Another newbie saying Hi and my short Story

[lifesover]

Hello every one.

My names Ian.

Sorry I have to join this forum really, but I need all the help I can get, I wont be much help to anyone I´m afraid, I´m learning, but nice to meet you all, I will try to keep my story short.

I Retired young in Uk, left to start new life in Spain, 3 months later started with a little blood in stools, Doctor in Spain sent me for colonoscopy, had to wait a year, diagnosed with U proctitus. Tabs they gave seemed to help, Claversol I think they were, had blood tests but results got lost.
To complicate matters I decided to move to Hungary, I couldn´t get the tablets so was given Pentassa, didn´t do a thing, been getting worse and losing weight. A friend came to the doctors to translate for me and she got me a Colonoscopy here in the next week, Now I have U C. 40 cm.

I have been given Budenofalk 3mg 3 a day, Medrol, reducing each week from 4 a day down to 1/2 next week, kaldium 600mg, Pentassa sachets 2g 2 a day, Maltover chewable. I also take lachsol+Folsaur b6 b12 and I purchased some good multivitamins. I have trouble translating my tablet descriptions. The language barrier is not good.

The problem is I feel much worse now and I am in pain and so tired, which I wasn´t before having the colonoscopy. The first week after it I felt on top of the world, then I had a curry from a jar and have been bad since.

I am drained, If I close my eyes to sleep I am soaking wet with sweat. I´m trying to change my diet but I am still suffering after food. I now have honey instead of sugar and eat fresh coconut daily after reading about it´s amazing qualities. I think the drugs are making me tired. I also drink Green tea and peppermint tea.

Hope I haven´t bored you but was advised to tell my story.

Like I said I´m sorry I won´t be of any help to anyone as I´m at early stages, I feel my life´s over, I was a biggish muscular chap and now I have wings developing under my arms.

Will I ever get on top of this and get some normality back?

I look forward to reading every ones posts, it´s good to be among folk who understand this dreadful illness.

 

[Rossy]

Will I ever get on top of this and get some normality back?

.

Too right you will Ian,

It isn't easy and you've had a tough time but there are medications out there that will help you. Firstly you need to get pain relief and find a suitable med that will ease your symptoms, its a bit of trial and error to find what works for you, obviously pentasa doesn't.

As you say it has spread from procitis to UC and you need to stop it spreading further.

Budenofalk, i believe is similar to budesonide which is a targeted steroid that works predominantly in the right side colon, possibly why this is not working so well for you. Have you tried predisonone which will work on the whole colon?

I think you need to go back to the Docs and get them to review your meds, but things will improve and on the right medication you will get to feel much better,

take care

 

[Astra]

Hi Ian
and welcome

Your life is so NOT over!
can't you come back to UK and get a second opinion? Pentasa will only work as a maintenance med when you've not got inflammation. I agree with Rossy, Pred might be a quick fix, but you've got to go back to gastro, can you take someone who speaks the language?
glad you found us, lots of support here for you and friends
lotsa luv
Joan xxx

 

[My Butt Hurts]

Hi Ian, glad you found us!
Sometimes it does feel like your life can't get any worse. For sure it can get better! I was using the toilet up to 14 times a day during my last bad flare, and right now I feel fabulous! You can feel that way too, it just might take time for your body to get there, but remission is within reach.

I had heard about the benefits of coconut too, but I wondering if it is too fiberous and may be bothering you, especially if you eat it every day? just a thought.
I hope you get to feeling better very soon.

MBH

 

[lifesover]

Thanks everyone.

I will ask the Doctor for some Predisonone when these tabs get low. My friend speaks good Hungarian and helps with the docs here. I don´t fancy a second opinion if it means another colonoscopy, I´m scared stiff and didn´t enjoy the last two.

I don´t each much coconut just a small piece daily and I drink the milk, not sure if it does anything as only just discovered it, I´m so desperate I will try anything.

 

[Crohn's 35]

Hi lifesover! :welcome: It is a hard disease to control. Do not feel you are not contributing because others read your posts and may have the same problem in the same country you are in or newly diagnosed. Others who may have the same symptoms can now rest assured they are not thinking it is all in their heads and seek medical help.

YOU are new at this disease and works for us may not for you. Pentasa and Entocort are mild drugs. Prednisone works great for short term to get it under control. Just make sure you are on adequate Calcium amounts. I dont fear Colonoscopies because there is no pain , I get good drugs so there is no pain. What do you fear of them the most?

Glad you joined us, great community we have, and lots of info. Ask away someone is always here to help. Take care!

 

[DustyKat]

Hi Ian and :welcome:

I'm so sorry to hear you are going through all this, the language barrier must be very difficult when you are dealing with illness. Please don't feel that you have to be able to give advice to be a part of the forum 'cause you don't! If you only want to ask questions that is perfectly OK, so please stick around and ask away. I hope you get relief soon................Welcome aboard!

Take care,
Dusty

 

[lifesover]

Hi pen,

Both my colonoscopies hurt me despite a drug that was supposed to make me drowsy, but even worse, I had to drink three litres of stuff to clear me out the day before.

The weird thing is for a week after my colonoscopy I was pain free and not wanting the loo, I felt alive and I realised just how down I had been, then on day 9 It started with a vengeance.

I now have pains that I never had before with little or no medication. This is confusing me since now I am taking up to 10 tablets a day and would have expected some relief.

I wish I could think about something else, it´s taken over my life.

What do you think is making me sweat as soon as I close my eyes and nod off? I wonder if it´s Green tea?

 

[DustyKat]

This thread may interest you Ian....................

http://www.crohnsforum.com/showthread.php?t=12292&highlight=sweating

Dusty.

 

[Dexky]

Welcome aboard Ian!! You'll definitely be able to contribute once you find a treatment course that gives you some relief. Telling others what has or has not worked for you is helpful for everyone to learn from. Good luck!!

 

[Crohn's 35]

Ian I am assuming the sweating can be from Prednisone alot of people have that. Never stop the green tea, it has loads of antioxidants and that is good. Providing it is just water and green tea. Decaf is better again.

As most people know this disease is very undpredictable and some are in remission some never see remission. There is no set or limit to this disease. I hope you feel better soon, keep us updated ok?

 

[Cat-a-Tonic]

Hi Ian, welcome to the forum. With regards to the night sweats, I get them too but only when I'm in a flare. Sometimes they'll be hot sweats and sometimes cold sweats, but either way I wake up absolutely soaked. My clothes, blankets, sheets will all be damp and really uncomfortable, sometimes it's so bad that I have to double-check that I didn't pee the bed or spill my glass of water off of my nightstand! I end up doing a lot of laundry whenever I flare! So it's not just you and it's not because of something you ate or drank, it's just what a flaring body tends to do during sleep. Once you get your flare under control, the night sweats should lessen and/or stop.

 

[lifesover]

Wow What a welcome, I´m glad I found this forum.

I have been really weak and poorly lately and getting puffed out even after just standing.
Checked my BP today and it was 109/50 that is way too low.
I have high blood pressure and take Exforge tablets which are great at bringing it down to normal.
I have just done a google on Exforge and read that it´s dangerous to take them with Potassium tabs, which I have been prescribed.
I will stop taking Exforge for a while and keep an eye on things.

You really have to be on the ball with this illness, The doctors didn´t bother to ask what I was taking, good job I looked.
Maybe I will pick up strength over the next few days? I shall report back maybe in a new thread.

Just noticed too, one of my tablets is Medryl, (Methylprednisolone).

 

[lifesover]

Hi every one this is ians wife heather, I just wanted to give everyone an update on ian.
Ian was rushed in to hospital yesterday for a blood transfusion as he has lost so much blood. for the last 3 weeks he has been so poorly and getting worse and would not let me call his dr any way i called him monday and we saw him yesterday and he had blood and urine samples taken and he also had a hugh heamoroid which was cut and the blood clot taken out he also has to have calcium injections he is also to have a minor op tomorrow to clean him out and a scan and another colonoscopy on monday. the last few weeks have been awful as i felt so inadeqete as he is asking me to help him and i couldnt. Iam so pleased he found this site although he never told me until today that he had joined it anyway i will keep u all posted

 

[DustyKat]

Hi Heather,

Thanks so much for the update. Whoa what an awful for you both! Thank goodness you called the doctor and he is getting treatment. Good luck with the tests. I will be thinking about you both. Tell Ian not to hang around if it happens again!

:goodluck: :getwell:

Take care, :hug:
Dusty

 

[Astra]

Hiya Heather

Thanks for the update on Ian!
Poor Ian, what a terrible time he's had, really hope he'll be ok. Give him our love and good luck for the op, and hope he gets some answers with the scope.
Let us know how it goes Heather, and make sure you take care of you too!
xxxx

 

[Dexky]

Hi Heather, thanks for the update!! What do you mean by a minor op?

Hope you guys are not near that toxic sludge!!

 

[lifesover]

blood transfusion

Hi every one just a quick update. Ian has had another 2 litres of blood today and they have also given him glucose they also put him back on the salazopyrin 3 tabs 3 times a day he also said he has been given a yellow tablet dont know what that is will try to find out tomorrow. the minor op is just to clean him out i think and he also had a couple of stitches removed from his heamoroid they have also put him on pain meds. About the toxic sludge thankfully it is not any where near us although if it had gone into the river raba that would not have been good as it is only about 5 kilometres away from us. Anyway thats all for now and when i get back from the hospital tomorrow i will post another update thankyou every one.

 

[DustyKat]

Hey Heather,

Give Ian our best, tell him we are thinking of him and we hope he his back on his feet and feeling better soon!

Thinking of you guys, :hug:
Dusty