as my ability to cope with pain is not great at any time! Just totally overwhelmed by this. He says I have definitely got a flare up and he is concerned that I may also have strictures. All I can think about is how do I go back to work like this when I feel crap and sorry for myself. Sorry about moaning so much! AnneAnother trip to the doctor - and another - and another!!
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Another trip to the doctor - and another - and another!!
Just back from the out of hours doctor due to pain all night. Chomped on paracetamol and buscopan all night but now maxed out on doses and cannot take anything more until noon! He has prescribed tramadol and has told me to see my own doctor tomorrow for an urgent referral to the consultant as he recommends I get back on budesonide asap! Not a happy bunny at all as my ability to cope with pain is not great at any time! Just totally overwhelmed by this. He says I have definitely got a flare up and he is concerned that I may also have strictures. All I can think about is how do I go back to work like this when I feel crap and sorry for myself. Sorry about moaning so much! Anne
as my ability to cope with pain is not great at any time! Just totally overwhelmed by this. He says I have definitely got a flare up and he is concerned that I may also have strictures. All I can think about is how do I go back to work like this when I feel crap and sorry for myself. Sorry about moaning so much! AnneDear Anne,
I so hate this disease. I'm so sorry you are in a flare. I had my breakdown last week when my doctor told me he did not know how to help me.
Hang in there, get back on the budesonide if that helps you. Stay on it a long as you can. Treat yourself as you would a newborn, very soft bland foods.
Hope you feel better soon.
Hugs,
K
I so hate this disease. I'm so sorry you are in a flare. I had my breakdown last week when my doctor told me he did not know how to help me.
Hang in there, get back on the budesonide if that helps you. Stay on it a long as you can. Treat yourself as you would a newborn, very soft bland foods.
Hope you feel better soon.
Hugs,
K
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Thank you Kitty and thank God the Tramadol has worked and I am finally out of pain! Or at least it is now just a dull ache in my side! I will hopefully get a quick response tomorrow and get back on the steroids. I feel such a wimp after the event but my pain threshold is not high! 
I guess the worst thing at the moment is not feeling in control of anything. But I have chicken defrosting and applesauce that I had forgotten was in the freezer and am going to be eating very carefully for the next few days and hopefully I will see improvement.
I guess the worst thing at the moment is not feeling in control of anything. But I have chicken defrosting and applesauce that I had forgotten was in the freezer and am going to be eating very carefully for the next few days and hopefully I will see improvement.-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello Anne and welcome from New Hampshire. MC can be painful at times and I hope that's all it is. I too take tramadol (Ultram) for GI pain and it is very helpful. I do hope you get back in to see your doctor soon and can finalize a diagnosis and long term treatment plan. This can be tough at times and it will get better soon.
To start with I would encourage you like Kitty said to eat simply and softly. I would highly encourage you to cut out all gluten (wheat), dairy and soy containing foods. You may not be sensitive to all of these but a large percentage of us are and pain is one of the results when we eat these foods. As time goes on you can figure out which of these foods are causing you issues. Here is a good starters list of things to avoid:
Gluten (wheat flour) foods like breads, pastas, cookies cakes etc...
Soy containing foods, check the labels on the food package
Dairy milk, cheese etc...
Avoid citrus contains juices and foods (for now)
Avoid all raw fruits and veggies. Well cooked ones are fine.
Avoid tomatoes for now
When I started this I found simple foods like chicken, rice, well cooked carrots worked well. I also had baked fish (no breading), sweet potatoes, lamb, apple sauce. This is just a starting list I'm sure others will chime in with other good ideas and the list of things to avoid is just a starting safe place. Over time and after some healing has occurred you can then challenge your diet by slowly adding one ingredient back at a time, this way you can fine tune what your system likes and dislikes.
I hope you feel better soon
To start with I would encourage you like Kitty said to eat simply and softly. I would highly encourage you to cut out all gluten (wheat), dairy and soy containing foods. You may not be sensitive to all of these but a large percentage of us are and pain is one of the results when we eat these foods. As time goes on you can figure out which of these foods are causing you issues. Here is a good starters list of things to avoid:
Gluten (wheat flour) foods like breads, pastas, cookies cakes etc...
Soy containing foods, check the labels on the food package
Dairy milk, cheese etc...
Avoid citrus contains juices and foods (for now)
Avoid all raw fruits and veggies. Well cooked ones are fine.
Avoid tomatoes for now
When I started this I found simple foods like chicken, rice, well cooked carrots worked well. I also had baked fish (no breading), sweet potatoes, lamb, apple sauce. This is just a starting list I'm sure others will chime in with other good ideas and the list of things to avoid is just a starting safe place. Over time and after some healing has occurred you can then challenge your diet by slowly adding one ingredient back at a time, this way you can fine tune what your system likes and dislikes.
I hope you feel better soon
Joe
Sorry to hear that you are in a flare Anne. I just had a mini one and had to go back up to two budesonide a day until I feel better. I was getting down again when my husband reminded me that I am better than I was four months ago. The flare lasted less time then my last one and I didn't have to go back up to three pills this time. Still... very disheartening. Hang in there.
Leah
Leah
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Joe and Leah,
Thank you so much for your comments! It really does mean a lot - and the tramadol has resulted in me being able to cut my grass this afternoon!!
I cannot believe how debilitating pain is and how quickly I have responded today to the painkiller. I have just had to top up with paracetomol and buscapan and hopefully that will see me through to bedtime when I can take another tramadol. Hopefully I will get talking to my GP tomorrow and get sorted with the steroids. I did find the steroids a little hard going last time with cramping in my hands and feet but I do feel that to get control I need them again and then I can look at the diet! Luckily I live on my own so I am in the fortunate position to have complete control over what i eat. 
But finally today I am feeling a little more in control and a little less sorry for myself!
Anne
Thank you so much for your comments! It really does mean a lot - and the tramadol has resulted in me being able to cut my grass this afternoon!!
I cannot believe how debilitating pain is and how quickly I have responded today to the painkiller. I have just had to top up with paracetomol and buscapan and hopefully that will see me through to bedtime when I can take another tramadol. Hopefully I will get talking to my GP tomorrow and get sorted with the steroids. I did find the steroids a little hard going last time with cramping in my hands and feet but I do feel that to get control I need them again and then I can look at the diet! Luckily I live on my own so I am in the fortunate position to have complete control over what i eat. But finally today I am feeling a little more in control and a little less sorry for myself!Anne
HI Anne, You are really going through a 'rough patch' right now. I think your plan is a good one- to get back on the steroids long enough to get your nutrition going in the right direction and get stronger. I have (and still) struggle with a lack of stamina. The rapid weightloss (24 pounds for me, mostly muscle) really knocked me on my butt. I could not have made it this far without Entocort for 4 months. All of Joe's suggestions above are right on and the earlier advice from others about eating simply is definitely the way to go. I'm glad you were feeling well enough to cut your grass. Earlier you asked if MC is that changeable. In my experience, it is... in either direction. I can be feeling rough and within a hour suddenly be better. Likewise, I may wake up okay but after being up an hour I can get hit with nausea and discomfort. What you are experiencing is typical of LC/MC. But it does get better.
Keep battling,
Carol
Keep battling,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Anne,
A couple of thoughts:
a) Joe is right about diet. Do what he says and you will likely feel much better in a fairly short time frame. Figuring out the rest of your sensitivities is easier once you cut out the biggies he mentioned.
b) Cramping in your hands and feet from taking steroids isn't that uncommon. Steroids "suck" calcium and other are minerals right out of your body. You need to be sure you are getting enough calcium, magnesium, and potassium. Potassium is easy if you can tolerate bananas - eat a couple of bananas (fresh, frozen - they taste almost like ice cream, fried in a bit of coconut oil with a cooked sliced sweet potato and drizzled with a bit of maple syrup) every day. For calcium and magnesium, I take a carefully selected supplement that clearly states it contains no gluten, dairy, egg, or soy.
I just started a five-day "burst" of prednisone for my asthma, and my feet started cramping horribly. Because I'm already taking the cal-mag supplement, my first thought was potassium. Two bananas a day quickly eliminated the cramping and I am fine now. You might need a bit more if you are on steroids long-term - you can get a potassium supplement if you need it too.
Best wishes!
Deanna
A couple of thoughts:
a) Joe is right about diet. Do what he says and you will likely feel much better in a fairly short time frame. Figuring out the rest of your sensitivities is easier once you cut out the biggies he mentioned.
b) Cramping in your hands and feet from taking steroids isn't that uncommon. Steroids "suck" calcium and other are minerals right out of your body. You need to be sure you are getting enough calcium, magnesium, and potassium. Potassium is easy if you can tolerate bananas - eat a couple of bananas (fresh, frozen - they taste almost like ice cream, fried in a bit of coconut oil with a cooked sliced sweet potato and drizzled with a bit of maple syrup) every day. For calcium and magnesium, I take a carefully selected supplement that clearly states it contains no gluten, dairy, egg, or soy.
I just started a five-day "burst" of prednisone for my asthma, and my feet started cramping horribly. Because I'm already taking the cal-mag supplement, my first thought was potassium. Two bananas a day quickly eliminated the cramping and I am fine now. You might need a bit more if you are on steroids long-term - you can get a potassium supplement if you need it too.
Best wishes!
Deanna
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Deanna,
Thank you so much for your helpful comments! I have just slept 4 hours having returned from the GP who has signed me off for a further 2 weeks. She is contacting the hospital today so hopefully I will see my consultant in the next few days! I am going to make some simple chicken soup now!
Anne
Thank you so much for your helpful comments! I have just slept 4 hours having returned from the GP who has signed me off for a further 2 weeks. She is contacting the hospital today so hopefully I will see my consultant in the next few days! I am going to make some simple chicken soup now!
Anne