Pelvic pain, persistent diarrhea following surgeries: looking for help

@amontee: I’m sorry to hear about your surgeries and now your ongoing GI issues. I’m curious if you had antibiotics prescribed post-op; if so, did your abdominal symptoms and diarrhea follow shortly afterwards? Sometimes this can lead to a condition that causes symptoms such as the ones you’re describing.

I’m asking as I experienced similar symptoms after I’d been hospitalized this past fall - in excess of 15 bouts of loose stools per day accompanied by urgency. I subsequently had stool testing that determined the initial issue, followed by more diagnostics in my case. The frequency and urgency gradually improved but I’m now steady and holding at a 22 lb weight loss while following the care of a GI who specializes in my identified condition.

Am I correct that UAB is University of Alabama? Are you able to consult with a gastroenterologist on staff there or locally?

@grammato3 has great insights!

I’m so sorry you are being dismissed.

That happened to me too.

Sadly my understanding and experience is that you must raise hell and in my case even “lie” to get proper treatment. (Finding the right symptoms to speak of are like keys to unlocking passage to the right tests. As I was “too young” to have what I have, they wouldn’t look for it so I had to do this.) I was disregarded a million times until they would do the right tests. Have you had a pelvic ultrasound done? I would find a way to get one of those, (speak of the truth in your case and extreme cramping, bleeding, bloating, irregularity, blood in stools) or even pay for a private PET scan and /or full body MRI. Hang in there and fight for answers! We are with ya! 💛

So sorry. Is the stool foul smelling? C. dif infection after antibiotics is a real thing. C. dif. is usually liquid type stool, not formed. Even if that isn't the issue any antibiotics or bowel prep can change the microbiome. Culturelle is an easy to find probiotic that can help re-populate the gut. Introducing new strains can also cause gas so I would suggest starting low and increase over a period of days if you tolerate without more gas or bloating. I wouldn't bother with special run of the mill yogurt, in case that might be something to bother you. Have you seen a physical therapist that specializes in pelvic floor? I have run across many therapists that are really smart. They understand how parts work together and might have some insight. I wish you strength as you advocate for yourself. Your symptoms are real even though the doctors haven't figured it out yet.

@grammato3 I hate to hear that anyone is experiencing anything like this but I hope you have gotten some relief. I was prescribed a lot of antibiotics before the hysterectomy for a complicated kidney infection and then a couple weeks after the hysterectomy because every time I called my Dr they would immediately say it was a UTI which actually ended up being a cuff infection and not sure if that actually contributed to the development of so much scar tissue.

I was finally able to get tested by my GI 2 days ago after a trip to the ER Saturday because I have not eaten or have any desire to eat and my CT scan showed diffuse gastroenteritis with an inflamed liver and mildly prominent spleen but they treated me like I had a stomach bug. They did rule out bacterial infections and the GI tested for C.diff which is something I worried about with the antibiotic use. The GI actually wrote me 2 antibiotics (Cipro & Flagyl ) to take and I was hesitant before getting those results and still am because I am not sure why I would need so many antibiotics if it’s not a bacterial infection. I feel like my GI Dr is treating it like a stomach bug as well but I’m pretty sure it isn’t. They did test me for Chrons and UC but no results yet.
I just don’t like my local GI. I called to tell them everything I was experiencing and they told me to drink Gatorade until April 8 which would have been a month without eating and all the pain I’m in. My right side feels so inflamed right now. I see why they have a 2.8 rating now. I do have a EGD scheduled for the 14th but I’m hoping I can make it until then. I’m having some pretty severe symptoms but the way the treat me here makes me afraid to go to the ER or even call the Dr office.

UAB is the University of Alabama and they are phenomenal! It’s just hard to travel 4 hours with my current GI symptoms. I am seeing an OB and I have a GI appointment set up for May but these problems escalated fast. I wish UAB was closer not only for the care but also because my local doctors keep putting me through a lot of unnecessary tests that cost me so much money and dismiss me when UAB didn’t cost me a dime for a $10k emergency visit and actually listened.

@keirahaley I can see where this would definitely be needed sometimes. It’s insane how they dismiss someone that knows what is happening in their own body! I think I have had a pelvic ultrasound 🤔 I know they did one to check my ovarian torsion and then when I was having pain again they did. If that is the same thing. Then they did the one for the gallbladder and I asked them to move it to the place that was actually hurting me and they wouldn’t. I knew it wasn’t my gallbladder but I went through several tests for that. I have joked about a test that can scan the whole body but you mention a full body MRI… is this a thing? I have read about some type of abdominal MRI and think I need one though. My next test is EGD and the HIDA last week was $615 co-pay and this one is $935…they killing me! I’m out of work and it would be ok if they would actually be figuring things out. My heart goes out to all of you in this situation 💛 I love food and would love to actually want to eat again!

@amontee: this all sounds so terribly frustrating and painful to be going through. I am finally getting some relief but I can tell you I suffered through many weeks of discomfort - I compared it to labor and colonoscopy prep 24/7! It did take some time to sort through my issues which were a compilation of three GI factors: C-diff -or at least colonization of the bacteria while the next problem was brewing: CMV colitis that was determined via sigmoidoscopy with biopsies requiring antifungals administered via PICC line for several weeks. Ultimately it was also determined through a subsequent sigmoidoscopy that I had immune checkpoint inhibitor colitis for which the immunotherapy I'd been on for my metastatic melanoma had contributed. I must underscore that this was a very unusual case; in fact my GI who specializes in rare gastrointestinal illnesses had never seen such a presentation. But I do have to say a thorough workup is key and if you feel you need greater intervention for ongoing symptoms you can certainly pursue other opinions. Could UAB provide you with a list of practitioners there for follow up?

Imaging such as a CT can definitely show inflammation in the colon but is less clear on the cause. Did you get the results back of the C-diff panel? Sometimes that can take up to 5 days. Has any provider suggested performing another sigmoidoscopy or colonoscopy? Or perhaps testing for fecal calprotectin? Those may be a considerations worth exploring.

I've been a patient as well as a nurse and in both situations I have to stress the importance of relaying your symptoms, past history and treatment as thoroughly and truthfully as you can without minimizing the pain you've experienced. This is important for medical staff to assist in providing the most appropriate diagnostics and treatment plan with your safety in mind. I'd also caution against taking any medication, including over the counter (OTC) recommendations as - while they may be helpful in certain circumstances, until you are certain of the actual condition you are dealing with - that might be Crohns but would require additonal testing and for which probiotics have demonstrated limited effectiveness - you' be best to avoid anything that could potentially cause more bloating or in any way exacerbate symptoms.

I totally empathize with what you're going through and hope you find the best intervention soon. Please keep me posted.

Oh my! You have been through it. It is so frustrating and hard especially when I was so used to being active and now out of work on medical leave because I cannot work. An update is that I have now worked with 2 GI doctors, a general surgeon to rule out gallbladder and then I made a trip to to UAB over the weekend after I felt like I was dismissed and in extreme pain the week after a CT I had at a local ER showed diffuse inflammation in both intestines, liver and mild inflammation in my spleen that got worse over the week. It did get my local GI to get me in faster instead of telling me to drink Gatorade after I hadn’t eaten or wanted food for 2 weeks and rapid weight loss with other severe abdominal pain and as soon as I would force and food like egg drop soup ,chicken noodle, or plain rice, it would cause explosive diarrhea within 3 bites. The rice would come out completely undigested the next day and tons of mucus. They scheduled a EGD brush wash locally for April 14th and gave me a Levsin for pain and said take Tylenol. My pain continued to get worse so I went to UAB and the ER Dr remembered me and could see the weight loss and said I needed to be admitted. Strange that the CT one week later did not show the inflammation but shows only a Focal fat adjacent to the intersegmental fissure which hasn’t been seen on previous CT scans. Every CT has been clear besides January where it showed a slight stool burden but I cleaned it out. 2 scans since then showed nothing until the diffuse inflammation of bowels, liver and mild spleen inflammation. When I was admitted and student GI doctors took over, things went south. Even though the CT did not show a stool burden, they ruled it as a moderate burden in my large intestine which really made no sense to me but I allowed them to admit me and then went through the most excruciating pain with an enema given by a tube for 4 hours in a gut that had been irritated and in pain for weeks in a busy ER. The last hour I spent crying after a young nurse moved it for me and since they usually do not give these in the ER, she did not move it properly and it made it start leaking and the position was like fire inside and out. But, I was told be the students I would get a biopsy done so I endured it. I was certain there was no blockage so this would rule it out and even a veteran nurse that came in on next shift and helped remove it because the other nurse couldn’t even deflate the balloon wondered why I was even getting the enema when my scan was clear. She had already seen my notes prior to coming in and tried advocating for me but I guess they shut her down. I ended up seeing a team of 6 GI’s come in but not the initial 2 students that mentioned biopsy and they said they looked at my CT and ruled it as a stool burden as well so the plan was to continue giving me oral laxative and senna when admitting me. This would have been ok but I waited until I could not handle the pain any longer with pushing in my abdomen and asked for pain medication and they again wanted to give me Tylenol. I decided to look at the notes to see the care plan and that was it. Why am I paying a $25k+ hospital bill after traveling 4 hours and my husband missing work for them to give me laxatives and release me the following day on MiraLAX I told them I already take at home and senna that their own outpatient GI doctor told me not to take that also had a clear GI scan on March 9? I left because we have spent way too much on non-sense already. I was really hoping for the colonoscopy with biopsy there but they let me down. I just can’t seem to find answers. Local Dr is treating it like stomach flu when bacterial infections are ruled out and immediately prescribed 2 strong antibiotics that I don’t want to take. Waiting on calprotectin results and it has been 1 week tomorrow for that. Then UAB treated it as a moderate stool burden. My inflammatory makers are ok. But my right side has excruciating pain and now my left side under my rib cage. I’m exhausted mentally and physically. My heart goes out to all of you dealing with this stuff. It affects the quality of life and it’s not ok. I pray for everyone here ❤️