Stubborn cramping/tenesmus

All of my pain and cramping is in my sigmoid right now. It's so swollen that stool is having a hard time passing. I'm allergic to rectal meds, otherwise that's what I would be doing.

I usually sit on the toilet for a long time, in pain, until the stool gradually works its way "around the corner" and finally the rectum can expel it. The problem is that the sigmoid gets so irritated by this delayed passage, that when the stool finally hits the rectum, the rectum rapidly prolapses in desperation to force it out. It's explosive and I can't stop it.

Then once the explosive prolapse happens, it turns to tenesmus and I can't stop the muscle tissue from pushing, and pushing, and forcing, and cramping and trying to force out the tiniest bit of who knows what. The forcing, the muscle gripping, the pushing out of my rectal tissue... it's so incredibly painful to my pelvic floor, but I can't control it.

What is the best oral drug available for cramping? I'm also open to alternative remedies, since my rectal options are non-existent.

If I could stop the cramping, the tenesmus might ease up. My CRP is going down and I am starting to absorb more food, but this vicious cycle of sigmoid narrowing and rectal tenesmus has me at an impasse.

Thank you!

I'm not here to be told to go talk to my doctor. I would like real suggestions, thank you.

iPoop said...
Does rectal meds exclude mesalamine and steroids enemas? As those are the standard gotos. Tacrolimus/cyclosporine suppositories are expiremental and used by some with success.

Mesalamine is good oral as well as would an oral steroid.

An antispasmatic like bentyl could maybe help with the cramping.

If you are against all pharma stuff then I am not as helpful. Tumeric, LDN, FMT, and various diets like SCD/IBD-AID are standard gotos.

Unfortunately I am violently allergic to mesalamine. Last time I tried it rectally, my rectum swelled shut. I think the rectal steroid itself I'm not allergic to, but the chemical solution it's delivered in burns like hell and then my flare worsens. I have had such bad luck with rectal meds. One thing I'm thinking of is maybe making plain beeswax / oil suppositories that I stick up there in advance of a BM, so at least the strictured area has some help pushing stuff through.

iPoop, have you ever had temporary narrowing like this due to a flare? How did you cope with stuff trying to get through? Also I'm wondering how people deal with tenesmus in general... I've never figured it out. I just have to suffer through until the flare calms down.

I've never heard of bentyl. I'll ask my doctor about it.

Sara14 said...
I'm sure that was a "real" suggestion. It was also very empathetic. What a mean response.

If you have nothing to contribute to this thread, then please keep your comments to yourself. Thank you. I am in a lot of pain and have very limited energy/patience to accommodate people's emotional needs. I need real, practical suggestions. I can't run to my doctor every time something happens. It takes weeks to get an appointment.

quincy said...
The tenesmus is rectal inflammation when flaring. Dicyclomine in 20mg 4x daily can help, but not with the inflammation.

Are you able to use any type of suppositories?
You could ask your doc to see if nitroglycerin (which some have used for hemmies) might be an option.

Hope this is a real enough suggestion for you.
q

Those are actually great suggestions that I've never heard of before, and I'm going to ask my doctor about getting an RX for them to try. How do you figure nitroglycerine would help? By opening the blood vessels a bit more?

If I could just stop the cramping, I could get control of my life a bit more again. As it stands I can't even sit in a chair for 30 seconds without my sigmoid clenching like it's in a vice. It makes me so angry.

Surgery.

Bull101 said...
Surgery.

Yeah, I'm really going to go get a colectomy because I have bad rectal cramping.

Worst advice so far. Or are you actually joking?

My GI always prescribed me Algifen NEO for cramps and pain. It helps. In my country any physician can prescribe it. This drug is only for temporal usage (several weeks). No long term using!!! It can damage your kidneys.

Do you have any official options beside Prednisone? If I were you I would start immediately Biologics, Immunosuppressants and so on. If you do not have any of these options for whatever reason then I would try Indigo Naturalis. There is quite good body of evidence that this herb is effective. But there are doubts about safety. Be cautious.

https://link.springer.com/article/10.1007%2Fs00535-019-01591-9

MarkWithIBD said...

Bull101 said...
Surgery.

Yeah, I'm really going to go get a colectomy because I have bad rectal cramping.

Worst advice so far. Or are you actually joking?

You're in pain, you're complaining, you say you have 0 quality of life, allergic to lower level medicine and I've seen you talk about not wanting to go to higher level medicines such as remicade, entyvio, etc. So no, I'm not joking.....it's a very viable option in that sort of position. Oh also you need a prescription for all the recommendations you're asking about and you won't call your doctor (who's the only one that can write you a prescription)......quite the pickle....

quincy said...
There's always quality of life vs acceptance and tolerance. Personally, in your situation, surgery would have been my option.

As the years go by I'm considering surgery more and more, but some things need to be ruled out first. My flares always follow the same pattern... 3-4 months of flare, 3-4 months of recovery, 6-12 months of medication-free remission and living life. The cycle repeats over and over and no MD has ever been able to tell me why. No medication, not even biologics, change this cycle.

The only model that fits is the infectious model. I am CMV+ and probably HSV 1 or 2 positive in my rectum. A cyclical virus would explain the timing and severity of my flares.

Infectious colitis should only be treated with colectomy if things like toxic megacolon or sepsis happen. The reason is that the infection could move to other organs once its preferred bowel tissue is no longer available. This is the #1 reason why I won't do a colectomy. Instead, I am next going to try antivirals like vancyclovir to see if they impact my flare at all. If they have major impact, then I know I have viral colitis and all I have to do to avoid flaring is to maintain a lifestyle that keeps infections suppressed.

quincy said...
I have tenesmus with all my flares...I call them white-knucklers.

Tenesmus is hell. What bothers me the most about it is that I can't control it. I know the BM is done but my bowel just keeps clenching uselessly. It really makes me hate my own body sometimes. Like why are our bodies so stupid that the bowel would rather prolapse than just stop having a BM. Tenesmus is the only thing that literally makes me scream.

quincy said...
You do understand how UC works and where it would be at its worst?...because the rectum is its chosen place of hell. There are a few who have had surgery because of severe rectal inflammation, and it's not a joke or insult given as a suggestion.

Yes I know. There's a young man in my support group who got a colectomy and J pouch all because of 2 inches of inflamed rectum that would never go away after 5 years of treatment. He started with left sided UC that covered his whole descending colon. Years of meds got him 95% better except that last little piece, and one day he said enough is enough and got it taken out. I can't imagine what it must be like to be pecked to death by such a tiny piece of inflamed tissue.

It really sucks that they can't just cut out the inflamed piece and leave the rest. If they offered to take out my sigmoid tomorrow and leave the rest, I would do it in a heart beat. I understand why the don't, but... I have "indeterminate colitis" because mine is patchy, or at least I did until the recent pancolitis dx. I hate my sigmoid colon, hate it hate it. All my pain is right where the bowel makes its little turn into the rectum. If I could tear out just that piece, I'd do it.

quincy said...
I did more searching on nitroglycerin supps, seems ointment is more the norm.....although if you dont have inflammation @ visual and cant use steroid, they could be compounded.

I made the suggestion based on the fact you cannot use the steroid or mesalamine...but I may have misunderstood.
q

Yes, I can't use the other rectal meds... but maybe a compounded nitroglycerine in a very hypoallergenic base could work. Thank you for this suggestion!

Pain In The Ass said...
Uceris Foam... My symptoms are similar to yours. Mesalamine enema / suppositories wouldn't do anything. Hydrocortizone enema was useless and stung to high hell. The Uceris foam is slightly painful for the 1st few applications but 2-3 days it brought relief after months of suffering, Unfortunately I'm dependent on them.

- they have a coupon on their website that reduced my copay from $150 to $25

The foam made me bleed like crazy after the second application. I really don't know what happened. My bleeding went from a 2/10 to maybe 8/10. I have brought this up with my GI team and they just chalk it up to me being sensitive or allergic, but I don't know. Even if I use something simple like a saline enema, my flares get worse. I sometimes wonder if my nervous system down there is just hyper sensitive and any penetration will trigger big reactions? Such a mystery.

You're saying though that after a few days the uceris started working. Maybe I didn't try it long enough... but the bleeding just got so intense I was afraid to continue.

What do you mean you're dependent on them? If you stop does your UC come right back?

Hugo18 said...
Am i missing something? Why are you not considering biologics? Infliximab, humira, simponi, entyvio or xeljanz?
If you have that kind of disruption in your life why not move up the ladder?

I failed all those. Last one was entyvio and it stopped working after 14 months.

Pain In The Ass said...
Yes it took me few days to see results and I was impressed! Unfortunately, after I drop dose to 1x daily symptoms slowly creep back, not terrible but it is noticeable. I've had 3-4 6 week kits so far this year and its time to look into biologics as uceris foam is not meant for long term. 40 mg prednisone didn't help me, I tried hydrocortizone 2x daily for 30 days burning after application and I believe it made me worse tenesmus and pain I couldn't sit in a chair.

Sounds very similar to my situation. My tenesmus is triggered by sitting. I have a hemorrhoid pillow that I can sit on, but it only sort of helps. My butt cheeks have totally atrophied so when I sit, I'm sitting right on my sitting bones. Then my rectum gets compressed, and the tenesmus pain starts. Usually within 30 seconds. Then the only way it ends is by sitting on the toilet and letting my rectum prolapse, squeezing out practically nothing, until the impulse passes.

I hate my body.

My condition is not life threatening right now, I'm just suffering a lot. I wish there was a way to stop the cramping, just to shut it up temporarily. I take morphine which helps with the pain but it doesn't work for the mechanism that stops the cramping. I just want all peristalysis to stop for a while so I can rest. Maybe a high dose of immodium?

Why not just pred then?

How bad is your BMI if you got no more fat in your butt and only sit on bone.

Given the amount of pain, low body weight and stubbornness of your illness hospital-inpatient isn't an unreasonable suggestion. You said it takes a long time to get ahold of your GI. That would expedite seeing a GI. Just worried about you!

We had one posters year or so back like this, he was going to figure out his UC cause and against surgery, very underweight. Finally underwent an emergency surgery had a heart attack under anesthesia and died. Kicking the can too far down the road and denying the inevitablity of it all got him. Just don't want you being the same...