Extremely frustrated today :(

Hey There. I am sorry to hear about your struggles. I see that you are still very early in your recovery process. Although I'm sure it feels like forever and if you've suffered with a stomach disease for a while you just want it all to be over now and be better. I have good and bad news. The good news is it gets better YAY!! The bad news is that sometime it could take a year or more to feel like yourself again. I am now 1 year and 3 months from my takedown and I started feeling like me again at about the year mark. It's unpredictable because we are all different so you cant really tell someone when they are going to start to feel better. One thing I can tell you which I know it's easier said then done but try to eliminate the stress o thinking about your pouch all the time and asking the question "when will I get better?" because I know from experience that this only makes things worse. I had the problems you had. Never pouchitis thank God but other issues such as leakage, multiple trips to the bathroom at night, feeling like I had to go and then when I got to the bathroom nothing would come out. I also had to get dilated for a stricture 3 times, twice under anesthesia. I was also hospitalized twice for a blockage (totally not fun). There are a lot of ups and downs throughout your journey and the peaks and valleys are going to feel like theyre miles apart. The way to start to feel a little normal at this point is to do normal things you would usually do. Keep you mind occupied. Do things you have fun doing or things that relax you. All of this helps I promise. When you start to take your mind off of your pouch you will have a better experience and like I said I know this is all easier said then done but at least I can tell you from my own personal experiences. One last thing keep your Surgeon or GI dr or whoever sees you now informed at all times. Don't feel like you are bothering them if you feel something is wrong. It's your health and your life and you want to feel as good as you can. If you have any questions you can email me at anytime. Good Luck on your journey. There is a light at the end of the tunnel, just some of our tunnels are longer than other.

Thank you very much for the encouragement. Is it normal to get pouchitis this soon and have the symptoms come back after antibiotics, I wonder?
I'm extremely fed up with leaking all the time! Did that go away for you? I want to take my toddler to swim lessons, but I don't feel comfortable in a pool. I take her to the beach, but I wear regular clothes instead of a swimsuit....May not seem like a big deal, but we live close to the beach and I'm used to being in a swimsuit all summer.
I'm definitely not shy about calling my surgeon, ha! They have heard from me quite a few times!
Thankfully my problems have not stopped me from going out more. I found a play group for my daughter and we really hit it off, we've been meeting since right before my takedown in January.
Calling my surgeon this morning to see if I can do another round of cipro.
Thanks!
Katie

quote:

Is it normal to get pouchitis this soon and have the symptoms come back after antibiotics, I wonder?

If the symptoms come back then you probably still have pouchitis. 10 days of Cipro at that dose just wasn't enough for you. While it's possible you'll simply have to stay on antibiotics to feel right, it's far from certain. You do need more treatment, though. Some surgeons have the knowledge and patience to deal with this, but others of us have had better results with knowledgable gastroenterologists.

You can augment your antibiotic treatment a couple of ways: aggressive use of bacterial probiotics (VSL #3 DS is the best-studied one) seem to help prevent pouchitis. A low-carb diet can also help some folks. The VSL has the greatest impact when you're not on antibiotics, but I also find it useful even while taking antibiotics.

Besides pouchitis, you should also be checked by your GI doc for SIBO (small intestine bacterial overgrowth)

Thanks everyone. My surgeon wants me to do a month of cipro and see if that takes care of it. I live in a small town and I don't think the GIs here have much experience with J-pouches. I had a rift with my previous GI and there's only one other group in town. Anyone know a good GI in the Boston area who's familiar with pouches?
Thanks!

I'm sorry to hear that you are having so many problems and have felt so frustrated. I'm only about 12 weeks out from my takedown and I had to do a round of Cipro already too. It seemed to help. Like Scott suggested I also take one packet of prescription probiotic each day. It's VSL3-DS.

I have had many many issues with pelvic floor pain, feeling urgency (urine &BM's) and not being able to go.....I can't even tell you how many times I've cried and had my own pitty party since these surgeries started.

My surgeon is now thinking that my uterus is putting too much weight on my pouch which is causing the pains, urgency issues. He thinks my pouch is trying to expand and doesn't have room so is pushing on my uterus and bladder. I see him again next week but at my last visit he said I may need a hysterectomy. Very disappointing to say the least.

I've also been dilated 3x since takedown.

I don't really have any advice for you -except maybe your doctor can check to see if a "room/space" issue could be contributing to your pain too. My doctor said during the last endoscopy, my cuff looked like it had a little ridge. He pushed up on the uterus (with his scope from inside the pouch) and the ridge went away and some blocked stool drained. He then ordered an ultrasound to measure my uterus and we are going to discuss those results next week.

I know how totally frustrating and depressing this situation and these pains can be. I'm so sorry you are feeling like this too but please know that you are not alone and hopefully, as others have stated, this is only temporary. Everyone keeps saying a year but that's a long time to live like this.

I hope you get some relief and feel better soon. Please email or message me anytime if you are down and just need to talk to someone who knows exactly how you are feeling.

Take care and good luck to you,
Wendy

I am going through the exact same thing. I just had my takedown in March and I got an immediate onset of pouchitis. Every time I go off Cipro the pain and urgency comes right back. I am going to see Dr. Bo Shen at the Cleveland Clinic to see what he thinks. Maybe I just haven't been on a long enough course of antibiotics. I would try and find a GI that is familiar with pouchitis. If you can make the trip to Cleveland, Bo Shen is the GI that does all the studies on pouchitis.

Wendy, I'm sorry for what you're going through, how awful
I wish I were closer to Cleveland Clinic, but if I ever need to go there, I won't hesitate! My family is about 3 hours away, so I could make it a family visit too, ha.
Keeping my fingers crossed for this round of cipro and for everyone else suffering this sucky complication.
Katie

Hey Katie,

We are on the same timeline, and though I don't think I have SIBO, nor have I had pouchitis, I have had similar ups and downs. I started taking Imodium 2 weeks ago, and for a few days, I too hardly thought of my pouch. Then the bottom dropped for four or five days. Gas, urgency, pain. The trifecta. But a few days later, back to (mostly) good. I'm noticing two things: 1) I still have alternating good and bad, but rather than alternating hours or days, it's starting to be alternating days and weeks, which I think is a good sign. 2) because I'm staring to get so much good time, it's making the bad time much harder. And I've even noticed that my bad time now is nowhere near as bad as even a month ago, but because I can see some freedom ahead, it's almost excruciating at times. It's a harder emotional struggle than physical at times. The only advice I have is to think about how much patience you had to have in the beginning, and however you can, find the same patience for yourself now. I wish I had advice on how, as I still struggle with it, but when I succeed, all is much better. And when I'm less stressed, the pouch also does better. Good luck!

Tok

When you guys talk about pain, what kind of pain are you talking about? I'm trying to see if it's the same kind of pain I'm getting.

Thank you.

My main pain is gas pain, but I can have anal pain if I aggravate my hemorrhoids. On bad days, I will have what sound similar to the pelvic floor pain you describe, but it's pretty uncommon, and usually if I'm exhausted.

Amstobar, yes, when I was on cipro the pouch was like a dream come true, which made it so much more frustrating when the symptoms returned! I had been living a decent life with those symptoms ever since takedown really, so knowing how awesome it could/should be really got to me!
Back on cipro again, so far so good.
The pain I was having was mostly pelvic floor pain, I'd get it at the slightest push and it would last seemingly all day, worse in the evening. It would hurt just to sit, to do kegels, etc.
katie

It is still early for you and will be a bit before you are feeling yourself! But sounds like you do have pouchitis. I did 4 months of Cipro 500 bid (twice daily) If I have a flareup I start it again. I had my last takedown in 2009. I still have some leakage and notice that stress makes it worse or eating after 7 pm. (that's my schedule) Don't be afraid to go to the beach, just make yourself aware of where the bathrooms are first so you are not worrying the entire time. I do understand A bathroom is the first thing I locate when away from home. Ask you doc for refills on the Cipro so you can start if you feel a flareup coming on. Also, I am not a GI person, I prefer a colorectal surgeon. Mine studied at Cleveland Clinic under Dr. Fazio and he is amazing. CC has some of the very best in the country! Mine is in NOLA now, but I do not hesitate to contact him if I need him.

Hope you are feeling better!

My surgeon studied at the Cleveland Clinic and I don't go back to him for j-pouch problems since he only does straight scopes vs flexable scopes. He did an excellent job surgically but prefers doing the surgeries and leaving the problems to GI's.

Wendy, please do not let your surgeon talk you into a hysterectomy as a correction for your pouch without getting a great second opinion from someplace like the Cleveland Clinic, Mayo's , John Hopkins etc. I don't know how old you are, if you want to have anymore children or what your story is. However I have had a hysterectomy and it isn't a little surgery. It also can throw you into early menopause, depending on your age and if your ovaries are taken too etc.

That said it was my OBGYN that finally diagnosed my UC in a round about way. I told him I was still having cramps after he removed my uterus. So I can understand why your surgeon may be saying that. I'm questioning his/her reasoning. If you need the surgery then having it makes more sense. I had my ovaries removed during my colonectomy as they'd quit working. The only thing they could help me with in the future was cancer.

Good Luck to everyone.

I too am going through the same complications Bebekspor! I had my takedown at the end of March and have been having problems ever since. The cipro also makes me feel a lot better and I was put on it for a 7 day course and once I was off it I started to have urgency again. I am now doing a month of cipro as well to see if that clears up the pouchitis better. The cipro makes me feel good, but I am scared to be off of it.

I am scared too, because right now life is amazing (except for the leakage that won't go away). It's so much better than before, I'm loving the cipro. Hope a month long course takes care of it this time!
Katie

I had my appointment at CC last week. Have you been tested for c-diff? Every time I got off Cipro I would experience pain and urgency. I thought it was the pouchitis that kept coming back when actually it was c-diff caused by the Cipro.

Hmmmm could it still be c diff if I have been having the problems since takedown really? I'll keep it in mind. I get scoped (yay) at the beginning of August so I can ask.
Katie

You can get tested for c-diff by your regular doctor. All you need is a stool test. It needs to be at least 14 days after taking any antibiotics or it with give you a false negative. I wouldn't wait until August as it's an easy test. I've had c-diff several times since takedown.

My GI discovered it the first time he a pouchoscope a year after takedwn, as he also collected a stool sample. I had cuffitis and c-diff at the same time. I'd been suffering for months thinking the first year was supposed to be rough. I should have complained much sooner!!!

P.S. I can never take Cipro as when I had my colon I got c-diff the first time after taking Cipro.

I agree, don't wait. I had untreated pouchitis for a month before finding out it was C. diff, and was back to normal within a few days of starting vancomycin. It's an easy test with a HUGE upside.