18 year old with Ulcerative Colitis -- miserable and thinking I need to go to the hospital

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SickandTiredofUC
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/23/2007 5:39 PM (GMT -7)   
Okay, so from the title I'm sure you can glean some information. I'm 18 and was diagnosed with Ulcerative Colitis last June/July. I spent a week in the hospital on IV steroids, pain killers, and a no eating diet ( if you can call that I diet *sigh*) It's now Nov. 23, and I've never gone into remission. Thanksgiving just passed and I couldn't even enjoy it because I was in the bathroom every five minutes. I'm bleeding, have hemorrhoids, in a lot of pain in the rectum and intense stomach cramping. My doctor in the emergency room believed that in order to get colitis into remission, you have to eliminate the pain. Unfortunately I was only 16/17 (turned 17 in the hospital) at the time and couldn't keep him as my doctor because he didn't deal with pediactrics. My new doctor doesn't believe in pain medication in any way, shape or form, as well as being a dis-believer in the idea that UC is caused my stress and the food we eat. His solution to Colitis: medication. I'm extremely depressed at this point and I'm thinking that I should go down to the emergency room because the pain is so intense. I could really use some advice at the moment, because no one at home is being of any use.
Thanks,
SickandTiredofUC

laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 11/23/2007 5:50 PM (GMT -7)   
You sound like you're at the point when I usually decide to go to the ER. I agree that lots of meds is no fun, but you've got to do something to get into remission. Once you're in remission you can start treating yourself with more natural supplements and diet. Don't wait until it gets any worse; go to the ER. The longer you wait, the longer it will take for you to heal.

That being said, what medications are you on? Have you tried the rectal meds? The immunosuppressants? There are alot of treatment options out there, and with the right one you should be able to get things under control. Hang in there and keep us posted!

Laura
Diagnosed Ulcerative Pancolitis
25mg Imuran

Probiotics
Fish Oil
Vitamin C
Slippery Elm
TURMERIC!!!


SickandTiredofUC
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/23/2007 6:02 PM (GMT -7)   
Hi Laura,
Thank you so much for posting so quickly. I really want to go to the ER, but I can't seem to get anyone to realize how bad it is or how much pain I'm in. I'm only 18 and as I'm sure you know, it's hard to get people to listen to you when you have UC because the symptoms are regular all the time and people get sick of listening to you. I'm so sick of getting the answer "I don't know what to tell you," or "Go take some Imodium", or "Deal with it". No one gets it because they don't have UC. I'm also in college and the thought of going into the hospital makes me nervous because I don't want to miss class. I don' know what to do anymore, its just so frustrating. As for medications, I'm on Asacol and 6MP (mercaptopurine - immunosuppressants). I also have the Canasta suppositories and enemas. The problem with the suppositories and enemas are that they are painful to use, and that makes me not want to use them.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 11/23/2007 6:36 PM (GMT -7)   
Dear Sick and Tired -- it's easy for a doctor or someone else to "not believe in pain meds" when they are not the ones in pain. You are a heck of a lot younger than my husband and maybe age has something to do with this as well but there needs to be some kind of pain management administered to you. You might need a different doctor with a better bedside manner working for you and your best interests which is also trying to get you in somewhat of a comfortable state. I've said it before "we treat our animals better than we treat humans sometimes"....it makes me crazy.

It is just awful when you are in this bad of a flare with no light at the end of the tunnel. The light is there - it just takes time but in the meantime it is so difficult to deal with. This disease does not get the respect and attention it deserves because people do think that you just have a bad case of D or stomach cramps and take an OTC medication for it.

The ER might not be a bad idea. You need to be put in a comfortable state and maybe get lucky and get a doctor who can do more for you than what is currently being done. Take care - I'll remember you in my prayers. Keep us posted and hopefully you will get some relief real soon.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 15 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enemas AM & PM, folic acid 1mg, Fosamax 1x month


haileys letter
Regular Member


Date Joined Nov 2006
Total Posts : 296
   Posted 11/23/2007 6:41 PM (GMT -7)   
I am sorry that you are not finding relief from the medications that you on. I have a seven year old daughter that was diagnosed at age 18months with UC. She also took all the medications with no relief. You can read her story under my signature.
 
She has been well and off of all medications for over one year.
 
Please email me if you need to talk . Hang in there and I am thinking of you.
 http://www.healingwell.com/community/default.aspx?f=38&m=643365&p=1<!-- Edit -->
Dave & Kelly
Daughter 7
Diagnosed at 15months with UC (pancolitis) then  Selective IgM defiency
Took many medications, no relief,GI wanted to start her on Imuran.
Took her to a natural doctor. He did a detox on her body.
Going to the restroom 15 times a day, developed pneumonia,recieved shots of Rocephin (wide sprectrum antibioitic) within24 hours of Rocephin bowels were formed.Going on Eight months without any medications and she is doing great She takes Forvia multi vitamin ,Natures Way Primadophilus Reuteri, Viactiv calcium chew, fiber chews daily
 
 
 
 
 
 
 
 
 


SickandTiredofUC
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/23/2007 6:45 PM (GMT -7)   
Dear Another UC Wife,
Thank you so much for the support, you don't have any idea how much that helps. I really believe that in order to get remission started, pain has to be eliminated. Even after reading responses to my post to my parents, they still only think in the long run, not right now, in the moment when i'm actually in pain. Do you think it would be a good idea to take myself to the ER, or would that be to rash? I just really don't know what to do at this point because no one is listening to me. I feel like I have to be sobbing in tears at 3 o'clock in the morning to get any response. I don't know what I have to say to get them to take me to the Emergency room. Any advice?

Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 11/23/2007 6:47 PM (GMT -7)   
If you're having intense pain then it would be wise to go the ER, just to be on the safe side.  I've had little respite from flare-ups too - but try to stick to the meds.  Also, keep watching your diet, even if your doctor thinks it has no effect on the UC.   
 
I got into an MBA program right after being diagnosed with UC but would not consider any trade-off between getting the right treatment and college.  Though college is extremely important, I strongly feel that taking care of your health is much more important (by the way, I recently completed an assignment from my hospital bed when I had to go in for blood transfusions and an overnight stay so there's a way to get your health and school taken care of at the same time!).
 
Don't get down on yourself. There's lots of us in the same boat and though I still need to get better, I've read some wonderful posts from others who are leading 'normal' lives with UC.
 
 
Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6-week) tapered course of Pred in 10/07, flaring up since coming off it.
Currently on: 12 x 750mg Colazal (6 - twice a day).  
Diet: Cut out caffeine and alcohol after diagnosis.  Been vegetarian for many years.  Low dairy, low carb, and avoiding foods that are processed, fried, spicy, acid forming, fungal, contain yeast (i.e. I don't have a life, but desperate times call for desperate measures!).


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/23/2007 6:56 PM (GMT -7)   

I'm sorry you're going through that. I agree with Laura. Do what you can, take what you need to, to start feeling better right now. For me, Rowasa enemas were a life saver! I know just how miserable you feel. But, don't just give up and rely on taking drugs the rest of your life, if you don't need to. There is no exit strategy with prescription meds. I also had many doctors who said changing my diet wouldn't make a difference. They were very wrong, for me. I don't know why, but we put more faith and trust in drugs to help cover the symptoms of our diseases than to at least experiment with something simple and side effect free, like...changing our diet. Doesn't help everyone, as I read here on this forum, but I know of others here who have been helped. Geez, you're only 18, and you deserve a better life! Doesn't everything we eat go through our digestive system, where our UC manifests itself? If food didn't affect people, then why do we get a "buzz" when drinking alcohol? Changing my diet (an antifungal program) was the only thing that helped me get well again. For me, my UC symptoms had a fungal etiology. (Were you ever on antibiotics?...a probable source of fungal overgrowth) I'm not saying that changing ones' diet will help "everyone", but knowing that fungal overgrowth can manifest as UC symptoms, I would at least give an antifungal program a try, if I were you. It is not a magic pill or potion, but a conscious lifestyle/diet change, at least until you get better...if it is  afungal condition you have. You won't know until you experiement. However, right now you need to get relief for your symptoms. Do whatever you need to do to do that. Please don't discount changing your diet, until you have actually tried it and found out whether or not it can help you. You are so young.........Only you can decide whether it is worth it to try. Take care...........

Kim :)


SickandTiredofUC
New Member


Date Joined Nov 2007
Total Posts : 5
   Posted 11/23/2007 7:08 PM (GMT -7)   
Thank you for all your responses everyone. I'm still at home, in my bed, in pain, but at least my spirits have been lifted a bit. Thank you so much for making me smile, just having the support of other people going through what I am helps so much as I'm sure you all know. I promise to keep you all updated on what goes on tonight and if I ever go into full remission.

philly-fan
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/23/2007 8:05 PM (GMT -7)   
I'm really sorry for your predicament. For starters, I'd try to find a new doctor. You need to have a dr that is on the same page as you as far as your treatment. This disease usually doesn't go away overnight, so you need to have a good working relationship with your doctor.
I canned my first doctor for something similar. My original doctor had a terrible bedside manner and wouldn't let me try and taper the pred for a second time after I had a flare. My current doctor is open to my suggestions about my treatment.
I think in order to achieve remission, the inflamation needs to be eliminated. Have you been on prednesone?
Most people hate it, BUT, it usually helps. .
Steve


Asacol 1200mg-3x a day

Probiotic=metagenics ultra flora plus DF

Hydrocortizone when needed

Off the prednesone since September 8th (omg)


Heart meds

Lipitor,Toprol, aspirin 81

synthroid


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 11/23/2007 10:08 PM (GMT -7)   
Yes the rectal meds hurt if your rectum is inflammed and you have open ulcers but that is what they are for, to get the inflammation and bleending stopped. You gotta grit through the first few days of the rectal meds. Ask for a prescription for lidocaine enemas. That will numb your rectum right up and make the other rectal meds -CANASA suppositories- more effective since you'll be able to tolerate them easier once numb. What about cortifoam? Do you have a prescript for that? It's pretty fast acting. You can regular dose with it for a few days then cut back to every third day dosing with it so you don't get sides or have HPA suppression from it. Also see about anti nausea meds. They should fix you up with something I'm sure. Ask them about benedryl and something like darvocet or hydrocodone. There's also pepsid AC. Lots of meds to try combinations with. Just make sure that what you take is cross referenced for any cross reactivity among all these meds.

As far as food, eat lots of sticky white rice, potatoes and calcium rich foods. It will help slow down the bowels big time.

keep hydrated with water.





SickandTiredofUC said...
Thank you for all your responses everyone. I'm still at home, in my bed, in pain, but at least my spirits have been lifted a bit. Thank you so much for making me smile, just having the support of other people going through what I am helps so much as I'm sure you all know. I promise to keep you all updated on what goes on tonight and if I ever go into full remission.

Post Edited (Horus) : 11/23/2007 11:03:59 PM (GMT-7)


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 11/23/2007 11:07 PM (GMT -7)   
Hey there!
I can offically atest to how you feel. I was diagnosed at 15, and I'm 18 now and in college just like you. Don't even think twice about missing class to go to the hospital. Your health absolutely comes first and its a medical reason, so you professors have to cut you some slack. I know how you feel about just wanting it to go away. It took me two years to finally get it under control and its was rough getting there. If you feel as though your GI isn't getting you anyway, go for a second opinion. My mom and I found that if you aren't happy or satisfied you have to push until you get a little more understanding. I've been through it all. Trust me, you'll get there. I promise :)

Sam

Diagnosed in September 2004

Currently on...4800mg Asacol, 25mg Elavil, Ortho Tricyclen and some immodium

"If you don't like something, change it. If you can't change it, change your attitude"

Maya Angelou


birdiem
Regular Member


Date Joined Aug 2007
Total Posts : 326
   Posted 11/24/2007 12:30 AM (GMT -7)   
I'm so sorry you are going through this. I had to deal with a lot of college/health issues--I even had to take a semester off after surgery. I know it sounds terrible and daunting, but you just can't do your best in school if you are sick. I also know what it is like to have people devalue the seriousness of your symptoms. I am very thin because of colitis and my diet restrictions. Whenever I am in the ER (which has been more frequently than I would like), they have a therapist come in and talk to me about my "anorexia." I know it is hard, but sometimes you have to make sure that you have a doctor that is taking you seriously. even if it means screaming at the top of your lungs. when it comes to your health, you don't have to be polite, you just have to get better. there are doctors out there who will take you seriously and you deserve to have one. please keep us posted, you are in my prayers.
katie
23
diagnosed with cecal volvulus, 2006; two colon resections in the same year
diagnosed with colitis 2007
malrotated colon
no cecal valve, removed during surgery
gastritis

VSL #3
Amitriptyline to slow gastric emptying
Forvia
compazine


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/24/2007 8:59 AM (GMT -7)   
I'm really sorry to hear about what you have been going through. It is very difficult, as well all know. But harder too when you have to justify going to the ER when you know that's what you need.

Here are three suggestions... take them if you think they will help, ignore if you like. :)

1) Maybe the Canasa suppositories are too hard to use when you are so imflammed. I mean literally, they are hard as opposed to the liquid or foam enemas. Ideally, you could ask a doctor to prescribe small amounts of Rowasa, Cortifoam, and Cortenema. Then you could figure out whether one of those will work better for you. (The Rowasa would be the best because it doesn't have steroids, but the others might be more effective for the short-term to get this under control.)

2) Try to find the best and most compassionate doctor you can. Do you go to school at a university with a med school? If so, that would be a good place to start. One thing I do when I'm looking for a doctor is to treat it like a research project. That way, I force myself to investigate every option, not be shy about it, and keep going until I find the right doctor for me. You can call other doctors who you like and ask them for a GI suggestion. That's one good way because often compassionate and competant doctors will know who THEY would go to if they needed a GI dr. This is a pain in the ass to do when you're feeling like crap but it's worth it if you can. Maybe you can find someone to help you?

3) Try not to let other people determine whether you need to go to the ER or call a Dr. This one is very hard to do. But maybe you can remind them that if they are ever in pain or need medical care you would not assume to know more than they do about how they are feeling. (Of course, this may not be easy with family, it's an emotional subject.)

Hang in. You are very strong for being able to deal with this.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

Post Edited (julee70) : 11/24/2007 8:43:18 PM (GMT-7)


laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 11/24/2007 2:30 PM (GMT -7)   
I spent one month of my last semester of graduate school in a hospital bed and I was able to get all of my work done, so definitely don't let that stop you. Are you feeling better today?
Diagnosed Ulcerative Pancolitis
25mg Imuran

Probiotics
Fish Oil
Vitamin C
Slippery Elm
TURMERIC!!!

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