interstitial cystitis and IBS

[Ness28]

Hi All,

Does anyone suffer interstitial cystitis and IBS? Thank you

[Carrjan]

Yes. Especially in the mornings. I find drinking coffee plus plenty of water helps because the coffee stimulates the kidneys and you must give it plenty of liquid to pass through.

[Ness28 in reply to Carrjan]

Thank you for you reply, it’s painful sometimes dealing with both. Do you use any vitamins or medicines or special diet to help yours? Thanks

[Hidden]

Hi ness is that where you feel pressure on the bladder and you pee more ? If it is then yes ! I can go 30 times a day and have to get up 3/4 times at night ! ☹️X

[Ness28 in reply to Hidden]

Hi, Yes and pain in the bladder region that feels like cystitis, but there is no bacteria in your urine.Thank you for replying.

[daisie2013]

Yes for many years, I find high strength cranberry tablets help.

[janetmtt in reply to daisie2013]

Daisie how have you found cranberry tablets - D Mannose crippled me with stomach pain, gas, wind - do you get that with cranberry - people told me do not take it makes it worse but how can there be so many positive reviews on it D Mannose is a simple sugar and for me also gave me same issues as aspartame does - bad tempered really depressed so two reasons why I stopped. Did you have any issues - what were the benefits and any side effects. I actually find it better when I do pass more urine. Even test strips were coming back negative

[daisie2013 in reply to janetmtt]

I don't know anything about D Mannose but I do know by taking high strength Cranberry capsules, 25,000mg, it definitely helps. I find cranberry juice too sweet & avoid aspartame, also coffee which is a bladder irritant, similarly baths, perfumed soaps etc. you have to find what works for you but it's not straightforward. Hope you get some relief.

[janetmtt in reply to daisie2013]

I know it is awful. Homeopathic remedies have helped. Trial and error

[Hidden]

Hi Ness I'd never had cystitis and suddenly started havung continuous episodes, like you no bacteria found. Had so many tests, investigations etc. For me, it turned out to be low oestrogen caused by early menopause (age 38). Went on HRT and no problems since....

[marthaalice]

I suffered with I Cystitis for a couple of years. The only thing that cured it was giving up Caffeine completely. If you research it, Caffeine stimulates the bladder, I gave it up for a year or so and gradually re-introduced it.

[HBpencil]

It's something l suffered from years ago and would go into urinary retention and have to be catheterized.I found taking D.Mannose helped a great deal. I still take it regularly. I buy it from Sweet Cures online....

Hazel.

[janetmtt in reply to HBpencil]

I tried D Mannose killed me so had to stop -

[janetmtt]

I been like this for three months - no infection but all the symptoms like those mentioned above - I tried D.Mannose and worked couple days then stopped but killed my stomach with wind and gas. Been using homeopathy but as soon as I stop remedy it returns - got appt with Dr today and I told him I thought it was IC - he had never heard of it!!!! A Dr. not hearing about this issue is bad. I went through meno about 10 years ago so I will not want to go on any hormone therapy - if a confirmed diagnosis is IC I will go down homeopathic road again. He said it could be this other problem that gives same kind of symptoms as UTI but TBH this Dr sounded like a newly trained registrar - will ask for a more senior Dr today if I am not happy with his consultation. I rang GP Monday and only got appt today.

I did get some cranberry tablets but told this makes it worse!

[OrchidKoi15 in reply to janetmtt]

See a urogynecologist! You can get bladder installations which are really helpful to most. Are you on Elmiron? I cant be off of it.

[janetmtt in reply to OrchidKoi15]

No I have had relief from homeopathy remedies and that would be my preferred road as it makes it bearable giving symptom free days.

[Gardener]

Have you had your urine tested by hospital path lab? Dip stick tests are not reliable and even hospital tests sometimes miss an infection. I always take a sample first thing in the morning before it is diluted. I have suffered with Cystitis and IBS for many years, both are awful and very debilitating. I have been on a small dose antibiotic for about a year and came off it recently, so far I’ve not had a bad flare up since. I tried D-Mannose, but like others, it caused me terrible pain and bloating because it is a sugar FODMAP. I wish you well, you are not alone.

[OrchidKoi15]

I have pretty severe interstitial cystitis and IBS-c. I just had 2 surgeries on my bladder for cystitis cystica and a huge ulcer. Both diseases by themselves are crippling but add them together, which I'm learning is super common, it's a nightmare. I am still trying to find a way to regulate my diet for both conditions plus I have pretty significant mental illness probably from having this my whole life. If i took cranberry supplements, I would be in the hospital with bladder pain. Not really cause no one helps people with cystitis and we dont have valid pain complaints, again, my experience. But I am so limited in what I can eat and drink. Currently, potatoes, noodles, butter, american cheese, Turkey meat no condiments but mayonnaise and purified water are all I can handle. Really hoping to get my bowels back in a routine again, I'm either doing enemas or taking laxatives and never know how it's going to be. And swinging both ways triggers my bladder. I did learn recently from my gastroenterologist that cystitis can cause your pelvic floor to become inflamed and in turn flare up the colon. My urogynecologist says there is no correlation. So fun!!!

[Smeese in reply to OrchidKoi15]

I really sympathize - I also suffer with both. I was on a very restricted diet like you and I can't help but notice that the things which are working for you are all low fodmap (assuming your noodles are rice and not wheat). Maybe have a look at the Fodmap diet and try some of the other low fodmap foods - oats, rice, berries, chicken and fish? Reintroduce one at a time? It's been such a blessing to have more options in my meals. Sometimes being too restricted can actually cause the problem - I did a very restricted keto diet for about two days and it had awful repercussions for me.

[janetmtt]

Visit to the Dr yesterday resulted in blood tests, ultra sound, chest x ray - then when results in take it from there. He said he found a pulse in my stomach which may need a cardiologist to look at and may involve drugs to control BP - my BP is low so no fluid retention, swelling of feet etc. and people get these but sometimes never bother them but if it bursts it would be an A & E job as pain be intense then he said may have to involve a urologist - told him I had a bladder stretch in 2000 so then said oh well the pulse may be secondary now but need to wait for ultra sound. Got up this morning to a text saying after speaking to a colleague think chest x ray be good even though he sounded me yesterday and nothing abnormal. I still felt this Dr. is pretty inexperienced and having to check with a colleague sort of confirms this. But I have to say he put the fear of god in me. Said got to go through the checks to rule out everything as IC is not a diagnosed complaint - if everything comes back normal then it is IC - or may be I need another bladder stretch!

[Batteria]

From the age of three I suffered from pudendal neuralgia. I tried to explain to parents and grandparents what was happening to my body but I didn’t have the vocabulary and they couldn’t work out what was wrong. I was being woken up during the night with very painful orgasms which made me scream. Throughout my life medics were completely baffled and said I had

Cystitis

Interstitial cystitis

Vaginitis

Vulvodynia

One urologist told my husband I was attention seeking!

I found an American doctor who knew about the problem and I was due to visit her in New York but she died suddenly. Then I found a colleague of hers in London so I contacted him myself and he agreed to see me straightaway. He was a miracle. He believed me and put me on duloxetine and I have never had a soregasm since. I had to sleep and walk around during the day with a bottle of ice between my legs for fifteen years. I am now seventy six and free of that kind of pain. Men can get this too; it is not just gynaecological. I had to do all the research myself because all the medics I saw thought I was exaggerating. You might like to show my post to your practitioner. But before you do that make yourself familiar with the condition yourself to see if there are any parallels. Buona fortuna bx