Quality of life questions...

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.

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.

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.

     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.

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).

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.

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.

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).

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

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???

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. 

 

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

princesa- your diet sounds pretty healthy. do you eat at restaurants.