Finally diagnosed - help please!

[valleysangel92]

Hello everyone,

I've recently been diagnosed as crohns after suffering symptoms of pain, weight loss, nausea, cramps after eating and a rubbish appetite since age 15 (I'v just turned 20). Which after years of being told to take painkillers and it would all settle it self, or that it was simply all in my head, is somewhat of a relief..

I was started on prednisolone roughly 8 weeks ago to deal with some of the inflammation and have recently had vitamin supplements added as i am now severely underweight, also been told to reduce fibre and eat lots of protein, and as of two weeks ago I'm waiting for an appointment to discuss surgery at some point in the near future.

My current symptoms include achy, persistent pain in the lower right of my stomach and sharp cramping pain after every meal, exhaustion, nausea and frequent headaches and joint pain. I currently spend most of my time at home resting and find the simplest task exhausting, even sitting with family for a few hours.

Although it is a relief to finally have a diagnosis and some sort of treatment, I find myself a little swamped and would very grateful for any little hints and tips for dealing with things while I wait for the doctors.. for example, any suggestions for symptom management? Is there anything more that i could be doing for myself?....

Thankyou!

 

[acheallova]

Welcome to the community valley, we're glad you've found us.
I was in a very similar situation, decreased weight, major fatigue etc....
First, most find comforting a heating pad, hot water bottle, or hot soak in tub to help relief some of the pain. For calming tummy, there is ginger, peppermint tea, licorice tea, camomile or herbals which a lot use if not on something for nausea symptoms. As for the weight loss, supplementation is recommended like ensure/boost AT LEAST once a day but sounds like you may be at the point of 3-4 /day for while. For the first 5 months i was on all liquid diet- soups, broth and gatorade ( very important to stay well hydrated).
Some useful ideas are keeping a journal of 1. Food intake- how it affects you, 2. bm's per day, blood content, consistency and frequency 3. Pain-rated on scale of 1-10 4. Stress level ( same scale) cause it has a huge effect on our symptoms.
As for fatigue, that's a tough one, we all need to adjust to that individual. I spent the first 3 months in bed, thank goodness my kids understood enough to help out.
Again, I'm glad you found us. This is a great place to vent, find support, laugh, cry and enjoy. We can all relate in one way or another and offer guidance to great resources. Best of luck. Glad you had a diagnosis, this is the first step to making a plan for treatment and hopefully a path to remission.
Keep us posted!-hugs-

 

[spencer2012]

hey sorry to hear youve ended up here with us lot lol. im afraid to say you have a very long road ahead of you now but believe me once you have this mastered it does get easier. the cramping in your lower stomach will be caused purely by your inflamation which may at this time be quite narrow. (hence the maybe need for surgery).exhaustion is caused by malnutrition due to the lack of appetite and desire to eat larger meals, normally because of the pain it causes. joint pain can be associated with the preds (steroids). make sure you take ADCAL vitamins with them to counter the affects of bone weakening (osteoparosis). also be prepared for the adjustments in meds until they find the right tablets and balance to suit your needs.
heres some tips: try smaller meals more often but try things like mash potato and things that are easy to digest to counter the pain. avoid nuts and things alike. avoid fiberous foods and veg like cabbage as these can add to the risk of blockages. if you smoke, pack up now. crohns loves smokers.
next is arm yourself with all the info you can about crohns. read read and read more. knowledge is power. run tests on what foods make you ill then keep a diary and cross them off your list as you go until you have a positive list of "bad" foods. its called the elimination diet. remember that a lot of nutrishious foods are off our menu so whats good for most can be bad for us. research this as it will help. i know its time consuming but believe me, in the long run itll save you a lot of pain and guess work. you can dine out with confidence. most of all, dont be embarrassed by your symptoms. you didnt ask for this so youve nothing to be ashamed of. it is now a part of your life so take it seriously and treat it with the respect it deserves and youll soon find its perfectly possible to live side by side in harmony. if you have any specific questions then just ask.

 

[Hope345]

Welcome to this forum, where you will find so much support and information.
You have been given such great advice already and the only thing I might add right now is to remove lactose from your diet.

Also stop taking any ibuprofen, aspirin or any anti inflammatories, as they can cause more problems.

wishing you the best

 

[spencer2012]

absolutely julie. great tip on the ibuprofen too. in fact id say steer clear of any codiene based pain relief for now and understand that as effective as tramadol is, it can slow down your stomach and cause constipation. if this happens dont take strong laxatives out of frustration. one 5 mg spoon twice daily of senna is my solid opinion. gently helping not forcing it out.

 

[valleysangel92]

thanks all..

Yes i find heat good too .. I have been perscribed supplements as part of my treatment, although these are twice a day due to the vitamin A content, any reccomendations are most welcome .. I also have to stay away from too much calcium as i have too much of it in my bloodstream, my consult has written to a colleague of his to enquire about meds to help me absorb that calcium back into my bones ..

Spencer you mentioned research, are there any specific sites that you would recommend? the internet is so full of misinformation these days

well currently im being perscribed cocodamol by my gp.. but im not having any problems in that department .. would you recommend getting this changed anyway?

 

[spencer2012]

if cocodamol isnt causing you any grief now then theres a good chance youll be ok with it so if its working then no, do not change it. ive just found a lot of people suffer with this and buscapan but everyone is different. a good site is the obvious, wikipedia but forums such as these are the best because they are built by real sufferers with real advice. never take one explanation as gospel because if anything with crohns was certain theyd have cured it by now. listen to all the options, research each until you can dispel or encourage each one then see if they coincide with any of your symptons. it doesnt hurt to try as long as it only involves shifting diets etc. do not mess about with your own meds dosages by any means. if i were you the first thing id do is heed julies advice above and find a lactose free diet. i think youll be pleasantly suprised by the results

 

[acheallova]

ParMed is another documented good source of information, as is Mayo clinic or John Hopkins University articles. Steer clear of sites that say .com or web md as they can be mis-leading. Good luck!! Keep us informed on how you get along. -hugs-

 

[David]

Greetings and welcome!

Could you please list what vitamins/minerals they have you on?

Based upon everything you described, I'm guessing you are severely deficient in magnesium and vitamin D. Did you have your vitamin D levels tested (if so, what is your level?) as I theorize deficiency in it is why you have high levels of serum calcium. From the Linus Pauling institute:

Maintenance of serum calcium levels within a narrow range is vital for normal functioning of the nervous system, as well as for bone growth and maintenance of bone density. Vitamin D is essential for the efficient utilization of calcium by the body (1). The parathyroid glands sense serum calcium levels and secrete parathyroid hormone (PTH) if calcium levels drop too low (diagram). Elevations in PTH increase the activity of the 25-hydroxyvitamin D3-1-hydroxylase enzyme in the kidney, resulting in increased production of 1,25-dihydroxyvitamin D. Increasing 1,25-dihydroxyvitamin D production results in changes in gene expression that normalize serum calcium by (1) increasing the intestinal absorption of dietary calcium, (2) increasing the reabsorption of calcium filtered by the kidneys, and (3) mobilizing calcium from bone when there is insufficient dietary calcium to maintain normal serum calcium levels. Parathyroid hormone and 1,25-dihydroxyvitamin D are required for these latter two effects

If I'm correct, proper supplementation of vitamin D should normalize your serum calcium levels. Magnesium may help as well because it is required for calcium and potassium ion transport across cell membranes.

 

[valleysangel92]

Greetings and welcome!

Could you please list what vitamins/minerals they have you on?

Based upon everything you described, I'm guessing you are severely deficient in magnesium and vitamin D. Did you have your vitamin D levels tested (if so, what is your level?) as I theorize deficiency in it is why you have high levels of serum calcium. From the Linus Pauling institute:

If I'm correct, proper supplementation of vitamin D should normalize your serum calcium levels. Magnesium may help as well because it is required for calcium and potassium ion transport across cell membranes.

Its a multi-vitamin which has all the vitamins in it except for calcium.. I have a hereditary condition which causes my calcium to be high, its called familial hypercalcuric hypercalceamia and it means that the 'calcium detector' in my body doesn't function normally and therefore doesn't stop me producing the hormones that trigger the absorption of calcium into my bloodstream... so my calcium is always higher than what would normally be considered as normal, but as my body has adapted to function with this level, it doesn't pose a threat, provided its not allowed to go too much higher

 

[valleysangel92]

And unfortunately im not sure what my vitamin d levels are, but during my last consultation my Dr said.that all the bloods I'd had in the past few months had been normal. I've been started on the supplements because of the instruction to eliminate fruit and veg