Need to do a little venting.

[saraht]

This has been a hard week, in a lot of pain. Trying to keep my head up, and hope things calm down. I am doing better BM wise, only going 2-3 times a day, mostly formed BMs. But I still have a lot of M when I wipe(TMI). Any of you guys experience that? I chalk it up to IBS but I just don't know. You would think with UC or Crohns I would have D, and more frequent BMs.

The spasms have been worse this week, and oh my the pelvic cramping has been horrible since I got off my monthly gift. I don't know what to think anymore. I asked the GI awhile ago if it could be from inflammation and he said no, then I also asked about the possibility of my uterus and my intestines rubbing together, and again I got no.
So off I went to my GYN who over books his appts 4x per one appt. Literally like a number in his office. All he chalked it up to being was hormones, and sent me on my way. I had a pelvic and vaginal ultrasound done that showed nothing, maybe a couple cysts on my left ovary but they were nothing but premature eggs. Most my cramps are right sided though so I have to wonder if it could be from my intestines. I have been tender on that side lately too. I will cramp on one or both sides, not in the middle, and it will go down my leg and to my knee, and or around my hip to my back. Then the dang body aches that leave me wondering if its fibromyalgia or what. I've never been diagnosed with fibro but I figured that is what is it.

Who knows if its all hormones, GYN said I can't take birth control because I get auras with migraines and it put me at a higher risk for stroke, I wonder if maybe I am going hypothyroid again. All these dang on problems, and no answers. I feel exhausted. It sucks when you try to hard to do something right for yourself, to try to pull yourself out of a hole, but your just not moving anywhere. All the money wasted on dr visits to get no answers for anything. I still have the yeast problems too.
It's just hard trying to get around to Drs when you have a toddler and no sitter. My husband works crazy hours, so I have my little one with me non stop. We basically have one specialist each in this place, all over book, and you wait 2-4 hours to be seen. Like a toddler will behave for that long.

Reading back, my goodness I sound crazy with all these problems, everything is just adding up, and boiling over. I just wanted to talk to people that understand. I didn't have any of the problems I do now until I got c.diff. And I know that didn't cause all my problems, but its like when your down, you just keep getting kicked! Thank you to everyone that has listened to me, and continues to listen to me voice my issues. It's nice having people treat you like a person instead of a number. Sadly that doesn't happen too often anymore.

[Bobbie]

After C. diff. I developed one problem after another. Are they related to C. diff.? I don't know - nor do any of my doctors. Healthy before, unhealthy afterwards.

You are with a group of people who are experiencing the same problem. Although many people recover from C. diff. without a problem, the unlucky 20% does not. Some experts think a GI problem is the reason for many illnesses. I don't "buy" it is responsible for everything, but I do think there is a correlation, because the GI tract is one of the largest organs in our body.

With time and more interest in C. diff., maybe doctors (and patients) will learn more.

Mucus just means irritation. (Carol knows a lot about it. PM her.) Most of us have it. Have you tried anti-spasmotics (sp) like Bentyl? Sometimes they help with the cramping.

See CDI - C. diff. and Hormones. Do you use a heating pad? Next to exercise, it's been my best friend throughout my "C. diff. years."

[pinkangel]

I agree with Bobbie on the heating pad. I took her advice and it helped me a lot this week. It eased my cramping and just makes me feel good. I have a cyst they saw on my right ovary in one of the places I am cramping. Last week I was on my monthly and it was horrible. It has eased a lot. I also added some pepto bismol this week. I don't know if this helped, but I do know my pain is lessened. All these weird pains seem to come with C diff for some of us. I think it probably will just take some time for the body to get back to normal. I hope you feel better and take a little time for you. Maybe a hot bath and movie with a heating pad to relax.

[getwellsoon]

Sarah, Have they okayed you to take something like Tylenol or Advil. I had the pelvis, hip and leg pain and my foot was going numb. I thought it was my back acting up but it took my neurologist to tell me it was my colon pressing on the sciatic nerve causing it all. He said it doesn't take much swelling of the colon to cause this. The Advil helped me alot. As for the mucous, I developed mucous colitis post CDiff and had it for over a year. It is finally gone with the help of Metamucil. Thats what the colo-rectal Dr. recommended taking and it helped so much. Its really scary to see just M, I was convinced the Cdiff was back and I also felt so sick. CDiff causes many changes. I am like Bobbie, I was healthy as a horse before CDiff, now I have one symptom after another and don't feel well a lot of times. I still thank God I feel as good as I do but I am almost 2 yrs. post Dificid. It took over a year before I felt human. Hang in there, it will get better, it just takes along time for some of us unlucky 20%. Carol

[AllisS]

I had written a longer reply last night, but when I submitted, it disappeared! This has happened to me a few times on the site. Don't think I can reconstruct from memory. All I remember was saying that I thought your symptoms were probably not due to fibromyalgia, since (if I'm correct) that's a systemic/immunological disorder that would affect multiple body systems and wouldn't be concentrated mainly in GI area. Carol mentions Metamucil; a colorectal dr. recommended that for me, too, a year ago. I'd used the powder form of that and Citrucel on and off; he suggested the wafers, which are easier to take: they taste like cookies and you drink a glass of liquid, e.g., water, with them. I've found those to be quite helpful. Hope you feel better soon.

[saraht]

Hey guys! Thank you all for the responses. Sorry I haven't had a chance to jump on all day, been so busy. Feeling a little better, BMs are a little better, less M, still having some pelvic cramping. I have a prescription for ibuprofen for the cramps but it doesn't touch it. It just seems so weird to me to have a formed BM but still have M. I know we naturally have M but its usually within the stool, and dont notice it. I have taken Metamucil before back when I was in remission the last time I had an episode where I couldn't go well. I'm going to start taking it every day again just so my GI tract doesn't work so hard. I think maybe I am bordering IBS-C.

I think I ate something that wasn't agreeing with me as well. My grandmother had a retirement party where she worked at a building for older people that doesn't need assisted living, but can't live on their own. I guess like a retirement home. I reluctantly grabbed some veges to eat from the food table, maybe that did me in. It's taxing seeing people chow down on food, and not worry about who's hands touched what. That's all I think about.

AllisS, sorry I mistyped but I do get body aches all over, not just my abdomen. The abdominal pain is something all on its own, then the body pain that comes and goes. It seems to hit more like before my monthly visit or after it. Or when I am ovulating. All the stuff we have to deal with as women is exhausting!

I have a heating pad, have yet to use it, I need to find it first. I've thought about the anti-spasm meds, awhile ago before I understood any of this, my GI asked if I wanted something for them and I refused. I might call and ask for some. I am just tired of taking meds. Tired of seeing drs, you know when you get to that point where you just want a break, lol. I'm trying to give stuff time to heal and get back to normal, or as normal as things will be. Nice being in the 20% right? We should make our own club.

Thanks again everyone, I see my Endo this week to see where my thyroid levels are sitting, I'll ask her some questions and get in touch with my Neuro, then go from there with the rest of the specialists.

[wen23]

I know how you feel about the whole food issue. Right after my recovery I went to a fancy restaurant with a friend and we were in view of the beautiful open kitchen. I saw our waiter grab a handful of croutons out of a container with no gloves who knows what else he touched.Then bought the salad to our table.Needless to say I went home hungry. I hope things get better for you. I know how you feel about the whole mucous situation I freak out all the time when I see it. Have you asked about Questran. I'm not a doctor or anything but it has helped me along with the occasional Metamucil wafer. Watch the other meds when taking questran as they have to be spaced apart either one hour before of four hours after taking questran as it binds things. Praying for you. wen

[beth22]

Sarah - I see a GI motility specialist for SIBO and he has done some extensive research about fibromyalgia and SIBO and found that a majority of people who have SIBO, which is one type of IBS, have it. So do a lot of people with IBD, so somehow it is connected to the GI tract and seems to come about when there is some type of ongoing GI problem. I went to a rheumatologist because I was having the body aches and joint pains and I was negative for arthritis, just some osteo here and there, but he diagnosed it as fibromyalgia. So, you are not crazy. Research has shown it to be the case.

Pepto helps me with M sometimes, but I see it more when I am C. The regular Gi I see said that is because it is your body's way of trying to help the bms along - making it easier for them to come out. I guess it makes sense. I don't like it either though. It does mean inflammation, but inflammation is not desirable obviously, and can be causing some of your cramping perhaps.

[seekingcure]

Liz, that's interesting about IBS and fibromyalgia. I've had IBS for years and did have a doctor diagnose me with fibro at one time. I do remember that every pressure point she pressed on was sore. I took muscle relaxers for awhile, which helped. It's amazing how much a sick gut can affect you, both mentally and physically.

[shopgirl5]

Sarah,
I am sorry your going through so much with cdiff and after. Especially when your trying to be a mother. Like Bobbie said, some people have more issues than others. I am that way too. It's very frustrating when you are supposed to be getting better. Friends here and otherwise have told me to take one day at a time. Try not to group all symptoms together, but that is hard. I say take in minute or breath at a time. Sometimes I have pains, here and there, symptoms like headaches pain in my belly, rectal spasms, IC, blah blah. I have severe anxiety so I freak out. The best thing is to face one issue at a time. Give yourself rest and time to heal for each. I'm not the greatest when it comes to dealing, but it sounds like you are doing everything you can do. I still have times when I think I am relapsing. I think we all do. Things tend to flare up with my cycle like UTI, IC, looser stool. I don't have any explanation for it, other than inflammation irritating a area packed with lots of things like bladder, colon etc. I tend to get a UTI after my cycle, and have considered an ablation. I know that exercise helps with fibro like yoga, and after 10 mos. my IBS is waning. My GI said I have SIBO but doesn't want to treat. A nice site the cfierro told me about is Earth Clinic. Of course you should check with your doctor first. Also, my allergist just gave me vegan pre and probiotics as well as fish oil, an vitamin D. I like many don't like to put to many ingredients in the pot, so I going to start one thing a week. Try to rest, and thank you for being kind and strong. Wendy

[justme]

March 8th was my one year anniversary of my first day off flagyl and start of my recovery from active C. Diff. Wednesday, March 5th at 1:40 am, I got up to go to the bathroom and couldn't get out of bed. My right side was paralyzed. A quick ambulance ride to the hospital found me in the ER and a diagnosis of a stroke. I recovered very quickly so a TIA was suspected. I regained full use of my right side, speech and fine motor skills by about 8:00. After an MRI (and Echo Cardiogram), a TIA (minor stroke) was confirmed (along with a lot of brain scarring from the SCA I had 7 years ago). I had celebrated my 70th birthday on February 2nd, but this particular birthday present was not greeted by my squeals of delight! Because I had never taken a follow-up stool test, the hospital took appropriate steps to semi-quarantine me (suited up with gowns and gloves, etc.) and strict instructions to cr*p in cup were given when I got to my room. Fortunately, the results came back the next day and I was "negative" for C. Diff toxins.

My 3 day stay in the hospital was trying to say the least. I am very tiny boned and slender. Most of the nurses (and students) had trouble finding my veins for the IV tube and I have about 13 healing holes in my arms where attempts were made and abandoned in the hope of finding a better vein. I am now back at home recovering "again" but at least I am negative for C. Diff.

My C. Diff recovery has been long, difficult, and is still ongoing. I usually have 3-6 BMs per day, depending on what I eat, but they are normal in consistency. However, my colon is still sensitive and I've pretty much abandoned sweets, dairy, and green vegetables. I would really like to reintroduce green vegetables, but I remain wary. Acid reflux remains an issue, but I am keeping to a lower dose of Prevacid and using more calcium carbonate type antacids (Tums and Mylanta) to help with my aging bird bones. I may have to go off the Estradiol because of the TIA and add a bone density supplement (and who knows what that will do to my sensitive system).

Thanks for giving me an outlet to vent. Getting older sucks (big time), but it is better than the alternative. And . . hopefully my colon will continue to heal and I will not every have to go on another antibiotic.

[beth22]

So sorry for what you have been through. Is there any way to prevent a TIA - medication or something? I know my mother has had many of those. She is on a lot of meds and I don't know if any are for that. I'm glad that you were c diff negative. I had been struggling with IBS type issues for a few years post a stool transfer, but was only going once a day, normal bms up until 3 weeks ago when I was given an antibiotic (Levaquin) for an URI. I took vanco along with it, which was a mistake. I don't feel well at all. I truly hope you can stay away from having to take an antibiotic. I did not think it would cause this much damage, but with our sensitive systems, I guess it does. Good luck and please feel free to vent any time you wish!

[justme]

Beth22:
At the end of 2012 when I took a series of antibiotics over a relatively short period of time for various issues, I was rewarded with C. Diff (the last antibiotic was Cipro for a UTI). UTI's have been the bane of my existence for a long time due to a urethral stricture. When the Cipro was diagnosed, I was told by a urologist to drink LOTS of water daily to flood my urine and keep it clear so bacteria does not have a chance to take up residence. So far, I have followed that advice and have been lucky enough to keep a UTI at bay. That's the up side. The down side is having to visit the bathroom numerous times per day and it interferes with traveling anywhere, etc. I always have to be sure I can reach a bathroom quickly wherever I go. I have never been one of those people with the bladder of a camel so I'm pretty used to it. One can, however, drink too much water, but that is pretty hard to do. The other problem here in Hawaii is bacterial bronchitis due to the nearly constant volcanic eruptions on the Big Island. When the wind blows toward us, the cases of bronchitis skyrocket. We call it Vog and antibiotics are usually prescribed for the bronchitis. Asthmatics are the ones that suffer the most.

[beth22]

Those erruptions have a lot of stuff in the air to be sure. Years ago when I was there, I got allergic conjunctivitis from the erruptions. When we went to Honolulu, it went away in a day or so. I remember it being very irritating to the sinuses too. So sorry you have to deal with that too.!

[wen23]

Hi since we are venting I think I'm going to vent. Remember me I,m wen23. I have been eight months since my last dose of Vanco. I haven't disappeared completely but I can't say I can post in success stories yet. Since cdiff I have been on a steady diet of questran and bland foods . Sporadic D w mucus but nothing to write home about. Well for two days have had nothing but D . I am at my wits end and have picked up yet another cdiff test cup. I have an appt w my GI at the end of the month and another appt w the radiology clinic to do a pelvic ultrasound for persistent pain below my belly button. I'm praying it's not cdiff as I have done nothing to make it flare up (no antibiotics) so when I see my GI I am thinking of getting a colonoscopy but am hesitant it might disturb my flora. any thoughts? I live on the big island and the vog really doesn't bother me but it wreaks havoc on my sons respiratory system.Hope all is well with everyone wen23