be on top of your nutrient levels. Being deficient in vitamins and minerals can be detrimental to your health. If you feel your meds aren't currently adequate at controlling your CD symptoms, talk to your GI. Arm yourself with information and take it with you. Explain that you should not have to put up with these dilbilitating symptoms (watery stools). Take control, just because you are young, doesn't mean you cannot be a key player in your health care. Knowledge is power. You are fortunate to have the 'net to help you gain insight into CD.
Remember, everyone is different. What works for one, doesn't necessarily work for another. You can get good ideas from the folks here on this forum. It has offered me great insight. I've had CD for 20 years, I'm just now really taking charge of my health. I've pretty much tried to live my life like I didn't have this condition. I'll admit, partly due to denial. I've been through so many meds without any results, I finally gave up on treatment for a long time. Now I'm back in a flare. I feel I'm getting too old to not try something else to treat my CD. I want my life back. Constantly dealing with these symptoms can take a toll on your life. Of course, I don't have to tell you that.
Anyway, sorry I sort of rambled on. Welcome. Hope you stick around.
 
My doctor told me that its a possibility that my stools will never be the same but i havent really accepted it yet. There was one time last winter when i had a normal one, does that mean anything? Im trying to be better on top of it. I think im getting an appointment scheduled sooner than December. Thanks for all your help! Oh and in the hospital one nurse found out a way to keep me from puking. She gave me wuite a bit of nausea medicine 15 minutes before giving me Dilaudid. It worked very well
 
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