Quality of life questions...

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Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/27/2009 10:52 PM (GMT -6)   
Hey all, I'm new to this site. I've read the forum a few times in the last half year for support. Thanks for the posts. I really hope the lady that just lost a husband to a heart attack is doing okay.

Anyways, I am a 24 year old guy and have had UC since spring 2003. The disease is left sided and in the moderate category. The inflammation and ulcers in my disease are right around the top bend on the left side, with a healthy rectum. They have never ruled out Chron's Disease, but the disease has never moved anywhere else that I can remember. I've never had to go to the hospital for a flare, but seem to experience a flare every fall for some reason. I've had to take prednisone during three different flares. I am on Pentasa 250mg pills, 16 a day. I also take 100mg of 6mp every day.

I am in general able to work and be social, maybe needing to use the restroom 3-5 times a day... mostly in the morning and evening. I have only had a few instances in the last year where there has been blood, and with rest it seems to go away, unless I'm flaring. My main symptoms are frequently recurring pain, usually dull, and extreme fatigue.

My question is about quality of life. I am concerned with my lack of energy. I don't know if it's due to the 6mp, the disease itself, or stress/depression from dealing with the disease. I can sleep 10 hours and be exhausted. Sometimes I feel like someone/something sucked the life right out of me, to a point it just hurts to be so worn out. I really question the 6mp in this instance. I don't respond very well to just the 5-asa (I think that's what they're called... pentasa, asacol, colazal and such) drugs alone. My GI doctor has said the next thing would be remicade, since I even flared while on the 6mp. I'm not going that route. I was hoping someone with some experience might be able to at least understand what might be causing the fatigue (such as the 6mp which I've been on for years), and what I might try to regain my energy and enthusiasm. I'm getting concerned lately because I have no energy/ambition to date, yet really want a relationship/marriage some day.

A couple other questions:
-I find when I get worn down enough, I have frequent down moods. Do IBD sufferers sometimes find that an antidepressant helps? (During two different flares I went to counseling, as the prednisone seems to make me completely bi-polar)... but I'm more wondering about the general wear and tear on a person's mental health from dealing with IBD.

-I have never made surgery an option in my mind... but am beginning to see the benefits that it could possibly bring to my quality of life. I don't necessarily like the idea, but if I could have my energy back, and kick the meds and all their side effects it might really be something I should think over. I think I would only do it if I could have the surgery that creates an internal pouch. Have any of you either had that or seen it in someone else? How substantial was the difference in their lives?

-One last quick question. Just tonight I read something relating the acne drug Accutane to IBD. I took that drug prior to being diagnosed with IBD. Are there any credible articles on the net that might lead me to know something about that situation? I'd almost prefer to think my disease was inevitable, rather than that a drug not completely necessary to my life caused me so much suffering. Is there anything I should know about that situation?

I know this is a long post... thanks for bearing with me. I am at home feeling really burned out lately, and looking to change some things in my life. I'm taking some time off work to try to build some energy up, and thought I'd see if anyone on here had anything to contribute.

HoldingHope

Moderate UC, left sided
Diagnosed in 2003
Meds: 250mg Pentasa 4 pills 4x/day. 100mg 6mp/day.

kate22
Regular Member


Date Joined May 2009
Total Posts : 227
   Posted 7/28/2009 12:11 AM (GMT -6)   
Welcome HoldingHope!
I have gone the prednisone route 3 times and have been on 5asa's since my diagnosis.  I too have experienced what you are talking about: the fatigue and extreme depression.    personally, i think it comes from a lot of things.  For me, the pred, its side effects, and the disease are stressful and do make me extremely depressed at times.  i just try to talk to myself, or i get on the forum on this website to find support.  depression can definitely fatigue a person.  additionally, i think the UC causes fatigue.  prednisone makes me extremely tired too, and i've heard that 6mp can make you tired.  another thing to watch is your iron level.  you might want to get that checked.  i have had problems with that in the past, and that can definitely bring on fatigue.  unfortunately, i don't have any advice to increase your energy level!  just try to prioritize and balance your life as best you can.  and put yourself and your well being first!  hope that helps!
 
UC since 1994
4 Lialda/day, 15 mg prednisone and tapering (down from 40 mg), rowasa, folic acid, VSL#3, flax oil, vegetarian diet


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/28/2009 12:29 AM (GMT -6)   
I have had colitis for 15 years now and have tried many different medications but with little success.

Pred makes me extremely anxious and totally out of control and unable to sleep. Pentasa makes me vomit. Asacol gives me extreme headaches and tummy pain. I am currently trying asacol foam enemas but have trouble retaining.

I have trouble with anxiety, tiredness and feeling down. I put this down to colitis which is very much a mental disease as a physical one.

Next step for me since I have basically had 15 years of untreated colitis is either surgery to regain some quality of life as I refuse to have remicade or 6mp. I don't do well taking meds so it's either surgery or diet.

Have you tried a change of diet? I am looking into the specific carb diet or the IBD remission diet and I know a few people on this forum are trying the raw food diet.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/28/2009 5:13 AM (GMT -6)   
Mercury28,

Try the diet frist. Thats what I am doing. If it doesnt work then you havent lost anything infact you have gained knowledge about yourself. diets take a wile to work and you cant expect them to work immediatly and be off all your meds in a couple of weeks. You need to give them time, some people I have spoken to have done it in weeks,some in months, 1 peson waited 6 months

So far this week for me no mucus no blood. I am still though using 1 asacol and 1 pentasa. at the moment I have no need to move up or to take any other meds. it is worth the experiment. and if it fails on me then I will make a dicison on surgery or not.

If you never try you will never know and not knowing is will just leave you in a situation forever thinking what if.


if you want follow my progress on rawfoodsupport.com

you can speak to rawdanceruk who had chrones and now has no more complaits. You can speak to Paul Nison he also is glad to help you get started on a diet.
The weird thing about the raw foods diet is that i used to worry about cancer. I used to look in the mirror and think that this is going to happen to me. This has been decreasing as I have been on the raw foods diet. I have become less afraid of cancer. Next time i see my specialist I want them to check my colon, I want to know what it looks like because at the presnet im not in pain.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/28/2009 6:07 AM (GMT -6)   
Holding Hope, I do feel for you.  I am 56 years old and have had IBD for 25 years.  Have been in and out of remission with the most recent long remission lasting 5 years.  Have been in a flare-up for the past 6 months and it is progressively getting worse.  Am now on colazol (9pills a day), mesalamine enema once a day and 75mg 6MP.  This is after 6 mos of numerous other meds.  I lead an active life and work but this bout has really knocked me out.  Couldn't leave the house and get to work until 10-11 AM and was tired, cramping, in the bathroom between 8-17 times in the morning with BM's, diarrhea, blood, mucous, terrible urgency... and a few times during the day.  I finally had enough and scheduled an appt w/ a nutritionist for this Wednesday.  In the meantime, I took matters into my own hands and concocted my own diet.  As of 3 days ago I cut out dairy, gluten, fried food, caffeine, alcohol, fruits and vegetables except for bananas, potatoes and steamed carrots and I drink lots of water.  Well.... in less than 3 days there is a huge improvement.  Have only had 2 BM's a day for the past 2 days and the bleeding... is reduced.  Not as fatigued at all.  It's amazing- I fell like a different person.
Regarding depression, it's no wonder people w/ IBD feel depressed.  I think it's foolish to not go see a therapist... to talk about this and perhaps get medication.  This is a physically and mentally debilitating disease.  Please talk to someone and maybe, try a new diet.  Good luck and I'll keep you updated as to what the nutritionist says.

Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/28/2009 6:37 AM (GMT -6)   
See thats great. jewelknit, Im all for try the diet first. i would rather know than not, and if I end up getting surgery then well at least I have tried everything I could. i have noticed a differnce in my BMs. On the raw foods diet they are all formed. and appeantly that is what is suppose to happen when you do raw foods. I suggest trying SCD or raw foods. all these diets are is going back to are Ancestrial days. What did we do before we leaned to hunt (we just ate leafs and fruit and bugs actually) when we learned to hunt we ate meats and raw vegetables, but we didn't have cookies and soda pops. we didn't drink coke to make us feel better. So my question is why do we feel like we need those products. Why do people feel like they need a large cooked dinner like pasta. I do still crave these foods but Im learning to live with out them, Im really trying.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 7/28/2009 6:47 AM (GMT -6)   
     I am on 100 mgm of 6MP and experience fatigue too.  The prednisone makes me sort of loony,..mood swings, etc, terrible insomnia.  Right now my prednisone is tapered down to 30 mgm.  My ulcerations are in the rectum and very stubborn to treat.  Unfortunately, the doctor said if it were a matter of just cutting out that tip of the rectum and giving me a colostomy bag was the answer, it would be a cinch.  However, with UC, the ulcerations could travel further into the colon and therefore, they recommend a j-pouch operation.  At my age and other health issues, it is quite risky.  Remicade is NOT an option for me either.  My other meds are nine Colazal a day, Cort enemas nightly and Canasa suppository in the morning.  I am noticing a bit of improvement.  While flaring I stick to a low residue diet.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/28/2009 7:16 AM (GMT -6)   
What I don't understand is why don't doctors treat with diet first. If they had i would not be on meds at the present. i never used to have to take them all the time. I only used to take them when I saw a problem, now i struggle to get off of them. They should start with the SCD diet and also the raw foods,and give support classes to get to grips with them but insted the government spends loads of money on to get you to grips with meds.

SCD and raw foods works for alot of people. It doesn’t work for everyone but it does work for alot of people. and if they caught the disease early then it would help thousands.

I spoke to a dietician before I did this diet. She said I would become deficient and I would get all sorts of troubles like osteoporosis. I thought about this logically. if I don't try it I will get that anyway through the meds. I may already have osteoporosis, i don't know. but anyway my bloods came back completely green. She was worried about my iron levels with this diet, but my iron was normal, last blood test it came back low and I had inflammation, that was on the regular diet.

Im starting to question what the doctors know and don't know about diet. Why is it that we all improve if we leave out certain foods in our diets. Not just a few of us but all of us. Ive seen it time and time again on this form. I stop eating dairy, I improve, i stop eating gluten I improve. I don’t know Im confused. I hope this diet works for me. I cant guarantee after only 6 weeks but I really hope so. I love raw foods I find it exciting different and new, no one takes a journey on this raw foods path often, so I will see. Im taking a journey. And I want to keep you guys updated. Everyone on healing well gave me so much support in April when I had my really first bad flare. I was so scared. Im so glad people like doctor A, pd4 and others were here to support me. I really would have felt all alone if I didn’t find this page.


Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/28/2009 8:25 AM (GMT -6)   
Thank you to those that have replied to my post. I have never fully pursued a diet change. I stay away from most fried foods, and know alcohol makes my disease worse... so I stay away from that 99% of the time. I've found probiotics helfpul. I might start trying different things, leaving out one type of food and see how my response is.

I do think the 6mp has an extremely fatiguing effect on me. I dropped it from 100mg to 75mg last week, and found myself having more energy. I'm not sure if that was due to the drop or not, since I'm not sure how long it takes for the level in your system to go down. Unfortunately, my colon started hurting. Go figure lol. I'm putting some time into researching all these things, and am probably going to meet another doctor for a second opinion on things. I fully trust my current doctor, but it never hurts to see if someone different has a different view. (I have a recommended doctor to see, through a relative's friend with the disease).

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/28/2009 8:31 AM (GMT -6)   
Have you ruled out chronic illness anemia or lack of B-12? Both conditions can be checked with a CBC. In my last year of UC I suffered with both of those conditions and I was extremely fatigued. UC alone can sap your energy levels but I'm not sure about the meds playing a role. I was on 6mp, varying doses of pred, Asacol, levsin, levbid, and nortriptylene but I don't recall any of those contributing to my fatigue. Anyway, I was much more ill than you and ended up having surgery. It took about a full year to regain my pre-UC levels of energy. I feel for you; quality of life issues was one of the major reasons I had surgery. However, meds had failed me too.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/28/2009 8:37 AM (GMT -6)   
B-12 is extremly important to get checked. Mine was fine on my last blood test. I take supplements of B12 I get everything checked on my bloods. and if I qestion it I will reserach it myself then ask the doctor what he thinks. Minerals are important to have. You can get b-12 injections if your low.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/28/2009 8:47 AM (GMT -6)   
I have not ruled out either the anemia or lack of b12 as issues. Those are things I'm looking for, options that it might be. I've always been of the opinion that my disease is not nearly as severe as many people's, which I'm grateful for. However, it seems to be a persistent form of mild/moderate UC. I'm trying to find some middle ground where I can control it while having energy... at least half the time.

Above the UC and 6mp, I have burned myself out lately I think. I am too good at pushing myself to work and take care of things. I think it can catch up with a person.

Has anyone looked seriously into meditation/calming the mind to help with anxiety and thus lower UC activity?

jewelknit
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 7/28/2009 9:11 AM (GMT -6)   
After speaking with people and comparing notes I think sometimes the degree and extent of IBD may not mean that it's worse than a milder form.  I have ulcerative proctitis that has moved a bit into the sigmoid but it seems my symptoms are a lot worse than others.  My doctor can't understand it.  Don't think that just because your IBD isn't as severe as others' (in name) that your symptoms, complaints and problems can't be more severe.
Regarding meditation, yoga... it certainly can't hurt and has really helped many people with many problems.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/28/2009 11:42 AM (GMT -6)   
Hellokitty said...
What I don't understand is why don't doctors treat with diet first. If they had i would not be on meds at the present. i never used to have to take them all the time. I only used to take them when I saw a problem, now i struggle to get off of them. They should start with the SCD diet and also the raw foods,and give support classes to get to grips with them but insted the government spends loads of money on to get you to grips with meds.

 

Traditional allopathic doctors are generally not trained in dietary modifications. Their training is in meds and surgery and these are the things that are supported by expensive clinical studies. Most doctors have spent little or no time on nutrition and diet in med school. Pharmaceutical sales reps are pushing their products with perks and giveaways. In addition, doctors fear malpractice if they give a patient any advice not supported by aforementioned studies.
 
HoldingHope, "unusual tiredness" is one of the side effects of 6mp that patients are instructed to report to their doctor. Have you discussed your fatigue with him/her? Have you been tested for anemia? This is often a cause of fatigue in IBDers who are bleeding.
 
You might consider meditation, yoga and/or regular exercise as a positive, non-drug approach to improving your moods and lifting depression.
 
Credible articles linking accutane to IBD? How many would you like to see?
 


Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 

Post Edited (princesa) : 7/28/2009 11:53:24 AM (GMT-6)


Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/28/2009 12:36 PM (GMT -6)   
I've discussed fatigue to some degree with my doctor before, but never about whether the 6mp was causing it. It's a catch 22, at least until I figure out a diet/or another drug that works. The 6mp seems to work fine, but wipe me out. I plan on talking with the doctor soon, and seeing if I can try some time off of the 6mp to simply find out if it is in fact the drug fatiguing me.

Is that sulfasalazine drug similar to the pentasa, asacol and such? When I was young I had a possible allergic reaction to a sulfa drug and have not touched any since.

What do you eat, if you don't eat grains or dairy? That leaves veggies, nuts, fruit and meat.... right? I'd find it hard to get enough food just eating vegetables, and think limiting meat intake is a good way to keep healthy (at least for a normal person).

Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/28/2009 1:36 PM (GMT -6)   
You say that your illness is not as bad as others. That is how I used to think. Ive never been on 6mp and have only taken 2 pentasa tables at the most in 1 day. This is the problem with UC it doesnt matter how bad your symptoms are the UC spreads and gets worse. I learnt that when my pentasa was failing. At first my symptoms were so mild i coulndent understand why the doctors looked so sad when they were speaking to me. Then I got a bad flare in April. I went to the loo about 20 times, There was no blood though and no mucus. Anyway i knew that the desease got worse.


I can tell you what I eat if you want! but remember Im not giving advice. im too new to raw foods. but i can tell you I found fruit gave me D when I ate a sandwhich with it. and when I eat it on its own im fine. Also with vegies I found that when you cook them to a pulp they just go strait through you. When you eat them raw they firm the stool.

I had two BMs today both really firm stools no blood or mucus.


If you want advice on fruits and veggies talk to superinfinity on www.rawfoodsupport.com . They can tell you anything you need to know. Its what they study day in and day out
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/28/2009 3:15 PM (GMT -6)   
I agree with the suggestion that B-12 might help, the shots seem to especially do a lot of good. If you are anemic, you are probably cold a lot, too.

(Personally, I think the raw food diet is a crazy thing to do to an inflamed gut).

If you google Accutane and ulcerative colitis, you will find information about the litigation. I tried to join it, but my records were destroyed because it's been too long (I took Accutane in the early 1980s and had UC by 1985). I think I read there was a settlement offered, so act quickly. You just need to pick a firm (they all work together), fill our their questionnaire, then they will contact you. No amount of compensation is worth having this disease, but it will keep the drug companies honest. good luck
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/28/2009 5:03 PM (GMT -6)   
Thank you. I am going to talk with my GI doctor next week about things. There is a fine line that I want to try walking, where I limit my meds but don't ignite a flare of UC.

I was also kind of wondering about the raw food effecting an inflamed colon. I've been trying to learn how to eat a better diet. Cutting refined carbs is something I'm going to try now.

As far as the accutane goes, I'm still in a little disbelief about that. I was on it somewhere around 2000-2002. I can't really remember much about that, but I started having IBD symptoms in 2002 and was diagnosed in 2003. I'll be looking into this... in a lighthearted way. Thinking "what if" is not going to help me here, though it's so natural to do.

Thanks Again!

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 7/28/2009 10:06 PM (GMT -6)   
A word of caution on the SCD.  It needs to be followed 100%, which virtually makes eating out impossible(except for buffets).  I too am in the midst of a flare and on cortenemas to help with the symptoms.  I am almost out of this flare considering it is my 4th week. 
 
Quality of life when I'm flaring is zero.  It sucks, and I feel chained to a toilet. 
 
Why us???
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 2127
   Posted 7/28/2009 10:33 PM (GMT -6)   
Congrats on being a pharmacist... ironic as it may be that you refuse medications lol.

I find the "why me" mentality makes me feel worse. However, I do get depressed about essentially being trapped with a disease. Sometimes I try to look at the positives. I was diagnosed right before I started college. That led me to wanting a simpler lifestyle, so I strayed from college and started/evolved a business with my dad. It got me into a home that's almost paid for now, and a flexible career that allows me rest should I need it. Who knows where I might be if I hadn't got UC. Would I trade everything for a healthy body? YES. But all I can do is make the best of what I have, which is what I'm trying to do.

I'm curious about your refusal of the heavier drugs. Did you simply suffer away until you heard of the SCD? Were there any alternatives that worked for you?

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 7/28/2009 11:50 PM (GMT -6)   
I have suffered from UC in the classic sense, but it got progressively worse last year.  I was faced with prednisone not working, and being put on 6-mp. As a pharmacy student, I was exposed to tons of information about this drug and knew that I didn't want to be on it. I was also given the option of Remicade, also which I refused.  As with many patients, the prognosis really isn't that great.  A number of us will be faced with either surgery or stronger immunosuppressants.  I wanted to find alternative treatment, and get to the root cause of my disease.  The prednisone, 5-ASAs, and 6-mp do not do that. 
 
Unfortunately, physicians and pharmacists aren't taught this in school.  It's all about prescribing and taking meds for your ailments. 
 
The SCD has worked for me, but only when I follow it with fanatical adherence.  I'm on my way to remission again, and realize that I can't cheat on this diet.  It sucks but it better than being so sick all the time.  I am all for people treating their UC with medications.  It's an individual decision that everyone has to make. 
 
 
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


tap
Regular Member


Date Joined May 2008
Total Posts : 474
   Posted 7/29/2009 5:18 AM (GMT -6)   
You may want to have your vitamin D level checked as well. I started taking Vitamin D3 back in January and it eliminated my weekly mood swings. See http://grassrootshealth.net/ for more information on Vitamin D3. I had my vitamin D level checked a couple of months after taking 5000 IU of vitamin D3 daily and it still was low so it takes a fair amount of time to get back to an appropriate level.
43 - male
Flaxseed (2 tablespoons ground) - once per day; Vitamin D3 - 5000 IU once per day;
Asacol - 2 400mg pills 3 times per day
Diagnosed with pancolitis about a decade ago


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/29/2009 6:28 AM (GMT -6)   
blueclassring-its the same with the raw foods. i ate some really sugary salad dressing and it almost made me go into a flare. i cant have refined sugar any more. I went back on pentasa as I haven’t been doing raw foods for very long i was worried I would have a flare. but now every thing is fine again.





HoldingHope - raw foods are the softest thing for your digestion. Things like raw sweet fruit and lettuce. I also eat smoked salmon. I make things like zucchini pasta which is finely grated zucchini. The only ones i do find a bit hard are things like broccoli raw so I steam it lightly. I also drink rice milk with calcium. So far my experiences have been the opposite thing to what the doctor tells me. I went to a dietician and they said raw foods are bad for people with UC, but I told them I tried it and I was fine, im not sure if they really know to be honest. But saying this you know your system, you know what you can handle, and you know your system better than any doctor so trust yourself.

I had an interesting experiment yesterday. My husband went to the pub with out me he had a kebab, with chips- which is a lamb meat thing in pita bread and then French frys. I said to him I bet your poo was a big cow patty this morning. He said it was- so someone with a normal colon still gets unformed poos by eating chips and fryed food. I thought about this as I have seen doctors recommend this food to firm up stools. I have a feeling that these foods- greasy fried foods do the complete opposite and not just to us but to people who have normal colons like my husband. What do you think maybe im wrong im just analyzing at the present
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/29/2009 8:12 AM (GMT -6)   
HoldingHope said...

Is that sulfasalazine drug similar to the pentasa, asacol and such? When I was young I had a possible allergic reaction to a sulfa drug and have not touched any since.

What do you eat, if you don't eat grains or dairy? That leaves veggies, nuts, fruit and meat.... right? I'd find it hard to get enough food just eating vegetables, and think limiting meat intake is a good way to keep healthy (at least for a normal person).
Yes, sulfasalazine (azulfadine) is the older ASA that includes a sulfa component.
 
What do I eat? Scrambled eggs, baked, broiled or grilled chicken and fish, turkey, ham, beef, squashes, peppers, broccoli, cauliflower, limas, English peas, green beans, veggie soups with my own chicken added, chicken salad with pecans and grapes, bananas, flavored applesauces, mixed fruit in light syrup, baked apples and pears, peanut butter, other nut butters, butter, olive oil, limited beans, hummus. It's a big shift from the way most of us ate growing up, but believe me, there's plenty to eat and it's a very healthy way of eating. Many folks choose a similar diet for heart health or fitness reasons.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 7/29/2009 10:05 AM (GMT -6)   
princesa- your diet sounds pretty healthy. do you eat at restaurants.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- jumbed back on pentasa 500mg 1 asacol- remember always treat from both ends- this is really good advice and dont ever doubt it.
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity

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