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Exhaustation - how do I cope?

Hi, I was hospitalised in August 2012. I had been ill for 11weeks. Lost a lot of weight, stopped eating then couldn't eat due to pain in my chest and then couldn't get out of bed.

After 11 days in hospital I was diagnosed with a severe form of Crohn's that the Professor said in his 33 years he has seen 3 similar cases. I'm not sure really what makes it any different to others suffering from this disease.

I was placed on prednisone and immunosuppressant medications. I wasn't getting any better and was booked in for further colonoscopy and endoscopes. During the time these procedures where due I was moving house, trying to care for my 3 chn and I started a clean eating diet (Michelle bridges) and my symptoms disappeared. I stopped taking my medications.

I still had odd flare ups, days here etc but nothing that worried me.

Two weeks ago, I started to go down hill, lost 5-6kilos, bowel movements between 15-30 a day, exhausted beyond belief, unable to work properly or care for my children and family, social life went out the window.

I forget to mention, horrific back pain and headaches and nausea.

I took Questrian Lite for a few days which seemed to bind my bowels but I've also given up on eating to some degree. Bit of fruit here, half a salad there but the thought makes me squeamish.

My glands started to swell and I was sleeping 12+ hrs a night and than another 4-6 during the day. My poor husband and children.

Went to doctors (I have just moved so not my regular GP) who took full bloods.

Sodium and Potassium down slightly but my C Reactive Protein is 11mg/l which he says is high. He says I'm sick and whilst it doesn't say it's my Crohn's he's presuming it is. He yelled at me for getting off my meds and says I now need to front my specialist.

He wants me to start again in 40mg prednisone and I see my specialist in two weeks.

I'm scared to start the pred again if its just a bug? In people's experiences does this sound like the start of another flare up?
 
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HI AmyMay! I am sorry that you are feeling so terrible. While I can not be sure, it does sound like a flare up. If it is a bug, I would expect that you would feel better within a few days to a week.

How long were you off of your medications, having only dietary changes stop your symptoms? Was it days? Weeks? Months? It is interesting to me that you have such dramatic results with just a change in diet. It is certainly possible that the dietary changes worked for some time, but that something re-activated your Crohns and now you are back in a flare.

I would follow your doctors suggestion with regard to the short course of Prednisone, and then talk in depth with your specialist about what your concerns are about staying on medications. I do understand concerns about medications. I myself had bowel resection surgery in October 2012 and elected not to go on any medication. I know that this is not the recommended course of treatment, but it works for me. Of course, if my symptoms recur I will start medication.

Keep us posted.
-Lisa
 

afidz

Super Moderator
Hello!
Did your doctor test your iron and B12 levels? People with Crohn's are generally deficient in those areas. Your CRP being elevated means that there is inflammation somewhere in your body, a bug wouldn't cause inflammation. Talk to your doctor about vitamins and supplements that you should be taking if you are not already as its common to have absorption problems.
I would also consider changing your diet, things like fruit and salads can aggravate Crohn's. Every one is different on what they can and can't handle, so a lot of people find it helpful to eep a food diary for a few months to figure out what triggers symptoms. Generally, a low residue diet is key. A little while back there was a survey taken about the foods that people could/couldn't manage, Here is the link to that thread, it may give you an idea of things to stay away from. http://www.crohnsforum.com/showthread.php?t=17707
Its important to stay on meds even after you start to feel better. Crohn's can do a lot of damage without you feeling any symptoms, by staying on the meds you are constantly fighting against it. Also, stopping certain medications can cause your body to create antibodies against it so it wont work in the future. Talk to your doctor before stopping any medications, especially Prednisone as stopping that without a taper can be life threatening."
Prednisone is a nasty drug, but it saves lives. It can help bring down the inflammation and symptoms until you can get on another med. What were you on before? No body wants to be on meds for the rest of their lives, but its better than the other option
I hope this helps and you start to feel better
-Ashley
 
Hi Amy,

I am so sorry to hear about your struggle. I was diagnosed with Crohns 13 years ago. I had 8 laparotomies where bowel resections were done. It is very important to stay on your meds, even when your Crohns is in remission. If you are taking the cortisone treatment please remember to take Vitamin K as well. I have osteoporosis because of the cortisone treatments I have been on over the past couple of years. It is also important to go for a bone dens scan at least twice a year. Your symptoms sound like the start of a flair up, but only your doctor will confirm that for you. In the past 13 years I have learned that if I lose weight fast, the Crohns is active and fighting, along with running to the bathroom so many times. It is important to keep a diary of your food take in as well as how you coped during the day. I even keep track of how many bowel movements I have during the day. By doing this I keep track of the Crohns as well as finding out which foods I can tolerate and which not. There are stages where I can eat white bread and I will be ok, but then overnight my body decides that bread is not accepted anymore.
I understand your feeling of fatigue. I am taking Vitamin and Mineral injections twice a week and try to rest as often as possible. I am raising two little girls myself but thank God that I have a wonderful fiancé who supports me and helps me.
Are you under a specialist’s care for the Crohns?
 

David

Co-Founder
Location
Naples, Florida
Hi Amy and welcome to the community.

It sure sounds like a flare to me. Are steroids the right answer at present? It's hard to say. With that much diarrhea and a flare, you are no doubt deficient in magnesium in addition to the potassium and sodium and that can be making this worse via a big cycle.

Have you ever tried enteral nutrition? That could help get you the nutrients you need and help calm the flare until you can get in to see your specialist.

We're here for you.
 
Wow...joining this forum was the best.

Yes. I was very silly to go off my meds. I have started to come good today and have had regular BM for about four days now. I've eaten dinner, breakfast and lunch with no issues just little cramps but nothing causing me to run to the bathroom. I also am wide awake which is good.

I have started back on my calcium supplements, fish oil, and naturopath tablets (probex).

I guess I don't really understand the seriousness of this disease and because I've been this way for so long - I'm just so use to it. Obviously, August 2012 was the sickest I've ever been.

I am not looking forward to my visit to my specialist in two weeks. He isn't the most personable of fellows. He already made me feel awful when I wouldn't "stop" last year after my hospital stay and when I wasn't getting better.

I'm pretty good with my food. I know what sets me off. Honestly the clean eating diet has been the best thing I ever did for myself.

I have bought the hydra lite ice locks and have been having two of them a day since yesterday to replace some electrolytes etc.

Does anyone know if 11mg CRP is high?
 

afidz

Super Moderator
What does your doctor want to about your iron level? That is VERY low. Most doctors go for blood transfusions anything under 8, and I have seen some even go for it after it drops below 10.
 
It's in range.

5.8 umol/L (5.0-30.0)

He wasn't worried about my bloods - he only mentioned sodium/potassium being slightly low and that CRP being elevated. It's hard because I'm hopeless at asking questions, I google than worry.

Although I'm not really stressed about anything other than being annoyed I'm back on 40mg of pred again. I'm already starving due to it but so glad to have some energy back. I actually unpacked the dishwasher, put on a load of washing and swept without needing to sit down which was a HUGE achievement.
 
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