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Hi ladies,
I want to reach those of you who have had or has bladder pain as main symptom. I'd love to know when it got better for you. :)
I am 7 month into treatment and very happy with the process so far, vaginal-urethral symptoms are gone BUT I'm still dealing with bladder pain, sometimes quite bad. I'm doing better, don't get me wrong, before I was in constant pain level 8, now I have a flare once a week level 3-4, the rest is more or less ok, soreness, stiffness bladder feeling....
I feel all food bothers my gut-bladder. I am eating very little because I am scared of food and the less I eat the better I feel....and of course I'm dropping weight one more time and I look quite skinny, in a bad way...I don't have my period and I'm staaaarving all the time.... I need to eat but I can't do it and is so frustrating..!!.. At the moment I'm eating only cauliflower, cabbage, zuchinni, cucumber, corn salad, all fish, all meat, rice cakes, olive oil.... I've reached a point where I can't tolerate bifido anymore, only 1/3.... my guts are SO REACTIVE.... even the slightness change like eating more veggies, rice cakes can set up a flare....
So, I was wondering who else have the same problem. Bladder pain and overreactive gut?
When things settled down for you? I know we are all different but I'd love to know about your experiences to help me understand.
thanks and hope you are doing well!!
honestly, nobody like me? no
honestly, nobody like me? no one got better?
I don't have gut reactions
I don't have gut reactions but I still don't know which foods really bother me. I know I can't tolerate almond butter yet. I find it odd that you are eating corn salad. Was that ok'd by Dr b?
Hope you feel better soon. We are all different.
Soniafa, I know it is
Soniafa, I know it is difficult and frustrating when you feel like you can't control your symptoms. When it gets like that for me, I just take things one day at a time and I keep working things through with Dr. B. You've already had some great progress, and you will continue to do so! Sending you hugs!!!
Thanks Lisa Ann :) I've
Thanks Lisa Ann :)
I've read you are out from meds already, you should be VERY proud. I couldn't take them because my body was already very poisoned and thanks to that I found Icama. Rest assure the pain will ease, for both of us.
I like this quote: "In the confrontation between the stream and the rock, the stream always wins- not through strength but by perseverance."
send you hugs back!
food and pain
Hi Soniafa,
While I'm not really an "old" patient (1 year) , my IC has been around a long time and I can share a little about my own food/gut/bladder experiences. I have been where you are, where you have no idea what to eat and are starving all the time but it doesn't matter because you'd rather be hungry than in extreme pain- do I have it right? Everyone thought I was anorexic and I dropped like 20 lbs in about a month and a half. My gut wasn't absorbing anything I was eating and I was just in pain all the time. It seemed like my bladder was just reacting to my gut's inability to process anything.
When your gut is so reactive, it's hard to tell what's bugging it in terms of food. As you get better, it'll be more clear. At this point, I feel like I can FINALLY test food the way dr. b wants and it's clear if I am reacting because the rest of the time I feel pretty normal. The super weight-loss hungry times are long gone for me, it was about 2.5 years ago, way before I was in treatment with Dr. B. I think everyone is different in terms of figuring out foods that calm their guts down. I definitely found a meal that my bellly found soothing and would give me energy rather than drain me. But a lot of it is guesswork I think.
I was surprised to see corn salad on your list of things that work for you, corn can be kind of hard on the gut, just a thought. The other tip I'd give is (as Dr. B says) make sure you're eating veg and protein together- and starch if you're adding that in too. I definitely find that even now if I eat veg alone that I'll feel off in the gut. It's the combo that allows for good digestion and I definietly notice that it makes a big difference. Also I think rice cakes are hard on the system because they're so dry and drying, rice is easier (make it with spring water and it is esp. easier to digest if you soak it a bit before cooking it).
These are just my experiences, though- please don't take it as what you should do if it doesn't seem right! I hope you find greater comfort soon. In the meantime, I also found that yoga really helped calm me down and in turn seemed to help my belly calm down, too.
Claire
Thank you girls. I was
Thank you girls. I was starting to feel ignored! :)
"Corn" salad is not corn sorry, I found that term in the UK, is a type of lettuce called "mache" or "lamb salad", in Spanish is "canonigos"..a very low oxalate green...oxalates kill my urethra and vagina
http://en.wikipedia.org/wiki/Corn_salad
Thanks Claire because you know what I am going through, people really think I am anorexic.... my mum god bless her says "oh poor you little thing, you are sooo thin....Sonia you cannot loose more weight!!"...and I'm errr... ok mum, do you know I CANT EAT?...I wish to have spaguetti bolognesa, pizza! but I just can't!... she is lovely though...What worries me is that patients seem to move on with bladder pain but I don't yet. You Claire for instance....and I don't always have pain, is 2 days a week bad pain, and then some days ok some days so and so.... at the moment I still spend lots of time in bed watching films....when this is going to be over? :'( I am a prisioner of my own body and I'm fed up!....
Also I've been diagnosed with pelvic floor dysfunction which doesn't help either, and no wonder why considering all the tension I've been putting there.... 24h pain for a full year.....I know l will get better with time but this is QUITE HARD.... gosh... anyway, I will get there
Is funny how months ago I felt the frequency and vaginal symptoms were definitely the wrost. I should remember that. A good friend told me that the last yards are always the longest, when you take a long flight and you are arriving to destination the last 2 hours seems like centuries... maybe I'm getting there but now it feels like ages....
Thanks for taking the time to answer
xx
Sonia- From an outside
Sonia- From an outside perspective it seems like you are doing well. From what I have read on here- a lot of people seem to lose the bladder pain last. I don't have severe pain like that but if it makes you feel not alone- I haven't had real significant improvement in my vaginal etc issues. I still believe I am getting well because of other things but on a day to day basis- my symptoms are not great. You seem to have had many improvements. The seemingly endless quality of this is hard to handle at times. I remember someone saying to me that it is like filling up a pool with drops of water. It takes forever but one day you turn around and the pool is full!! That helps me a lot.
oh Deir thank you, very wise
oh Deir thank you, very wise the swimming pool metaphor.....
I have so many reasons to be grateful for, and I definitely am! I've had lots of improvements, but I've been with the food issues for so long that i cant wait to eat without fear...and without pain...
did you check oxalates Deir? Dr B told me I shouldn't worry but my case is different and a trigger... I also found that I can get lots of weird vaginal symptoms if I lay down on my back for long periods...like the bottom gets numb without blood flow or something and the nerves around the sacral area gets compressed.... I always lay down on my side and I don't have vaginal symptoms any more... weird one but works for me
we will get there, I hope by high summer or the end of this year we will feel MUCH better.
Hi soniafa! Sorry, I did not
Hi soniafa!
Sorry, I did not post earlier either. I can't say I am an old patient, also only just past the year mark. I too have not excelled with tolerating foods, which is very frustrating! I have never cheated on this diet, but have not made any huge improvements, but can see those little improvements that let me know healing is going on, just slower than I would like! Dier I do like your analogy of the pool, describes this process perfectly!:)
It seems I can add a few foods, then have to cut some out! I have become obsessed trying to figure foods out, which my husband has not become too fond of, and doesn't understand where I coming from. I guess I can't blame him, or anyone else for that matter. Until you have lived with constant pain, and food being a trigger you wouldn't understand, and I never wish that on anyone to understand where we are coming from!
I wish I could be more help with your question of how long it took until feeling better after having such troubles with food intolerances. I know one day, hopefully in the not too far future we will be able to answer this question! But right now my gut, esophagus, and bladder are irritated with what seems to be everything that goes in my mouth. I do agree with Claire, my gut feels terrible, more gassy, bloated and crampy if I eat veggies without eating with something else!
Hang in there we will get through this, you are making improvements, and I know I am as well, just way slower than I would ever imagined, or hoped for!
God bless you Cprince, I
God bless you Cprince, I admire your endurance and hability to stay focus on the positive outcome, a near future for us, I hope.
can i ask you, what are your pain levels on a normal day? also im amazed you keep working. I had to quit mine and freelance from home, I get worse by sitting, although that is getting better, I rather to stay home and rest when is needed....
yes sometimes i also get stomach pain, like GERD. what do you eat normaly?...and do you have constipation?...mine is awful now.... sorry too many questions!
"Although the world is full of suffering, it is full also of the overcoming of it." ~Helen Keller~
Hi Soniafa! I try to stay
Hi Soniafa!
I try to stay positive, but believe me I am having my fair share of Debby downer days, and today was one of them! My boss through me a curve ball at work, putting me out of my comfort zone, and my pain always increases with my anxiety, back up to an 8 and urethra and bladder burning, burning, burning! Oh well, I survived the day and I don't have to work the weekend, yay! So, hopefully will get my pain under control with much needed rest and relaxation! I stand a lot at work, I also have increased pain/discomfort from sitting or when I have to do any stooping over for any period of time.
I would say my normal stomach pain on a daily basis is around a 2-3 before eating and 5-6 an hour after eating that can last several hours. This has greatly improved. When I started treatment I had awful reflux shearing pains every night and the daytime burning would fluctuate from 7-8 and had several boughts of shearing pains under sternum throughout the day, at a 10. I had no idea what was wrong, I could no longer hide my pain from family, friends or coworkers. I felt like my aorta was ripping to pieces, and I was going to die and of course my anxiety was through the roof! My bladder has been more up and down stabbing pains off and on, but more consistently a more constant burning, tingling, irritated feeling 2-3. My bladder I would say never gets higher than a 5. More issues with frequency and urgency.
Yes, I have trouble with constipation, but with my IBS, if something aggravates my bowels I am in pain and running to the bathroom several times/day, but thankfully this has only occurred 2 times in the past 4 months I would say! Oh, the improvements!:)
I am okayed to eat beef, lamb, bison, and fish, but not much a fish lover, so eat very seldom. Veggies: broccoli and cauliflower have to be steamed to tolerate, celery, cucumber, green and red cabbage, avocado (occasionally but increases gas/pressure), and tomatoes (I know odd, but have tolerated, or at least no increase in pain from the get go, with Dr. B's approval). Pinto beans, almond butter and goat yogurt (increase burning, but Dr. B told me to keep in, if no shearing pains). Just recently added blueberries and mango, eat very sparingly and verdict still out, but after a year without fruit, I have enjoyed the added flavor!:) I also eat potatoes sparingly. I can usually tell within 30 minutes if I will tolerate the food or not. The only seasoning I use is pink or sea salt, can't tolerate garlic at all!
Sorry, got long winded, but hope this helped to answer some of your questions. Just thankful for the improvements I have seen this far, but of course anxious for more! Take care, and hope you have a pain free, or little pain weekend!:)
oh cprince I'm so sorry you
oh cprince I'm so sorry you had a rough day at work, you are very brave...but im sure you will get much better in the weekend, just rest a lot. I know how you feel because that was me last year in the office...Yes... I do find as well stress, sitting and stopping agravates my pain levels... walking and moving around is the best for me... massages the gut somehow and helps with the linfatic system.. and i'm very glad you have seen improvements with stomach pain!!!! :)) you see healing is happening
wow that's really cool you can eat tomato ...... i really miss fruit as well.... i wouldnt mind to try mango or blueberries soon...
im amazed how much the gut can make my pelvic pain go through the roof...because I don't think is just the bladder, is the gut what makes all the trouble!! for instance yesterday, that I had a pretty awesome day: I went to the city in the morning to do some shooping and I was ok, I even sit on the tube for 1h with no probs, just amazing, then i had lunch and ok, I went to see my brother and we spent the afternoon doing tie dye t-shirts, I had little pain here and there level 0.5 but sparcely and the time flew...I got home feeling great and had dinner... and THEN, I decided to take magnesium oxide for constipation..so at 3am I woke up with the most dreadful gut cramps I ever had in a long time...I couldn't believe it... I had to wake up and walk in my room for 30' to easy the pain...I blamed myself thinking "why on earth did I spoiled everything???".... I was doing soooo good... but you know, this type of things happens, my constipation is a full time job and I was just trying to feel better, Dr B allowed me to do magnesium oxide but my gut said no way...ok, you win gut.... sigh... so today I have to spend all day in bed because my pelvis is really inflamed and painful...but you know I will make the most of it, I will relax, watch nice films and tomorrow Sunday I'll be 50% better, and here in BCN is going to be sunny and lovely, so you bet I'm heading to the beach.... yesterday I had the 2 opposites together, ying and yang, light and darkness, heaven and hell...
I was thinking I wish you could take some time off from work or work part time... I felt so much better when I stopped working, but I know Dr B says if you can keep working is the best, and I know money is very important so we can pay the treatment ... so hang in there because you will be feeling well sooner than expected...that's my wish
Send you hugs, sure thing will be back on track again
I am sorry you had such a
I am sorry you had such a lovely day, and was ruined by adding in magnesium. I totally understand how one little thing can ruine everything. Bummer!:( Yes, I do hope you feel better so you can enjoy the nice weather. I have a perfect day to lounge around the house, it is in the 50's and raining here.
I wish I could cut back at work, but not a possibility at the moment anyway, and unfortunately my profession is not conducive to work from home. I think working has helped me focus on something else, even with the days of added stress.
Sending a hug your way, and hope you get the gut to settle down. Enjoy the great weather, hopefully the sun will decide to come out tomorrow here as well!:)