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Crohn's Disease Forum » Your Story » I've just been diagnosed and need advice


08-31-2017, 11:48 PM   #1
donovan.smith
 
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I've just been diagnosed and need advice

Hello all, my name is Donovan Smith and I am currently a 20 year old college Junior at Mississippi State University working towards a degree in Aerospace Engineering, and I am a member of the professional engineering fraternity known as Theta Tau. I have been diagnosed on the 16th this month with Crohn's Disease and Ulcerative Colitis. I'm currently on my third week of prednisone with tapering doses for another month and am supposed to start treatment asap next month. It's been hard transitioning and figuring out my lifestyle again especially with diet and sleep changes. Any advice will be greatly appreciated, especially if anyone can help me figure out how to sleep longer at night without having to wake up multiple times to bowel movements, if that's possible...I need advice with diet too.
09-01-2017, 05:40 AM   #2
Guerrero
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Hi donovan, the difficulty to sleep happent also to me when under prednisone.
Prednisone is usually very effective but has this kind of side effects you have to live with for few months or weeks.
I sometimes tried infusions of herbs that help with sleep, or other natural things, it helped a bit.

Regarding diet to avoid bowel movement you can try the low fodmap one if you are motivated or maybe just avoid too many fibers or fried food.

Hope you'll feel better soon
09-01-2017, 05:50 AM   #3
valleysangel92
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Hello and welcome to the forum

I notice that you say you have Crohns disease and UC, but I wonder if you mean you have Crohns Colitis? It is quite common that people get mixed up and think they have both Crohns and UK when in reality what they mean is they have Crohns in the colon. Colitis is just the general term for inflammation in the colon and can be used to describe a number of conditions. If you are unsure, it would be worth asking your consultant to clarify what your condition is, as sometimes they forget that this sort of language isn't usual to us.

In terms of diet, there isn't really a straight answer I'm afraid, some people find following a specific diet helps them and improves their symptoms while other people tend to find that its about just eliminating specific foods that are a problem for them as an individual. In general, the advice tends to be to go for low fibre, when I was first diagnosed, I was told to eat lots of protien like lean chicken and to try and eat little and often rather than eating big meals in one go. I was also told to try and eat high calorie because I was quite a way underweight. You can check out our diet section for more information on the specific diets some people have tried, but I found the best way to see what worked for me was to keep a food and symptom diary. I made a note of my symptoms before I ate, and then kept a diary of the food I had and whether the symptoms got worse (or better maybe) after eating it. I gave each food 2-3 goes before eliminating it because sometimes just eating or drinking in general caused pain rather than it being a specific food.

As for sleeping, you probably will find you don't quite have the energy you used to, partly because you're not sleeping properly but also because chronic illnesses use up a lot of the bodies energy reserves. Your body is fighting a constant battle against itself and trying to heal your guts at the same time. Steroids also disrupt sleep, so you might find that you sleep a bit better when you've come of them.

In terms of not getting up for bowel movements during the night, some people find that if they stop eating by say 6-7pm then they don't get up but that doesn't work for everyone. You might find that it settles down when things are better controlled, and starting a long term treatment might help this.

For general advice, listen to your body, if you need to rest then rest, report any new or worsening symptoms to your medical teams and do not let them brush you off. Try to read up on your condition and your treatments as much as you can, but be careful of Dr Google (lots of scare stories and incorrect information).

Ideally you should start your new treatment before you finish the course of steroids, this is because some treatments take a few months to really start to work and get to theraputic levels in the body, so it might be worth asking your team if they plan to do this. If you're taking an immunosupressant medication like azathioprine (imuran) you'll need regular blood tests to make sure that your liver and kidneys cope ok with it and you'll need to be careful around infections, you should also be offered a flu jab when on these medications.

If you have any more specific questions or anything is concerning you, please dont hesitate to ask, we don't have all the answers, but we've all been where you are now and understand how difficult it is when you're newly diagnosed
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
09-02-2017, 07:48 PM   #4
donovan.smith
 
Join Date: Aug 2017
Location: Oxford, Starkville, Mississippi

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Hello and welcome to the forum
I notice that you say you have Crohns disease and UC, but I wonder if you mean you have Crohns Colitis? It is quite common that people get mixed up and think they have both Crohns and UK when in reality what they mean is they have Crohns in the colon. Colitis is just the general term for inflammation in the colon and can be used to describe a number of conditions. If you are unsure, it would be worth asking your consultant to clarify what your condition is, as sometimes they forget that this sort of language isn't usual to us.

In terms of diet, there isn't really a straight answer I'm afraid, some people find following a specific diet helps them and improves their symptoms while other people tend to find that its about just eliminating specific foods that are a problem for them as an individual. In general, the advice tends to be to go for low fibre, when I was first diagnosed, I was told to eat lots of protien like lean chicken and to try and eat little and often rather than eating big meals in one go. I was also told to try and eat high calorie because I was quite a way underweight. You can check out our diet section for more information on the specific diets some people have tried, but I found the best way to see what worked for me was to keep a food and symptom diary. I made a note of my symptoms before I ate, and then kept a diary of the food I had and whether the symptoms got worse (or better maybe) after eating it. I gave each food 2-3 goes before eliminating it because sometimes just eating or drinking in general caused pain rather than it being a specific food.

As for sleeping, you probably will find you don't quite have the energy you used to, partly because you're not sleeping properly but also because chronic illnesses use up a lot of the bodies energy reserves. Your body is fighting a constant battle against itself and trying to heal your guts at the same time. Steroids also disrupt sleep, so you might find that you sleep a bit better when you've come of them.

In terms of not getting up for bowel movements during the night, some people find that if they stop eating by say 6-7pm then they don't get up but that doesn't work for everyone. You might find that it settles down when things are better controlled, and starting a long term treatment might help this.

For general advice, listen to your body, if you need to rest then rest, report any new or worsening symptoms to your medical teams and do not let them brush you off. Try to read up on your condition and your treatments as much as you can, but be careful of Dr Google (lots of scare stories and incorrect information).

Ideally you should start your new treatment before you finish the course of steroids, this is because some treatments take a few months to really start to work and get to theraputic levels in the body, so it might be worth asking your team if they plan to do this. If you're taking an immunosupressant medication like azathioprine (imuran) you'll need regular blood tests to make sure that your liver and kidneys cope ok with it and you'll need to be careful around infections, you should also be offered a flu jab when on these medications.

If you have any more specific questions or anything is concerning you, please dont hesitate to ask, we don't have all the answers, but we've all been where you are now and understand how difficult it is when you're newly diagnosed


I thought my GI said I had both, maybe he did just mean Crohns Colitis, but I definitely have ulcers all over the place I can see from my imaging papers. I'm currently not prescribed anything else other than Prednisone (started off at 60mg now at 40mg) and still don't know what treatment I will get. I have been keeping a food diary and it has been helping, and I've started being able to feel hungry and get real sleep again these past two nights. I've definitely confirmed by now certain foods and drinks aren't okay for me, but I was mainly wondering if there was anything that is a legit "no". I'm definitely able to sleep better if I lay flat but sort of lay against the wall with lots of pillows. Sleeping flat or on my sides hasn't helped at all.
09-04-2017, 10:47 AM   #5
ronroush7
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Everyone is different in what their body can tolerate. I hope your doctor gets you on a treatment plan soon.
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