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Experiences with bowel spasms causing bladder and uterus pain (cramps)

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Ulcerative Colitis
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Posted 5/13/2016 10:30 PM (GMT 0)
I am wondering how other women are managing the bladder and uterus pains (cramps) that *can* come along with UC.

My doctor explained this can be a problem, as an inflamed and cranky bowel irritates the other adjacent organs.

He gave my Bentylol (an anti spasm drug). Not liking how it feels when it wears off.

Thinking I might rather try cortisone enemas or suppositories.

Any feedback is much appreciated.

Post Edited (emmalouwho) : 5/13/2016 8:31:35 PM (GMT-6)

Posted 5/13/2016 11:00 PM (GMT 0)
I'm having bladder issues as well.
I have not told my GI cuz I have been forgetting. But my pcp has tested me for uti several times and came back negative despite symptoms. I am going to see a urologist he recommended
I will try to update when j have more info
But my bladder spasms and I have urgency but can't pee
Posted 5/14/2016 2:31 AM (GMT 0)
I've done all that, too.

So far, I have seen a Urologist, OBGYN, UroGyn, GP visits. I've had UTI tests, and pelvic ultrasounds to see if my Mirena IUD (for my super heavy bleeding) is in place. (It is.)

The GI doc (this is my 2rd now) has said that the same nerves (sacral plexus) that innervates the colon also innervates the uterus and bladder.

So when the colon is angry, the other organs get irritated too.

I'm very happy that he took the time to explain it to me, as the prior GI doctors were very rushed and didn't offer me information about this. re: bladder pain and uterus cramps with BMs actually coming from the COLON, etc.

I may try to get some cortisone suppositories and enemas from my GP tomorrow (weekend walk-in) or early next week.

Hope you can get medical attention from your GI doc on this too, Dikid. Feeling like labour is starting is not something I can live with.
Posted 5/15/2016 2:59 AM (GMT 0)
Thanks for sharing that.
Someone just mentioned Botox to me but it's obviously thinking ahead becuse I haven't even seen a urologist yet.

Is that an option for you?
I have not told my GI about this becuse when he asked me if there were any urinaru problems I said "no" without even thinking about it
I don't know why I did that and I regretted it immediately but I felt too stupid about it to correct myself.

I will update when I see my urologist so that if I learn anything useful for your issues it would help.

I hope you can get relief. Cuz it sucks, kind of like tenesmus but with bladder not rectum.
Posted 5/15/2016 5:19 PM (GMT 0)
Hey Dikid,


My main goal is to get this *inflammation* down and then work on treating the *underlying disease* (UC). That is what causes the pain and other effects.

The Bentyl pills work to stop the spasms, but I see them as just a BandAid. BandAids are good tools if we have to cope while the disease is being treated and we are waiting to heal, but I'm wary of not doing more.

The colon is spasming and freaking out b/c it is sick, right? And I'm big on getting to the core of a problem.

re: Tenesmus as you mentioned

That reminds me: I was saying to my GI doc that I had Tenesmus with my 1st Flare and that tenesmus seems analogous to the 'dry heaves' of vomiting. Body wants to do it and get whatever contents out, but there's nothing to expel.

I'm going to go with the Anusol HC suppositories (I'll try to get an Rx this week) and if they don't work well, ask for a cortisone enema of some kind.

Emma

Post Edited (emmalouwho) : 5/15/2016 11:45:37 AM (GMT-6)

Posted 5/15/2016 6:57 PM (GMT 0)
yup sounds good
You might want to try advancing therapies like immunomodulators instead of steroids (I'm a steroid hater as it has impacted my body so badly)
Posted 5/15/2016 8:18 PM (GMT 0)
Thanks.

I'm on Imuran 100mg . Mainly waiting for it to work. So far it's taken me from a WBC (white blood cell count) of 15K down to 10K now.

Hoping to get the dose down on that.

How long have you been on Imuran? How is your WBC? do you feel it helps? (I notice you are on a higher dose of Remicade.)

Emma
Posted 5/15/2016 8:34 PM (GMT 0)
It seemed my body was totally inflamed. When I got the inflammation under control most issues went away. It did leave me with unspecified neuropathy. I hope you find relief soon. Unfortunately I'm flaring again and eye, bladder, sores, cysts, scalp and more come with it.
Posted 5/15/2016 8:36 PM (GMT 0)
And of course UTIs
Posted 5/15/2016 8:37 PM (GMT 0)
It seems like so much with this disease is really a 'balancing act' between controlling the inflammation and managing/avoiding/minimizing the 'side effects' of the medications.
Posted 5/15/2016 10:04 PM (GMT 0)

emmalouwho said...
Thanks.

I'm on Imuran 100mg . Mainly waiting for it to work. So far it's taken me from a WBC (white blood cell count) of 15K down to 10K now.

Hoping to get the dose down on that.

How long have you been on Imuran? How is your WBC? do you feel it helps? (I notice you are on a higher dose of Remicade.)

Emma

I started the imuran just days after starting the remicade so I can't differentiate between what is doing what for me. I know that it helps prevent antibodies and research shows that combo of the two is more effective. My wbc count is ok. It was borderline too low a couple months ago but better now.
I am doing double dose remicade because after initial dose I improved drastically and than a few days later started to regress they did the second dose early and doubled it. As of now we are discussing doing the remicade more frequently to avoid flares by the end.
Would you consider biologics at this point? I didn't realize that you were in imuran.
Posted 5/15/2016 10:13 PM (GMT 0)
My GI says I'm not eligible.

My tailbone and pelvic organs all feel like they are on fire due to inflammation. It's even affecting my bladder and uterus (bleeding) -- when the anti spasmodics the GI doc gave me, wear off.

BM today was skinny like 2 pencils. Not normal. (My one friend has CD and has told me all about how to be a Toilet Detective. e.g. skinny poop can mean inflammation, etc.)

Trying to transfer from my regular GI doc to a proper IBD program at a hospital...

Emma
Posted 5/15/2016 10:21 PM (GMT 0)
What makes you not eligible for biologics? Insurance or health conditions or other?
Posted 5/15/2016 10:30 PM (GMT 0)
My GI doctor said I wasn't sick enough. I am usually at the ER at least 2x/month with abdominal pain. (He sees me monthly since my Pancolitis diagnosis in Feb 2016).

I'm in daily pain though, and it is spreading to my groin, tailbone, bladder, uterus and my uterus is cramping and bleeding daily now. He gave me an antispasmodic (Bentyl) but it is making me fall asleep. It is taken 4x/daily. He says the colon spasm from it being sick is making me get the bladder and uterus pains.

I don't know what my BMs are (#) because I"m on Tylenol #3s (constipating) and I don't have bleeding now. -- they do the scoring of disease activity by blood and how many BMs/day.

I am finding this intoelrable and want my disease fixed ASAP, which is why I want a proper IBD GI sub specialist.
Posted 5/16/2016 12:15 AM (GMT 0)
Emmalouwho-- definitely pursue treatment with an IBD subspecialist gastro. Anusol suppositories will not rid you of tenesmus, which comes from inflammation of the rectum. You need a foam or retention enema for that, at the least. Be sure to get urinalysis at least every 6 mo. + gynecologist exam for troubles with those organs. I know it's time-consuming & expensive, but we cannot depend on gastros to know everything about female organs, nor on gyns to understand IBD. I say this having experienced a major ordeal from fibroid tumors. It IS interesting, though, that your recent doc mentioned the sacral plexus as a source of pain in all 3 organ systems. I used to feel like my bladder, colon, & gyn organs were all fighting to occupy the same space & two of them were always about to lose the battle, ugh. Getting your UC inflammation under control should relieve the "neighboring" problems, IMO. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/16/2016 1:17 AM (GMT 0)

emmalouwho said...
My GI doctor said I wasn't sick enough. I am usually at the ER at least 2x/month with abdominal pain. (He sees me monthly since my Pancolitis diagnosis in Feb 2016).

I'm in daily pain though, and it is spreading to my groin, tailbone, bladder, uterus and my uterus is cramping and bleeding daily now. He gave me an antispasmodic (Bentyl) but it is making me fall asleep. It is taken 4x/daily. He says the colon spasm from it being sick is making me get the bladder and uterus pains.

I don't know what my BMs are (#) because I"m on Tylenol #3s (constipating) and I don't have bleeding now. -- they do the scoring of disease activity by blood and how many BMs/day.

I am finding this intoelrable and want my disease fixed ASAP, which is why I want a proper IBD GI sub specialist.

Yes you are very correct that you need to be doing more. And by you I mean your doctor needs to be more aggressive.
Giving pain medications is just masking how sick you really are. In fact, the codiene and bentyl can be dangerous when flaring becuse not only do they mask symptoms and prevent advancement of care; they slow down bowels and can trap in toxins and stool increasing your risk of toxic megacolon.
Tell your GI that you need an ibd specialist. Being in Toronto should give you access to good care. I am not exactly sure how your health system works and how you can get to a new doc but try your hardest.
Using hot packs really helps with the spasms n pain.
I would say that with what you are experiencing you should be on biologicals. If insurance won't pay, get into a clinical study.
Toronto is not too far from Cleveland clinic where they have tons of clinical trials as well as Ann Arbor Michigan (dr Peter Higgins is excellent) where they would probably admit you Into a trial.
It might be worth it to drive 4-5 hours and get a clinical trial (which won't cost anything)
Also make sure to get tested for cdiff, cmv, ova ans parasites...

Good luck!
Posted 5/16/2016 11:07 AM (GMT 0)
@Emma
I've been to Toronto General ER twice, we'll 3 times ( one was reassessement )in the last week once by ambulance ill make a long story short. There were a few oversites to my initial ER visit, the ER Dr called me to return just to be reassessed . I LUCKED out got an amazing ER Dr who has refered me to WCH (Woman's college hospital ) the first appointment was amazing. So I'm giving you that as a suggestion, it's called complex critical care unit in WCH. Obviously you will need a referral but they are not busy I got in , the next day now that never happens according to the ER doc but still he said it takes a week not too bad.
Which ER were you in. I'm so disappointed with Toronto General (and I HAD them in high regards) with the exception of my non ER reassessment with the Dr that got me the Gastrointestinal Dr at WCH .
I've been up since 5 am will try to go back to sleep now.
Posted 5/16/2016 12:44 PM (GMT 0)
@Old Hat:
I think your advice is very wise and I"m trying to get transferred to an IBD dedicated GI program now. I have been in contact with them and they said one of their doctors passed away and there's a backlog of referrals.

I'm glad that sacral plexus concept helped explain some things for you.

@Dikid: You are so right about the Bentyl just covering up symptoms.

I try to not use too much in the way of narcotics, Imodium or this pill, as I feel the same way. Constipiation is a risk for creating Toxic Megacolon and I don't want to go there. My current GI doc warned me about getting constipated and said that if I must take Imodium, then take only 1/2 a pill at a time.


@Sunnbuzz:
My family doctor is at a St. Mike's Family Health Team practice. The GI doctor he sent me to at St. Mike's denied that I have UC. His opinion seemed to be that if there is not regular blood, it's not IBD.

I live near North York General so that is where I went with my flare and they did the Colonoscopy on an outpatient basis and my care was sent to the GI doctor who did my scope. He is near my house so that is handy.

My goal is to have my UC care transferred to Toronto's Mount Sinai Hospital. They have an IBD program and it is supposed to be one of the best IBD program in Ontario, apparently.

re: tenesmus
I don't have that condition now. I did have it in 2012 when I had to wait two and a half weeks for colonoscopy at an private clinic. I have since found out that NYGH can do it in 2-3 business days, which was much better.
Posted 5/16/2016 3:59 PM (GMT 0)
My good friend is a Dr she cringes at the name St Mikes and has very little confidence in the them for plethora of reasons.
I've heard good things about MS , it's just woman's college hospital has a lot of options or so it seemed.
Good luck
Posted 5/16/2016 6:01 PM (GMT 0)
One of the St. Mike's GI docs (Kandel) told me that 'you don't have UC, it's just Proctitis'. Now I have Pan-colitis. Could have lost my colon the new GI doc says. Considering a CPSO complaint once this crisis gets more stabilized.
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