Any Success Stories?

[ibdoer]

I know people do not come on the forums to talk about how awesome they are doing. But these forums are sometimes pretty negative. All I read about is fistula after abscess, followed by obstruction and surgery.
Anyone on here (or anyone know someone) that is doing or has been doing fairly well? How about some success stories? Thanks.

 

[Skinny Dub]

My success story would be that I had surgery back in November and have been doing great ever since and hope I still feel this way years from now.

 

[Nyx]

*jumps up and down waving arms madly* I'm doing fantastically since my colostomy in December Pooping in a bag is pretty great!

 

[My Butt Hurts]

OOO!OOOOO!!! I have one!!
I have been in remission for a year and a 1/2, thanks to remicade. I've done very well on all of my meds actually, until they quit working and I have to try something else. Though I have been in and out of remission, I've only had 2 bad flares since my initial diagnosis.
So yeah - it IS possible to live a somewhat normal life if you can somehow get your symptoms under control. I was a 96 pound skeleton in July 2008. I am now 146 =)

 

[braveheart]

It depends on what do you think about yourself being successful.

Treatments work with more or less rate of success and you can also adjust your life a little bit according to the ups and downs of this illness.

I managed to study at the university, to play some sports, to have a family, to have a job and to make ends meet in a crazy 3rd word country. All this things having crohn disease, I don’t think I am successful, I think I am a super hero :lol:

I understand your feelings this can be very depressing, but you could get some relief if any of the available treatments suits to you.

 

[Cookie]

It does kind of make you worry, doesn't it?

Well,I don't know if I can claim a success story, but I had fistula surgery in October and have been doing much better in that department. Things with the tummy still aren't perfect, but I feel like I'm moving in the right direction, so that's encouraging, isn't it?

 

[Mazen]

I'm like the others. I had an ileo-cecal resection in January and now feeling much better than before. Not 100%, but at least no more pain and fatigue all the time. What I learned with this disease is you have to think positive, else the negativity will drive to a worse and worse cycle till you have a full blown flair. Try to adjust your diet, reduce stress, take meds or have surgery when needed and have faith that things can get better..... This forum is excellent since you can talk with people in the same situation as you, who understand you like nobody else can, and are here to support you when needed, and have a laugh about it along the way

 

[Lisa]

I've had crohn's/colitis since I was 7 years old...managed to avoid surgeries - been in the hospital multiple times.....

But, worked full time, went to school, had pretty active social life.....then met my husband - we have a beautiful (5 y/o) daughter - I have been on Remicade for over 4 years now - need to LOSE some weight!.....still active with my horses, full time work, motherhood.....

So, I guess a success.....

 

[Astra]

I think I'm in remission, but we'll soon see in a few weeks time!
My major flare was blitzed with Pred 4 months ago, and I feel fab! Only on Pentasa now (Humira is waiting for me tho, just in case)
and going back to work on Monday, been off since January, so I think that's a success story!

 

[Lydia]

I had 4 years of remission before coming to the board. Then I had a really nasty flare with fistulas. I was scared to try the remicade but it healed my fistula within days and when I saw my GI 4 weeks later we both agreed that I am likely in remission again. I went from being really close to needing surgery, to remission in a matter of 2 weeks. During my last remission I met my hubby got married, bought a home and had a child. We hiked, camped, and snowboarded. We lived it up. With crohns I finished college and made a nice career for myself in the pharmaceutical industry.

 

[CrohnsHobo]

I had close to seven years remission before coming back to the board.

After a bad year last year I am currently feeling great on my current med regiment.

 

[NatalieMT]

I'm not feeling too bad at the moment either - I'm relatively stable, have a job for the first time in a long time, have cut my painkillers, now have a great GI team.

I wouldn't be classed as in remission but hopefully with a medication change now in the pipeline things are certainly looking up.

 

[D Bergy]

I have been symptom free for well over two years, and truthfully, I am in better shape overall than I have been in years. Even prior to my official diagnosis.

I had depression all my adult life, and accidentally found out that was related to inflammation form Crohn's. I got rid of it by reducing the inflammation. I am probably the only person in the world, who is glad they were diagnosed with Crohn's, because it led to me resolving the depression problem.

How long will it last? I am not 100% sure of anything, but I think I know enough to keep the disease in a small corner of my life indefinitely. I have more research to do, but I have other stuff going on now that I have to take care of first.

Dan

 

[fateful_one]

I can't speak for everyone here. But, I tend to frequent the site much more often when I am flaring or having some other Crohn's related frustration. During my good periods though, I have managed to forget about having Crohn's and thus posted less.

If this is true of others too, maybe this creates a distortion and makes things seem more negative than they actually are. Just a guess.

Anyhow, I have had Crohn's for 5 years. I have never had surgery, but have been hospitalized a few times and I have been to the ER countless times. It has been a roller coaster over the years, but when I have not been flaring, I have felt great. I have traveled out of the country, worked in remote mountain regions of Utah as an archeologist, went camping, ate whatever (except a few of my trigger foods), hung out with friends, dated, etc.

 

[Hedgehog]

I think it's understandable that people use the forum more when they're going through a hard time with the disease. It's great to read about the positive stuff here though, especially for someone like me who's newly diagnosed!

Dan - I was wondering in what way Crohn's inflammation is connected to depression. It's just I had thought there was a connection myself so I was wondering if you'd read something or it was just your own experience?

Gail

 

[D Bergy]

After I was diagnosed with Crohn's and had a stricture removed, the doctor recommended Imuran as a treatment. I have had some negative experiences with doctors in the past, and while he was a very good diagnostician, I was not about to take anything until I knew all of my options.

What I needed was some time to investigate this further. I was flared at the time, and needed to get a grip on that right off. I started taking larger doses of Turmeric, Ginger and also Krill Oil. This did quell the inflammation quite a bit, but was not 100% effective. What my wife noticed, before I did, was I no longer was having bouts of depression. She was right, I had not had any depression since I started taking the big doses of anti-inflammatory supplements.

I had used Turmeric and Ginger prior to my diagnosis, but only minimal amounts. I was taking six times as much and that resolved the problem.
I was not expecting that as a result, so placebo effect was not involved.

After deciding on Low Dose Naltrexone as a treatment, I again lowered my dose of Turmeric and Ginger. It did not change anything, but now the LDN is keeping my inflammation down. I also do eat anti-inflammatory foods, and that may also help a little bit.

That is how I accidentally found the cause of my depression. It was a physical problem causing a mental problem.

Dan

 

[David in Seattle]

Dan - I'd like to hear more details of the Turmeric, Ginger and also Krill Oil.

TIA!

 

[D Bergy]

I took Turmeric and Ginger prior to my Crohn's diagnosis. Not for very long before, but from my investigation into Lyme Disease, I found out how beneficial these two spices were to health, and the anti-inflammatory, and decoagulation effect they could have. My wife had undiagnosed Lyme Disease from a Deer Tick bite, and I was the one who would end up treating her. I did not plan on doing this, but could not get any doctor to treat her since she would not produce a positive test.

Now it is well known that those tests are not accurate, but many of our doctors are about ten years behind the science behind many diseases. That is another story, and I am still treating her disease, but she is doing much better now. Enough about that.

I was well aware of the properties of these two plants, and it was natural for me to use them to knock down my own inflammation. I took 1500 Mg two or three times a day of both Turmeric and Ginger. I also added a double dose of Krill Oil that I used to both balance my cholesterol and help with inflammation.

This did help calm down my inflammation, and my lack of D most of the time was one of my indicators. It was not perfect as a Crohn's treatment, but I did not think of it as my solution, it was to buy me time to figure out the disease. Like the Lyme I was already treating, I needed some idea of what caused the problem in order to treat it in a manner that made some sense.

It was at this time my wife noticed I was not going into any depressive funks any longer. I thought it could be coincidence, but it stayed that way for months and now years. I have had a couple of one or two day relapses, but these are from viral infections, or some other direct cause of inflammation. They go away as soon as the illness is gone.

I have not figured out everything about the disease, but I think I know enough to keep it under wraps. I do have a treatment plan that makes sense based on what I understand to be some of the causes of the disease.
I am not completely satisfied that I know as much as I should, but it is good enough to keep me well. At least so far.

That is the short version. I did try several other things in between, and most did not work or were inconclusive. I also found at least one important treatment product that brought me 100% out of my flare and that was Miracle Mineral Solution or MMS. There is lots of uses for this alternative medical product, but it kills acidic bacteria exceptionally well. This was how I killed off most of the bad bacteria in my intestinal tract prior to using LDN as a main treatment. Once that bacteria was reduced, I had no more inflammation problems. LDN and MMS are the back bone of my treatment.

I should mention that just prior to my bad Crohn's symptoms I had several stressful events going on around me.

1) My wife was fairly ill with Lyme Disease.

2) I had recently came close to being layed off from my job permanently.

3) I was taking online classes that were very difficult given our busy schedule and other problems at the time.

4) One of my children was becoming a Meth Head at that time. He is fine now. This one alone was harder on me than anything else by far.

5) Of course, my on and off again depression was not any better either. I could deal with it, but it did not help.

5) I was overweight, smoking more than ever due to the other problems. I felt sick just from the situation. I had never had to deal with so much, at one time.

That was the scenario I was in, just prior to getting really sick with Crohn's.
Stress finally broke the Camels back, unfortunately, I was the Camel.

That is probably the most complete explanation of my situation I have ever given, but I do think the circumstances had much to do with the timing of my illness. I am glad those days are behind me. They really sucked.

Dan

 

[GoJohnnyGo]

I'm in a manageable state. A few ongoing symptoms (related to diarrhea and frequency), but for the most part the gut pain is gone. I have to be careful what I eat, though.

Still having other autoimmune issues. Right now they're probably bigger than the Crohn's.

Hang in there ibdoer. There are indeed ebbs and flows, Those of us doing better need to continue to contribute. Very important component of any support group.

 

[Hedgehog]

Thanks lots for the info Dan; really helpful and interesting. I'm going to do a bit of research myself. I do think depression is often physiological. It seems obvious to me but it goes against the mainstream view.
Gail

 

[D Bergy]

There may very well be more than one cause of depression, but if you have an inflammatory disease, the inflammation may be the cause.

Doctors have noticed that patients with Arthritis, Lupus, MS have often have personalities associated with other patients with the same disease. It is sometimes thought that the pain they are in accounts for their less than desirable personality traits, but it often may be the direct mental effects of the inflammation from the disease.

Here is an interesting article related to this subject.

http://itsnotmental.blogspot.com/2008/04/inflammation-of-body-and-brain.html

Dan

 

[kenny]

Had a resection last fall and I am fully recovered, eat a wide variety of healthy foods and am back at work full time with no issues causing problems there. What more can I ask for?

I think it worked out well for me so far

edit:
Oh Dan you are not the only one happy. I have been bleeding out my arse for the past decade and thinking it was my fault for eating too much crap and not taking care of myself. It is a HUGE relief to get some understanding of my situation and a chance to make it better

 

[Hedgehog]

OMG, Dan that article is sooooo interesting. I've noticed the link in myself between mood and inflammation (I've had a range of inflammatory disorders, mostly not serious apart from the Crohn's). I mentioned it to my GP but he scoffed.
Thanks for posting.
Gail

 

[David in Seattle]

I took Turmeric and Ginger prior to my Crohn's diagnosis...

Thanks for the details, Dan. Wow, you certainly have been through a lot. I'm very glad to hear that you, your wife & son are doing so much better. Like so many of the stories of courage in the face of adversity I read on this site, it's very inspirational, as I climb my own personal mountain.

In terms of the ginger & turmeric, where you simple using the powdered forms generally available at the grocery? Or (in the case of the ginger) where you using the root? Fresh ginger root is fairly spicy, I used to have a terrific chicken recipe I put a ton of it in, I think now it would upset my gut.

 

[D Bergy]

I did use some raw Ginger root or to be technically correct Rhizome, but it is rather harsh to eat that way. I switched to capsules of both Turmeric and Ginger. You can buy it from anyplace that sells supplements.

There are some confusing forms of Turmeric that you kind of have to know a little about. The cheapest form is pure Turmeric, which is just the plant. Other forms contain processed and concentrated Curcuminoids, which are the main active ingredient that has the anti-inflammatory properties. This form is more expensive, but also is better at controlling inflammation. this form is often called Curcummin.

I used the more expensive Curcummin fortified type for controlling inflammation. I now use just plain old Turmeric because I do not need all that potency. I am pretty much taking it for my original intent of getting the other benefits from the plant. The list is huge, and I cannot even begin to list all of the benefits, but here is just one example. There are hundreds of potential health benefits just from Turmeric, and Ginger has its own long list of benefits also.

Study Shows Ingredient in Curry Spice May Reduce Fatty Deposits in Arteries

July 20, 2009 -- The compound that gives curry spice powder its yellowish color may protect arteries from fatty buildup, new research in mice shows.

Curcumin, the main ingredient in the curry spice turmeric, is a naturally occurring antioxidant known as a polyphenol. Polyphenols are found in plants that have anti-inflammatory and other protective properties.

Previous studies in rats showed that curcumin had the power to prevent heart failure. Turmeric-based compounds have also been touted as potential treatments for Alzheimer's, arthritis, and breast cancer.

The current study suggests curcumin may thwart the development of atherosclerosis, or clogged arteries, a key risk factor for heart attacks and strokes.

Researchers in France fed 20 mice a diet supplemented with curcumin or a comparison diet not supplemented with curcumin. After 16 weeks, mice fed on the curcumin-based diet had a 26% reduction in fatty deposits in their arteries compared to mice on the comparison diet.

In addition, curcumin appeared to alter the genetic signaling involved in plaque buildup at the molecular level.

The findings are being presented this week at the American Heart Association's Basic Cardiovascular Sciences Annual Conference in Las Vegas.

Dan

 

[Pirate]

Success comes in differant forms for differant people. For me it is any time I can get out of a flare with no scars or bags. So over the 24 years my whole crohns disease life has been a success of sorts. A total success would be getting my CD cured but that is a ways off yet, so I'm happy with my little successes.

 

[Claire617]

Since march 10th my life has become a success story, life is soo much better now yes i'm still recovering but I've been so happy, 2 things I thank Crohns for is how much I appreciate the smaller things now, when my friends complain about trivial things I know I'm truly grateful just to be able to eat! Also how close I am with my nan, she traveled 80 miles everyday to come see me in hospital if it wasn't for this it most probably would've been birthdays Christmas and Easter.

 

[Misty-Eyed]

I am doing pretty well at the moment and I've not had any surgery. I was pretty ill when I was younger as well.

There's always hope!

 

[My Butt Hurts]

I didn't want to make a whole new thread for this, and I have been trying to figure out for a week now where it should go.
Since it is a success story, I guess I will just add it here.

My family and I went to Disney World 2 weeks ago. I was so thankful that I am in remission right now. I couldn't imagine needing to find a bathroom 15 times a day in a matter of 20 seconds. I could have never done it. Once while we were there, I had that familiar stomach twinge, and I almost panicked - but it went away in a second. Remicade, I love you.

edit - I ALMOST FORGOT!!!!
I brought my Calmo WITH me in the parks! I folded it up in some toilet paper JUST in case I needed it, which I didn't.
AND - I wore my "DUDE! Where's the bathroom?" t-shirt for all of my Crohnie's!!

(Tee-hee! I changed the sign in the background to say BATHROOM!!!, instead of Epcot.)

 

[Astra]

COOOOOOL !!!!

Love it!!!

 

[ameslouise]

MBH - That IS a success!

But if there is one place in the world you don't need to worry about bathrooms, it's Disney World. Clean as a whistle and always well stocked with paper! Crohnie's delight!

 

[Dayz]

I wanted to bump this as I am feeling really down on the dumps reading a blog about chrons- traumatized and depressed are two words I would use to describe how I feel...This thread made my day : )

 

[soretum]

So so so good to find this thread... Just diagnosed 2 weeks ago and really really struggling today, lots of tears and just feeling so alone.... know the pred is making me emotional and I just have to dig in and wait it out but today it just feels like I'm never going to get better...have coped really well till this point but the wheels are well and truly falling off today...reading this is just what I've needed to give me a wee buck up

 

[Jennifer]

There are a few of us on the forum who are in remission and who have been for many years (myself included). I wish more people who are in remission would come on here because hearing about all the stories of being really sick can really be a downer and hearing from those who have been through it and lived through it and are doing well gives inspiration and hope to others and I think that's really important in a support group. That's the main reason why I've stayed here and plan on staying here.

 

[Gutsy]

I was diagnosed with Colitis a year ago along with gallstones, then Crohn's this year. Got medications figured out (messlamine) over time, now taking 3 x 500 mg twice a day. Finally had gallballder removed in April which helped a lot but made diarrea worse. Added Olestyr (anti-diarreheal) six weeks ago (1/2 pouch per day) and now I feel better than I have in years! I eat most things except nuts and seeds and back to my weight before it started. I just hope it lasts!

People who say they wish they had Crohns to help manage their weight need to get their head examined.

 

[Dayz]

I wanted to add this
Having had Crohn’s for 40 years, these comments are pretty eye opening. I guess I am one of the very, very lucky ones. Yes, I have had resections, my first one I was in the hospital 5 weeks dealing with surgery for gangrene which I had ignored since I was in college at the time and just newly married on top of that. Two weeks after the surgery to remove the gangrene, they did another surgery to remove the infected area of the Crohn’s. I had never heard of Crohn’s before that. Believe me, I know it now. I am lucky because I am having great luck with Humira and that is all I take for Crohn’s (an occasional flareup calls for more prednisone which usually works). Anyway, I have been teaching high school math for 37 years, have two beautiful grandchildren and many wonderful family members and friends. I love Jesus and I know He is taking care of me. I seem to never get depressed or stressed over my problems. I just deal with them one day at a time. I am going on a wonderful trip to Europe in a few weeks and as long as I have something for an occasional interruption, I will have a very blessed trip. Good luck to all of you and may God’s blessings shower you each day.
I imagine that fellow blogger Alicia found herself in much the same situation that I currently do. My life is at a critical crossroads- I'm feeling well enough that I don't need the therapeutic effects of writing this blog, and I'm juggling a ton of exciting personal and professional projects as well as a lively family life and a growing relationship. I find that I need to start giving the most important of these things priority in my life. My time, my energy and my attention. A day long trip to the beach with family (along with a business related talk with my brother) reminded me of what is really important- what I really want in my life. A family and the opportunity to grow my professional projects into something successful.

I tend to be a bit like a kid in a candy store. Every interesting thing that comes my way- I jump on board sampling a little here and a little there until I have a mountain of hobbies, activities and projects. Jack of all trades and master of none. Which is why I've been in a process of streamlining. Cutting out the things that provide the least reward for the most energy expended. Among the things on the cutting floor will be, I think, my poor guinea pig. A fun, small pet who has become a bit nippy due to the fact that I don't have time to give her the attention she deserves. I think I will be putting her up for adoption soon.

Also cut is this blog. Don't worry readers- I won't be taking this blog down or abandoning it all together as I still enjoy writing here. But it does mean that my posts will be less frequent. No fluffy updates on daily life- I will try to just write when I have something meaningful to add on the topic of Crohn's Disease. I'm not gone- just less frequent.

My advice is underlined here: remember that browsing the web can give you a skewed feeling of how bad this or any disease is. Those of us who are feeling good, have less of a tendency to post online. It also means hope for you- nothing is permanent- including suffering!

http://mystupidcrohns.wordpress.com/author/mystupidcrohns/page/18/
Above is the link to a blog that I really liked. I know that with this Disease it can be hard to think that you can lead a normal life but there are people who do.
Brian Regan: http://www.youtube.com/watch?v=UM-HWkbnDfg&feature=related
Laughter is the best medicine! I will keep posting these up!

Hope people can keep adding to this thread- Positive thinking. I had one lady who has chrons tell me to stop worrying about all of those things that possibly will never happen and to be on a road to getting healthy.

 

[Nosick]

There are a few of us on the forum who are in remission and who have been for many years (myself included). I wish more people who are in remission would come on here because hearing about all the stories of being really sick can really be a downer and hearing from those who have been through it and lived through it and are doing well gives inspiration and hope to others and I think that's really important in a support group. That's the main reason why I've stayed here and plan on staying here.

I agree with this completely. I wish more success stories were on here also. I didn't start coming here until Remicade quit on me and I was left on my own by my insurance company. I collected information wherever I could and tried a bunch of popular remedies. I finnaly found something that works for me last year and have been doing great.

When I was doing poorly, the success stories I saw gave me hope that this disease could be beat. Hang in there and keep fighting!

 

[lola99]

Well I can't say im a success but im not a walking disaster either. I've had symptoms of crohn's for about 5-6 years and it didn't get bad enough for me to be diagnosed till recently. I've never had to run to the bathroom with the "runs" and never had bleeding. I've never had issue with vitamin defiencies or weight loss. I must have mild crohn's. When i got diagnosed i just had bad inflammation and swelling that caused me severe pain and a partial blockage. Now im on entocort after weaning from prednisone and also taking asacol. I don't feel 100 percent yet since i still had some cramping but I'm not cramping nearly as bad. So I would say since i haven't had surgery,fistulas,bleeding,or dirrehea im doing good. I hope it stays that way.

 

[lookame]

I'll add me to this thread. I was symptomatic in th year 2009(at least enough to have a look at) the doctor gave me a colonoscopy handed me a paper with my results said I most likely have UC and he'd call and treat me whan the biospie results came in...well that day never came and he refused my phone calls. Since then I had been in the ER 3 times and two out of those 3 times the ER doc said I have inflammation but I needed to find someone else to treat me. Finally the last time I went I showed very anemic and was admitted for a week. I was given a second colonosopy(a complte year later from the first one) and my results were in and I finally got treatment. Diagnosed severe crohns(whereas before I had it mild-moderate) at the age of 23 in aug 2010.

Now that I'm getting treatment and I try to take my medicine religiously(I'm on 50 mg 6mp, 4 pills lialda, 2 multivitamins and iron) I'm beginning to feel pretty much symptom free. I wouldn't say I'm in complete remission because if I stop the drugs I do a 180 and start on my pain and agony path but I am in I guess drug remission, where with the drugs I am in remission...but I do have to remind myself everyday to take the pills...if I forget one day I tend to faulter back into reality of I do have an illness.

 

[David]

I'm going to close this thread only because I would really appreciate it if those of you with success stories create your own thread in this forum. Thanks!