I've had IBS-D for 27 years....I need help.

Hello, I'm a new member. I found this site while searching for some kind of remedy for my IBS-D.
I've had it for 5 years and feeling very hopeless as it sounds most of you are...

stilltiredofit-I can't imagine going thru this for 27 years although it looks like I'm headed that way.

simzee-I have also been thinking of not eating as a temporary fix. I'm just worried about not getting nutrition and doubt I could handle a multi-vitamin on an empty stomach. Still, it might be better than eating and dealing with the IBS.

I went in for a colonoscopy after 4.5 years of taking immodium every day (FYI, the doctor said it was fine). The original diagnosis was ulcerative colitis and the doctor prescribed Asocol which gave me apx. 2 weeks of relief (after 4.5 years of constant IBS-D, I was elated). Soon after, the medication just stopped working.

Since my med insurance was great at the time, I switched to a specialist who said the tests were inconclusive and told me I did not have UC. She proceeded to make me feel like I was a fool and had no "real" problem. I've seen 4 doctors since and nobody has been able to help. The last was convinced I would be fine if I took a probiotic, but no change in my condition.

Throughout the 5 years, I've tried every combination of diet/not eating certain foods, but nothing seems to help. I have intense pain and diarrhea when I eat and throughout the day (even when not eating). It's worse in the morning which makes me late for work and every event- all the time. I don't eat during the workday anymore, but that leads to fatigue, etc. Immodium helps just a little bit, but by no means allows me to lead a normal life. I feel hopeless. I've seen several doctors with no improvement or help. I broke down crying like a baby at the last doc. Nobody understands unless they've gone through it. Reading all of your posts makes me want to cry. Is this all we have to look forward to? A lifetime of pain and starvation?

I was not always this way, but I can't think of anything that changed to make me this way. It just seemed to happen. It looks as if nobody has really found anything to help so I don't see the point in pursuing more medical advice. Sorry we are all suffering. Sorry for the long post.
thanks

Thank you, Kim123. I will check out the diet. It's just so confusing because certain things work for certain people. Still, you are right. Limited diet is so much better than living this way. I want to be able to take a vacation some day.
=/
Thank you!

Hi Kim,

Thanks for the info. I've tried eliminating all caffeine (coffee and soda) and alcohol from my diet for about 2 months and there was no difference so now I do drink about 1-1.5 cups/day. I looked at the anti-fungal diet and I don't even know where to get that stuff LOL. I went shopping last night and had a hard time finding cereal, for example, that didn't have some type of wheat listed in the ingredients even though it was a corn cereal. It's very confusing to me. I have not always been this way..only the last 5 years or so and I don't know why it began.

The last week, I've only been eating one or two very small meals per day consisting of steamed rice and broth. I guess I feel better, but probably just a matter of there not being much food in my system to make me sick. I am taking a multi vitamin to try to stay healthy. I don't know what else to do. I suppose I will try to find anti fungal products at the health food store.

I'll let you know how it goes. Thanks again.

Thanks, Kim!
I will check it out. I'm sure it's something I don't want to eat...
=p

Me too snowylynne. I know what messes me up and 9 out of 10 times I avoid these foods. Sometimes I do indulge or stray from my diet but mostly I've accepted I just have to eat this way from now on to be as normal as possible.

Managing IBS has been a 10 year struggle in my situation. I believe that once I accepted this is just the way it is and will be for the rest of my life, I felt better overall. I had a different attitude (to do what it took to feel as well as possible) and put my hopes of returning to a former lifestyle (busy) or diet (high fiber, etc.) to be a thing of the past.

For the most part I do better than okay. But I spend a lot of time in the bathroom. Again, I've accepted this. If I leave home, I usually determine where the closest bathroom is in case I need it quickly.

All of these habits in me are ingrained by now. Second nature, that sort of thing.

Just wanted to say that I have noticed a difference since I have been taking Caltrate 600-D Plus minerals calcium supplement. I have had less bouts with my IBS-D. I hope this continues to help and maybe it can help you.

You might want to try taking psyllium seed powder and a probiotic like Florastor (works for me), and L-Glutamine.

Ok Ive had IBS-D for 28 years and every test and Dr. around here. I do not eat out anymore, it is a waste of money cause I lose it before i get home. I have tried all the diets and meds. Have had bacteria and that really can cause nothing to work. First thing is to make sure you do not have a bacteria, I have had it twice.  I swear by DONNATAL! It is the only thing that really has ever helped me. The first time I took it I was a new person for a couple of years. Without something to help I will go 10 to 20 times a day. I go on FMLA and go off all meds and try new solutions all the time. Nothing really works. Even 8 immodium a day doesnt help after a while. Ive been on the Donnatal for a year now and it is starting to not work as well but I am still working. MY Drs. told me after so many years of IBS -D the bloating will only get worse so I live with that. I tolerate the pain as well. However 5 weeks ago I was diagnosed with Fibromyalgia and have been on Savella for 3 weeks. It has actually helped my IBS. I tried a Anti depressant 2 years ago but had a reaction to it. Savella is just for Fibro but I have been told that Fibor and IBS together are common. Please ask about Donnatal because it really helps me. Also the advice about no diet or sugar substitutes is VERY IMPORTANT. They are like taking exlax for us with IBS. The only milk products I eat are cheese and yougurt. No greasy foods. Thats my advice. Good luck and let us know if you find something that works.

Hi - I'm really sorry you've dealt with this so long. I hope my story is an encouragement to you. I’m 44 years old, happily married with three great kids and have suffered with ibs most of my adult life. I’m a consultant and am always at new locations so making sure clean private, clean restrooms has always been a concern. I suffer with alternating C/D most of the time but mostly D in the past 8-10 years. It’s been manageable but has altered my life significantly (need for well planned travel, esp. if flying, no camping trips, wanting those foods that you like and suffering the consequences when you partake, having those days where on the 3-4th trip to the br you just give in and then pop 2-4 Imodium’s and hope it all stops. It’s not a easy topic to share but I know how many suffer with ibs and wanted to share this remarkable turn around I’ve experienced for the first time in I don’t know how many years related to my ibs.

I’ve had all all the tests and gone to all the gastro dr’s who just tell you to watch what you eat…I don’t disagree with them but I really don’t like taking drugs that alter my moods and have the potential to develop who knows what side affects.

A colon that is not stressed absorbs well and functions normally are the days that I’m thankful for. Two months ago I started taking a glutathione supplement that has forever changed my health. After a lot of research, I learned that cellular health is the key for most people to stay healthy esp. as it relates to digestion. All this colon inflammation is really a root cause of many ibs problems imho. So why not treat the cells. In comes glutathione (GSH). This is not found in any fruit, berry or herbal supplement ..it’s manufactured by your body. It’s the master antioxidant and the key ingredient in your body for generating energy and fighting cellular inflammation. I found a new glutathione (GSH) nutraceutical that boosts your GSH production. It’s ingredients are absorbed into my cells to accelerate the production of glutathione (GSH). Glutathione (GSH) is sometimes used for cancer patients and to treat extreme toxicity/overdose patients to flush out their system. “Research shows that GSH levels decline by 8% to 12% per decade, beginning at the age of 20. Levels of glutathione are further reduced by continual stress upon the immune system such as illness, infection, and environmental toxins. While you need glutathione for a productive immune system, a weakened immune system hampers the production of glutathione.” The clinical trials are really remarkable with this GSH. Most see a huge increase (over 200%) increase in the production of GSH in only a few weeks.

Here is what I’ve experienced after a short few weeks.

Prior:
Daily and weekly battles with ibs..no matter what I eat..creating wild swings of C/D after taking immodium..cramping, cranking moods, loss of productive hours in the day, no energy, feeling very down, etc…you know the feeling. Stools like ribbons, never feeling like “your done”…another trip to the br is coming…Just hoping your work collegues don’t notice how many times you’ve “stepped away”

Now:
Normal bowel movements with firm stools.. (to all the D suffers..this is huge)
Regular bowel movements, not the major swings between C/D,
Almost no cramping….!!!
Fatigue is gone..
Major increase in energy levels…I work 8-12 hours of work, run/walk 2-3 miles each day, normal family duties
and activities
Sleep and dream like I’ve never slept before… I wake up and in 5 minutes I’m ready to roll. When I go to bed..
not really tired…it’s really an amazing feeling.

Disclaimer - I did started walking a bunch back in Nov of last year and lost 15-20 lbs. and exercise regularly now but the improved ibs systems really became noticeable after I started the glutathione treatment. I still have to watch what I eat and avoid my “triggers” but my health is improved 10 fold in the last couple of months…check my blog for more of my story....http://rnbetterhhealth.blogspot.com/

stilltiredofit51 said...
Hello to everyone,

As I posted in August, I started taking Caltrate for bone & colon health 600+D plus minerals. I have had IBS-D for 27 years and this has been the only thing that has improved my syndrome. Instead of having alot of 'spells' and alot of them uncontrollable, it has certainly improved. I seem to have, what I call normal bowel movements and have had only a couple of 'spells' in the past two months. I have also started taking a probiotic formula of Acidophilus. Being it has to be refigerated after opening, I have been taking the chewable Caltrate, while I'm away from home. I think I'm still in shock that after all these years of suffering, this pill was on the department store shelf; all this time. Please give it a try. It didn't take long to see the difference.

Good luck.

It's so great to hear a success story! You know, it makes perfect sense that Caltrate would work for you! As an IBS C sufferer, I steer clear of calcium because it will turn my insides to cement. Not only have you managed to control your symptoms, but you're doing it with something that will offer side benefits as well! Maybe you'll never need to worry about osteoporosis!

Get yourself checked for H. Pylori. Contrary to popular belief. H. Pylori is a bacteria that can cause many IBS like symptoms including D.

Perhaps you could try caltrate 600 with d and magnesium . I tried it after reading about it here. I take one 3x a day with excellent results so far. No more expensive drgs like questran, etc occasionally, i have a reaction to a food and sprint to a bathroom. I hopee it continues to work for me and possibly for you too as it is so cheap,$8 per bottle of tablets lasting for a month. Some combine this with other meds for excellent results. For me it is enough alone. Good luck.