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Tenesmus is ruining my life. literally. please help!

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Irritable Bowel Syndrome
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Posted 7/1/2018 2:16 PM (GMT 0)
Hi Everyone,
Although i was NOT diagnosed with IBS this is the only forum I thought would be to ask in it as IBS is as vague as tenesmus.
about 13 years ago i had a horrible food poisoning, after it went a way (3 days) i got stuck with the feeling that i "have to go".. had colonoscopy and blood taken, nothing out of the ordinary. GI said it's IBS and put me on seroxat+xanax. which WORKED. made 90% of the symptom go away. however, 3 years ago (i'm 43 now) it started again, so we tried the same meds. no affect.
since then, I have been trying more than 30-40 different anti depressants/anxiety/neurological meds for it to go away, nothing is helping, tried hypnosis, acupuncture, even tried the naturopathic/homeopathic methods (which did nothing).
Been thru 4 different GI's, one of them suggested botox, but then he had second thoughts because my problem is not in my rectum but more of a puborectalis/pelvic floor muscle thing.
tried biofeedback, psychotherapy, and nothing helps. i just want something to take this thing away from me. i feel so helpless seeing my life passing by..
I had 3 relationships ruined because i'm never in the mood for anything. I will try ANYTHING at this point been xrayed, ct scanned and mri. nothing out of the ordinary.
maybe someone here will have anything that he/she tried and it worked?
oh, also tried (5 times) direct injections of steroids/lidocaine under anesthesia with no relief and a shot to my pundendal nerve, nothing helps! please help me get my life back sad smhair
Posted 7/5/2018 11:58 AM (GMT 0)
So sorry I can't be of help hopefully someone with more experience than I can be. All the best.
Posted 7/5/2018 12:27 PM (GMT 0)
hoping that as well sad
Posted 7/5/2018 3:38 PM (GMT 0)
Out of curiosity, has any of your drs ever tried you on an anti-spasmodic, such as Bentyl? I have crohns & 3 years later UC was added. When the tenemus kicks in, it is miserable. I always keep Bentyl on hand & it really helps me. I would think it would be worth trying, it certainly will not hurt you.

Take care.
Posted 7/5/2018 4:46 PM (GMT 0)
I tried Dicyclomine for a while, no effect on me. I'm a rare case of being miserable sad
Posted 7/13/2018 4:19 PM (GMT 0)
IBS is the pits. I don't remember it not being a problem for me. I also had/have anxiety as a child not that I'm saying you do. But stress is a big trigger of IBS episodes. Even if it's happy stress.

I agree with straydog. My prescription is Levin/SL. I also have gastritis and diverticulitis both of which are active a lot. This med even helps a lot for that. I take it with me whenever I leave the house but even that will trigger and IBS episode. It doesn't work like magic but it does help a lot.

I have to admit that since I've had IBS for so long I don't even know how they test for it. I was DX'd by the Dr. just telling him my SX and that was back in the mid 70's. I can also say that the best way to get through and episode is to learn deep breathing and learning to relax you muscles. It's hard but practice when you're not having a problem. I was so good at it that I was in labor with contractions 3 min apart before I realized it wasn't IBS. My little one was born about 1 hr later. So, yes they can be severe enough to freak one out. I had been practicing relaxation for years so it was hard to tell.

One question. At the start you said you weren't DX with IBS but then you said the GI diagnosed you. Am I reading that wrong? I apologize if I misread but I have some trouble tracking longer paragraphs. Not a problem for me but I did want to apologize if I'm totally off base.
Posted 7/13/2018 6:09 PM (GMT 0)
Hi Lendi,
Yes, 13 years ago the GI said everything is alright and that it is IBS, however I didn't have any other IBS sympotms. just tenesmus, since the meds helped, I just left it that way hoping for the best. but now, after 3 years of non-stop meds and hypnosis/meditation/yoga/pilatis/psychs I am feeling they are missing something...
Posted 7/13/2018 6:53 PM (GMT 0)
Eternity, if it's been 13 years since you have seen a gi dr & had any testing, please get a referral to one. I have both crohns & UC & know first hand what it can be like with tenemus. When were you last seen by a gi dr?
Posted 7/13/2018 7:23 PM (GMT 0)
13 years ago it helped, but re-surfaced 3 years ago, so i am seeing gi's until now, got tested again for everything in the last 3 years, just 6 months ago had a sigmoidoscopy, 1 month ago blood & stool tests..
I even had a very detailed tests done in germany&the us, but the local GI's don't pay attention to these tests... although they show high histamine in stool and no fat + other different things.. maybe i'll upload the test results here? maybe someone here will know more about it?
Posted 9/13/2020 2:43 PM (GMT 0)
Hi Eternity,
I have suffered from the same symptoms as you for more than seven years. I hope you are feeling much better now, but if you ever found a solution to this terrible problem, I would be grateful to hear from you!
Posted 9/13/2020 6:26 PM (GMT 0)
@emilsen .. please contact me at [email protected]... I have not found a solution yet but maybe together we can do it...
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