IBS & Interstitial Cystitis

[wizzie2090]

Do any of you have IBS & Interstitial Cystitis? I’ve had IBS for 5 years and the IC for about 2 years. The pain from both is beyond comprehension. I live alone and haven’t been anywhere but to the Dr. (when I don’t have to cancel) in 2 years. I take a 10/325 Percocet when my coping skills run out, once, sometimes twice a day. I can’t take care of my house and taking care of myself has become very challenging. My fiance’ used to help me with everything, but he suddenly passed away 2 years ago. Now I have no one. I’ve spent so much money on prescriptions, everything you guys have suggested, FODMAP ingredients (food is not an issue for me), doctors that don’t take insurance, acupuncture, books and the list goes on. I’ve had all the tests and scans as well. Nothing helps! I’m female, 65 yrs old and have IBS-M. Any help would be appreciated, especially for the IC. Thanks.........Patti

[Forestina]

I am so sorry. It must be so terrible. I never seemed to recover from my cystitis although all tests came back clear. Just feel as if the whole of my abdomen is burning.

I know how hard it is as even distraction techniques don't work. Sadly I have no answers and like you will be following any replies with interest.

[wizzie2090 in reply to Forestina]

Oh no! I hate that you have it too. It’s horrible! Do your “lady parts” feel like razor blades on fire? It even hurts to walk & stand. Hope we can get some answers.

[Forestina in reply to wizzie2090]

Everything hurts in all positions.

[wizzie2090 in reply to Forestina]

I forgot to tell you, Medical Marijuana works really well for the pain. But, can’t go anywhere after using. Trying to find a CBD dominate strain that works so I can leave the house.

[TerrymC54]

Hi Patti, I'm so very sorry! I have had Fibromyalgia for 37 years, Osteoarthritis for 16, IBS-M for 14 & Interstitial Cystitis for 13 years. The last two, IC & IBS; are the worst & living hell. I know exactly how you feel. I will be 64 in July. I have 5 adult children, 6 adult grandchildren & 3 great grandchildren with another due in August. Getting to the Dr is practically all of my social life. I can't write more tonight (I live in Florida & it's 1:30am) but I will come back & share with you tomorrow night, except earlier! Happy to meet you, Hugs, Terry

[wizzie2090 in reply to TerrymC54]

Oh Terry, you sound just like me! I live in CA & I love FL! My parents lived in Vero Beach for 25 years & my sister just sold her place there. Used to visit twice a year until 5 years ago when I got sick. 🙁 I no longer talk to or see any of my family or friends, except my parents. Sick girl problems that make me so sad. My granddaughters are 10 & 12, and I miss them so much. No one cares to understand my situation. Hope this hasn’t happened to you.

Is there anything you do or take for the pain? What about sleep? I have to get up every hour to pee, so I’m really excited when I get 5 hrs of interrupted sleep. Used to be only 2 or 3 until I started taking 3mg of Melatonin. I’m also very dizzy & have constant ringing in my ears. Unfortunately, I’m getting used to it. Looking forward to hearing from you again.

[TerrymC54 in reply to wizzie2090]

Hi Patti, we do have a lot of things in common. I was born & raised in Torrance, Calif & Garden Grove. My husband & I & a lot of our kids & grandkids moved to Venice, Forida 7 years ago. We are happy here but we miss the rest of our family in (which includes the younger great granchildren) I also have ringing in my ears. : (

When I first got IC, I purchased this book off of Amazon. They sell used ones too for a discounted rate Along The Healing Path~Recovering from Interstitial Cystits by Catherine M Simone.. It has a lot of home remedies in it & it really helped me a lot!

amazon.com/Along-Healing-Pa...

I take 25 mg of Amitryptiline every night about an hour or more before bed, along with my Melatonin. It helps me to sleep but also helps quite a bit over time with IC pain as well as Fibro. I take 10 mg of Hydrocodone 2x a day for pain. I many times cut them in half to spread out the relief throughout the day. When I am in a bad IC flare, I also take Pyridium or OTC Azo for urinary pain, along with sipping on some baking soda water, helps loads! If I am in a flare for quite awhile I will go to the Dr & have a urine culture done to make sure that I don't have a UTI, since people with IC are more susceptible to UTIs. I always have the culture done though instead of the quickie lab test in the Dr office, because people with IC can give off false positives & heaven knows we don't need to be taking MORE antibiotics than we already have to. For IBS, I take both pre & probiotics. They take a couple of months to really start feeling the benefits. I can recommend some to you if you are not getting results from the ones you are taking now. I drink the following herbal teas for IBS & IC~ Fennel, Peppermint, Ginger, Chamomile, Catnip, Burdock Root & Marshmallow Root. Aaaand, my heatiing pad is my BESTFRIEND!! : )

[wizzie2090 in reply to TerrymC54]

So, you’re a CA girl! You’re very lucky you don’t live here now. Thank goodness OC isn’t as bad as L.A. I’d sell my house and move if I could, but going to have to a refi or something so I don’t lose my house.

This is so crazy, but I had a bit of a break thru yesterday. I was drinking 12oz of V8 low sodium daily, but forgot on Tues. Had much less burning yesterday & even less, so far, today. I guess it was too much acid. I will miss it as it helped me get some vitamins & fiber. Are you having too much acid?

I also take 10/325 Oxy when I just can’t take the pain. 1or sometimes 2 & sometimes none. I don’t know why I try to tough it out. When I finally take my pill, I tell myself to stop being so stubborn, but stubborn always wins. I’m definitely my father’s daughter!

I tried Amitryptiline, but if I remember correctly, it made my stomach pain worse. Maybe I’ll try again. My Dr. keeps trying, but nothing seems to agree with me anymore.

I started a new Pro & Prebiotic for my IBS and it started to work in 2 days. All the others I wasted money on gave me even worse pain. Took me forever to figure it out! I just kept throwing money away and finally stopped until someone recommended some for Gut & Mood. Everything is changing this week, but afraid to get too happy yet. I also take something called IBS Support (Amazon). I’d been out for awhile, but started taking it again with the new Probiotic. Everything that didn’t work before seems to be helping now Weird. But, have no appetite and have lost 5 pounds in a few days. I’ve lost almost 50 pounds from IBS. The only thing that gives me an appetite (sometimes out of control) is Medical Marijuana. Been out for a few days, hence the weight loss. I was never overweight, so now I’m scary skinny. Horrible way to lose weight😖

So far, I’ve never had a UTI, but always have blood in my urine. Also, haven’t been on any antibiotics for years.

I will absolutely get one of the IC Books.

I do drink many of the same teas as you, but they don’t seem to help. I need to start using my heating pad again. I’m either really hot (have a low grade fever daily) or freezing. No happy medium!!

[bc044]

do you eat lemon? I only have this if I eat raw lemon - it's the one thing that is supposed to help but it doesn't. If I heat the lemon juice then this is ok but raw causes me a nightmare. sorry if that isn't of any help.

[wizzie2090 in reply to bc044]

No, I don’t use lemon juice. Do you put it in water? What does it do?

[bc044 in reply to wizzie2090]

Lemon Juice causes me Cystitis. Consistently within hours of having it I can't pee and causes major pain trying to. The lemon juice is supposed to be a cleanser and help but for me it is a complete irritant in my bladder. So I wondered if you take lemon but you don't. Have you considered fecal transplant? I have IBS and I am thinking to try this if possible. It might not work for me but it appears many people are having success with it. I'm surprised food isn't a cause for you but it's not at the root of the issue for everything. I hope you find some relief soon.

[wizzie2090 in reply to bc044]

I’ll let you do the transplant first! I try to stay away from high acid foods, like lemons. Just think about worse burning makes me cringe! Take care......

[binks]

Angela Kilmartin writes excellent books about all types of cystitis and her advice was a life changer for me. Google her and you'll find a list of titles - cystitis ruined her marriage and her career - she knows what she's talking about. All the very best.

[wizzie2090 in reply to binks]

Thanks Binks! I’ll check it out!

[Gardener]

I too suffer exactly as you do and have for many years, so you have all my sympathy. I only seem to go 3 to 5 months without antibiotics and then the symptoms never completely clear even when the hospital test says “it’s all clear”! And I know only too well the excruciating pain of both conditions.Its interesting that you and all of the above ladies, me included, are in our 60’s, one possible line of thinking is that it is made worse post menopause by very low oestrogen, which does effect that part of our bodies especially. You can have HRT cream or pessaries just for local application. Might be worth trying, I may be going down this route soon. Sending all good wishes, you are certainly not alone in this awful situation.x Ros

[wizzie2090 in reply to Gardener]

Thank you for your response. It’s 7am & I’m on fire. You know what I mean.....

I take hormone replacement because my menopause symptoms never went away even though my periods stopped when I was 48. I think the worst part of IC is the constant sleep interruptions. I’m afraid to take anything strong to help me sleep as I fear peeing my PJs. Worst part of IBS is the constant stomach & back pain. I just started a new Pro & Prebiotic that seem to help a little and it’s only been 3 days. Need something much stronger for the IC burning. Take care & stay in touch!

[Gardener]

I really feel for you, when it’s so bad at night I wrap a cold pad from the freezer in some kitchen paper and hold it between my legs, it does help to take some of the local inflammation away. Hope you are having a slightly better day.

[wizzie2090 in reply to Gardener]

LOL, I do the same thing!!! Whatever works! I also get something called V-Magic from Amazon. Again, the only thing that gives me relief is Medical Marijuana.