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Crohn's Disease Forum » Support Forum » Vent Away » Want to come off the meds!


06-30-2013, 08:05 AM   #1
Riptikka
 
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Want to come off the meds!

I was diagnosed with C.D March 2012, and diagnosed with R.A Feb 2013. I was always sick, for years...flu, virus's, etc. I was actually relieved when I was diagnosed as not knowing what was wrong with me was half the battle.

I take Salofalk 3mg (2 sachets) daily and the last colonoscopy (April 2013)showed improvement. After experimenting with my diets, and failing alot, I removed Coca Cola (which I used to see as a reward), and coffee. I was having at least one of them every day. I had been under the impression to avoid fruit and veg. I read on here about the fruit smoothies, so I started having smoothies every morning. Strawberries, banana, watermelon, mango, natural yoghurt and apple juice and making more veg soups blended. Gazpacho is perfect also. The difference since doing this alone is amazing. I was also told to do (light exercise) but to try and avoid it in general. I had been doing Pilates but Iv now increased that and started an exercise programme, that gets you fit, gets you stronger and builds your core muscles.This has been a massive help on reducing my pain inflammation. I literally have no more pain in my muscles and joints. If the R.A can be reduced, so will my C.D flares up as they feed off each other.

I have noticed a massive improvement in my quality of life...however my moods and overwhelming feelings of depression still creep in. I used to be the most positive, outgoing selfless person you could be, and that has gone. I have these moments a few times a week. It is the one thing I have struggled to accept and each time I feel I am moving on, I will have an outburst, usually at my poor boyfriend. I get very agitated, impatient, depressive and aggressive. The complete opposite of who I was 2 years ago. I no longer take Steroids so not sure if it is the Salofalk or the disease. The info on the drug doesn't touch too much on it.

I would hate to think these moods are something that I have to accept as part as having C.D, and really want someone to tell me its the meds...so I can look forward to having that moment of feeling like me again. It breaks my heart to see my boyfriend of 13 years and family look concerned for me. My close friends see it and more importantly I see it. I will make an appointment with my doctor but each time I go she is just happy that the disease is not progressing, which is right enough...but then she doesn't live me with me daily and Im sure if she saw me having one of my frequent eggy moments she would review the meds.

The idea of removing the moods and feelings of depression would be me getting my life back. This would then get my relationship back 200%. I urge you all to do exercise,Pilates is the best way to start!Eat fruit smoothies and pureed soups and I promise you will start to feel good again. I went from feeling like death to having the most energy I have had in 12 years. I just need to find help with the moods! Any advise is greatly appreciated.


Last edited by Riptikka; 07-02-2013 at 08:03 AM.
06-30-2013, 08:18 AM   #2
UnXmas
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I haven't any experience with Salofalk, but from what I've read of it it's not known to cause mood problems. Having a chronic illness can lead to you feeling more depressed, but if it is having Crohn's that's causing your depression that doesn't mean you'll always be depressed, even though you'll always have Crohn's. Have you thought of trying medications to deal with the moods and depression?

The benefits of diet and exercise for Crohn's vary a lot for person to person. Particularly when someone's flaring badly, the fibre in fruit can be difficult to digest, which might be why you were advised to avoid it, but if it's not causing you problems, there's no reason at all not to eat it. The same with exercise - if someone with Crohn's is very underweight or lacking energy, it's sometimes better to rest, but many people with Crohn's can still exercise. It really is about finding what suits you best.
06-30-2013, 10:35 AM   #3
Riptikka
 
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I can only eat the fruits in smoothie form, otherwise Im crippled for a few days. I want to try possibly coming off the meds but obviously scared to in case the Crohn's progresses. I was 45kg's and thankfully now starting to build myself up more with the exercise. I tried to monitor the moods with what I had eat or drank...but it seems more apparent now there is no routine or trigger. I can accept most of it and so can by my boyfriend...but the mood swings and outbursts is something that I cant seem to have any control over. I am willing to try something for the moods/depression, but would like to get some suggestions from anyone who has tried and improved.

Thanks again :-)
06-30-2013, 11:02 PM   #4
Jennifer
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Hi Riptikka and welcome to the forum!

Before you decide to go off meds completely (which I don't advise doing as it helps keep inflammation down and controlled, not that Mesalamine is the best med out there but if its helping then all the better) I suggest that you get your vitamin levels tested. People with Crohn's don't absorb nutrients very well due to inflammation, scaring etc. Its awesome that you're eating healthy but that doesn't mean you're absorbing all the nutrients your body needs. Even being low in certain nutrients can bring on symptoms of a deficiency and believe it or not depression is a possible symptom of a vitamin deficiency. Have all your vitamin levels tested via blood work (Vit D, B12, Iron, Potassium, Calcium, Magnesium, zinc etc just to name a few) and if anything is low you can start supplementing the right ones. Retest after a month-3 months to see if its helping and adjust the dosage if need be. http://www.crohnsforum.com/wiki/Vita...l-Deficiencies While you're getting blood work done have your CRP tested (checks for inflammation since you said eating raw fruits will cripple you for days) as well if it hasn't been done in a while.

Keep us posted.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-01-2013, 04:38 PM   #5
Riptikka
 
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Thanks Jennifer! I get better advise from the forum than from my own specialist. She is great and very experienced, however as she has obviously seen worse cases, she is very reserved with life advise. I appreciate we all have to try different things as all stages vary, and I am still learning each week myself. My mum died at the age of 51 so I will not make the same mistake at not looking after myself. Diet and exercise seems to be my saviour at the moment. I take Vitamin D, Vitamin B, Vitamin Q10 and Glutamina, however not each day otherwise I get severe leg cramps from the magnesium. But also as you say, its a vicous circle as my body wont absorb all the good stuff.

The fatigue makes me crabby and agitated, which seems standard...but the moods, the depression and the resentment is something I have to get help with otherwise Im going to lose my boyfriend and my mind. Thanks again for the post. May I ask what brought on your flare up? I hope you feel better soon. Lots of hugs :-)
07-01-2013, 09:40 PM   #6
Jennifer
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There was no change in medication or diet etc but I did start having symptoms again after I became a caregiver for my grandpa after his massive stroke on Dec, 24th 2010. My grandparents are not pleasant people to be around and my grandpa did suffer some brain damage from the stroke so in all honesty I think it was mainly stress that triggered my most recent flare. My grandparents asked me the same question today and all I said was, "stress" when really I just wanted to scream, "YOU DID!"

Stress will always be a major issue so do your best to avoid it if possible.
07-02-2013, 05:22 AM   #7
Riptikka
 
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Ah Im sorry to hear that. Absolutely, as soon as I am under stress in my relationship I suffer and sometimes think I would be better on my own but I know this is not what I want. Sometimes I get stressed at being stressed. If I knew there was a pill out there that wasnt prozac or valium, I would happily take it if it would stop these bouts of depression and anger.

Stress really is a killer, and I have vowed to make sure I come 1st now...make sure you do the same. If they cant see that its not your fault!
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