Diagnosed back in January; struggling

Hi tinamburns - I suffered with UC for 5 years and found the Meds especially hard going. For the Consultants it’s usually about getting the right Meds in the right combination through trial and error. That won’t sound satisfactory or scientific but it’s seems to be true. This is a good place to ask questions and I’m sure you’ll get some more responses. Take care, hopefully things will improve and they’ll find something that works for you.

Hi Tina (I assume that is your name, correct me if not.  I am not sure how much I can help as I am in a similar position.  I was diagnosed in February and like yourself been given a variety of medications including Prozac, Prednisolone, Calcium and they gave me another one last week.  Like you I am really struggling especially with the side effects of the Prednisolone - I am really up and down, and just cannot get to sleep for hours at night.  I then spend all night eating, which is really gross.  When I was diagnosed, all I wanted them to do was take away the pain and the other symptoms which they are trying to  do with the meds.  However, a month or two on, I have really started to struggle with my mental wellbeing and it sounds like you might be in a similar situation.  I have begun to realise that this aspect is just as important but there is little focus on this.  When you are awake most of the night things become all out of proportion as we all know, so that does not help I blame myself, worry about whether I can continue to hold down a full time job, how often I will have flare ups, whether I will be able to travel etc etc.  Obviously this anxiety is not helping my condition at all.  I don't know whether this will work for me (and it may not be your sort of thing) but I have enrolled for a mindfulness course which starts next month.  I have never done anything like this in the past, but whilst my consultant didn't suggest it he said that it was a really good idea.  For me the mental acceptance is just as difficult as the condition - it may not be for you, but may be worth thinking about.  It is  so tough, I know but take it  day by day and we are all out here to give you support whenever you need it.

Hi Tina, my daughter was diagnosed with UC 2 1/2 yrs ago at age 15..after colonoscopy was put on   prednisolone.  Taking the prednisoline early in the morning helps as this is when your body naturally makes steroids apparently.  (You probably already know this but we found it helped)  The steroids helped initially but after a relapse she  was put on azathiaprine and then Infliximab. Infliximab stopped the symptoms within 48 hrs and she has been in good health generally.  Like most meds, they do have side effects.  These medications carry

risks.  However, these are risks you have to weigh up should you need these stronger medications. Infliximab is an expensive medication and drs try the other meds first to see if they work. It's better this way even though it means a lot of trial and error. However, stronger meds are available should you need them.  I think the mindfulness course will be very good for you, my daughter struggled with the ups and downs also, missed a lot of school during her GSCE years. It would have been good for her had it been available. Keep positive, there is light at the end of the tunnel.  I hope this helps.  All the best  [smile] Report this

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Hi Tina, I've had UC for 5 or 6 years, it's definitely not your fault. As far as I'm aware, sufferers are genetically predisposed to it and high levels of stress or being up at night time for a long period can trigger it (I worked nights for 5 years). I don't know if it will help, there are different drugs suited to everybody but I found azathioprine was a godsend, after spending a few years searching for something that really helped. Hope this helps in some way. Things can get better, I'm working a full time job and enjoying life so there's light at the end of the tunnel

Get off all meds, get mesalamine enemas, try to keep it in overnight, then try to keep 2 in overnight, then 2 and one in the morning, administer enemas in bed not bathroom, put trashcan near bed for used enema, put towel down on bed just in case, put hips on 2 pillows to use gravity, extra line is fine, yes it may be uncomfortable after administering, just lie there and relax for 30 min and any uneasy feeling will go away, go to sleep

If mesalamine enemas show symptom improvement, then don't stop just because symptoms went away and enemas aren't as easy as taking a pill

Remove red meat from diet, cured meats, fried foods, dairy, refined sugar (use honey in your coffee instead), if you eat something that messes you up then now you know one of your food allergies, listen to your body

Eat soft foods, avacado, berries, eggs, fish salmon or white fishes

Reduce fiber Intake to let your system have some.time to heal

Eat a minimum of 3 coconut milk yogurts a day found at the Joe

Drink coconut water non flavored, keep in fridge and point over iceakes it the sweetest, try to shoot for a liter a day, you can get it cheapest at the warehouse stores

Take a sip a day of inner-eco coconut water that is a LIVE probiotic, DO NOT SHAKE BOTTLE!

Do all this for a minimum of a year and keep doing what you think after that

Stop stressing about things if you can

I am 3 years in remission, and still drink 1/2 liter coconut water a day, no red meat, not reall you any refined sugar, no cured meats, and still use inner-eco

All of this was shown to me by my maker and I am happy to pass it on

Peace

Tina,

so sorry I didn’t see your post earlier. Not sure how your doing right now but assuming your situation is the same allow me to Share this with you.. It will get better! More than likely the prednisone is a short term means to get your colon under control. It will however make you feel quite different. As time goes the doctor will probably change you to a med to help long term. You do have a disease that won’t just go away but you will learn to manage it. There is absolutely no reason why

you can’t lead a perfectly normal life even if you have UC. 

Your right however about one thing for sure. There is nothing you did to cause this to happen to you.

Dont give up and Do Not allow it control your life. Your not the first person to walk this road and you won’t be the last! I was diagnosed this last November. I know how you feel. Still sorta learning myself but learning to handle things. Be steadfast and  strong, build a support system of family and the right kind of friends around you that will support you and understand you and what you are dealing with. It’s up to you, but you CAN do this!

Oh Tina! You are only 18!  You didn't have time to do this to yourself! And of course your mind is going 110 MPH---you are on steroids.  That's the most common side effect.  I even hallucinated for a while on a topical steroid for a rash.  They are powerful anti inflammatories.  And likely they are doing their work to help. 

Like PhillipT said, this is likely a shorter term course of medications to get the inflammation under control. Though the anxiety will tell you differently. I have been living fine with ulcerative proctitis for nearly 5 years.  But when I first got sick I was sick. I was incontinent and bleeding so badly it was like I was menstruating from my rear.  I was so sick I thought 'no one who is this sick lives.'  But the course medication brought it under control in time.

I am turning my mom switch on now...what do you have, day to day, or even minute to minute that you enjoy? No matter how small, make sure to work in some ways of being very kind and gentle to yourself. Your body is working hard at healing! You both need all the tenderness you can find. I have a song list I listen to before bed to encourage restorative sleep. I try to get some sun. Stretch a bit to help circulation. Whatever it is,  please be kind and loving to your healing self.  You will get better! I promise! 

Some people believe diet doesn't play much of a role. My own GI doctor isn't overly concerned about my diet. It isn't a cure, but I certainly found symptom relief by going Paleo and eating only whole, plain foods. Low sugar and sometimes only salt for a spice if things are feeling 'iffy'. Very few packaged foods--mostly frozen veggies.  Have you noticed diet playing any role in your symptoms? Dairy and gluten are often culprits in symptom exacerbation.... 

Also, have you checked with your provider about probiotics? Some people have great success in symptom management with probiotics. 

I can tell you are really in distress.  Please feel free to PM me if you need anything.  I am sending healing energy your way! 

Listen to Maddiesmom Tina. She’s giving you some excellent advice. Everything she said is 100 percent correct!

Hang in there young lady, it will get better.