Hi all.
I am continuing to have pain inside after each motion.
The symptoms are:
Pressure, making me feel like I need to push out more. Walking around makes it feel like my insides want to drop out.
Pain in the lower pouch
Nausea and feeling weak afterwards
A little itchiness

Had my scope the other day and the surgeon says everything was mechanically good, but there was a small amount of inflammation. So he has put me on flagyl for a week. There has been minimal improvement over the first 3 days of the treatment.

Has anyone else had similar symptoms and found a reason, or is this just part of the recovery process. I'm 9 weeks post 1 stage surgery. Am I being too impatient? It is worrying me as this started about week 3, and it's got progressively worse. Not very comfortable and quite debilitating. Any feedback would be most appreciated. And I forgot to say Merry Christmas everyone.

Yes, Gary, believe it or not, nine weeks out is still early. I started out pretty well after takedown and then around week three my symptoms started. When you say pain in the lower pouch, do you mean internally but very close to your anus? I had these same symptoms. It was as if I couldn't handle any gas or waste in that area because it was so irritated that it wanted to push everything out, no matter how small. I also would void and then feel like I had to go again, like things were inflamed and swollen. This went on for quite some time. Antibiotics definitely helped. I also use suppositories to help calm that area down and Lomotil to slow things down so I don't go as much. This made sense since voiding a lot made that area irritated and the more irritated it got, the more I went. Isn't it interesting how a scope can show "minor irritation" but we feel like it's severe?? I would say stay on your antibiotics but maybe mention something to your doc about using a med to slow down the number of times you go and possibly use a suppository. Sorry I'm not much help; I can just share with you that I did experience everything you mentioned and it will get better with time. You may still have the ups and downs - I still do - but you'll get more attuned to what works for you. My one year anniversary since takedown was Dec. 17. Good luck and Merry Christmas to you!

Thanks lambiepie. What you are describing is very much like the way I'm feeling. The pain is as you say internally just inside the anus. I am on Imodium already. What suppositories did you use? How long did this last? What ups and downs do you still have? Sorry to ask so many questions but as you probably experienced yourself, your constantly looking for the answers to get back to some form of normality. Thanks again. Gary

I had symptoms similar to you. Like I said last time, it's best just to read some of my old posts to understand how similar. Keep in mind, the cause of each of our situations may be completely different.

Why don't you want to use opiate based medication? Codeine Phosphate/MS Contin saved me through my lovely Jpouch hell ordeal....

I couldn't use suppositories while the Jpouch was in full gear, as they wouldn't have stayed up there long enough to have helped. I'm using them now though, and they go by the name of Predsol(Prednisone in suppository form). I only use one every second day, because they are steroid based(and still get absorbed into your body) and I'm going to be on them quite a while until I get the Jpouch out/Anus removed etc, so I don't want to end up with Steroid related issues. Not enough research has been done to prove one way or another on long term use, so i'm playing it safe. The 5ASA supps made me bleed more lol. As did the 5ASA oral meds. In fact they sped my condition up so fast I got faced with having my bowel out faster than I would have if I'd never touched them.

It might be staring me right in the face, but I couldn't see where you'd listed what part of your colon/rectum had been taken over by UC. For me it started right at the very bottom of my rectum and travelled up, so essentially, 3 surgeries later, I still have UC(cuffitis is such a nice word, but why not just call it UC as it hasn't actually changed lol).....Will be great to get rid of that last diseased part of my rectum, and finally be UC free. Unmanagable UC prior to Jpouch surgery doesn't magically become managable UC after surgery...For many this will never be an issue, as the UC starts higher than the rectal cuff, and UC isn't known to travel backwards towards the anus, so Jpouch surgery will theoretically be a great option for them, if everything else goes to plan. But for others like me, I don't see why it's recommended at all. /shrug

I hope you get better, or whatever you are about to undertake helps you out sooner rather than later.

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This message has been edited. Last edited by: Adroen,

Well it's been a couple of weeks since I posted and not a lot has changed with my symptoms. I have undergone a number of tests; pouchoscopy, endoscopy, ct scan, MRI, and blood tests. I have been informed that I have tenesmus and that they can treat it using biofeedback. This is where they train the brain to read these pain signals differently. I am somewhat sceptical but at present have no other path being offered. I am 12 weeks post 1 stage jpouch surgery, maybe I just need more time to heal. Symptoms are still pain spasms as pouch fills up, pain during and after defecation, and the feeling of my insides wanting to come out. Looking for more feedback from anyone who might have experienced these symptoms early on. Has anyone participated in biofeedback. Pain relief recommendations (non opiate based)?

Hi everyone. Just wanted to see if anyone has some feedback on this last post. I'm looking for some advice on where I am currently at. Thanks.

Gary,

What you are experiencing seems like "butt burn". It also appears that pouchitis has been rules out.

I see you are taking Flagyl, but my doc prescribes flagyl and Cipro at the same time. Perhaps this combination of antibiotic will work better for you.

What you probably need to do in addition is reduce spasms of the sphincter, which might help in your case.

Have you tried a barrier cream like Calmoseptine? This might help more than you realize.

I also recommend that you get a prescription from you Doc for a Nefedepine based solution (nefedepine mixed with petrolium jelly). This solution had amazing results and stops spasms of the sphincter which cause that feeling of pressure and having to go to the washroom.

Feel free to drop me a t note if you have any questions.

Good luck!

Solomin

Thanks Adroen and Solomon
Just wanted to clarify a few things on your responses. I am not on any antibiotics at the moment, just gastrostop, benefibre, and degas. Was on pentasa supps but they seemed to be more trouble than good. I had proctitus which had extended up higher into the colon. I don't handle opiate based meds well. They give me bad Nausea and then I Have trouble eating. Already lost 17kg. I need to at least hold this weight. I don't think it's butt burn. I don't get sore on the outside just inside the anal canal. I use a barrier cream called sudocream. I'll talk to my GP about anti-spasmodics. Thanks for the feedback.

Hey Gary,

Yeah, Pentasa is one of the 5ASA meds that had the opposite effect on me to what was intended. So that doesn't surprise me that you didn't go well with them.

Proctitis(or Ulcerative Proctitis) is just the start of Ulcerative Colitis, if it starts that low down. They are the same disease, it's just UC refers to the disease as a whole instead of in sections. Mine was first diagnosed as Ulcerative Proctitis too(by the GI), before they worked out it had spread further along, and changed the terminology.

Sorry to hear Opiates don't go well for you. I couldn't use NSAIDS, as they flared my Reactive Gastritis(found that out before I even had my bowel out). I hope someone has some more ideas for pain relief then. Panadol(paracetamol) wasn't strong enough to help the pain I was having.

I was also using Pysillium Husk while I had the Jpouch operational, and still do now with the temp end ileo 3 times a day. I mix a teaspoon with a large glass of water. I don't mind the flavour(or lack of flavour, it's really bland). It helps thicken and in turn slow stuff down. Couldn't use Metamucil as it was flaring my Reactive Gastritis pretty bad, so had to switch to the natural stuff.

Xylocaine(lidocaine based) ointment for numbing the area before I used to try to get sleep was good. It hurts pretty bad when it's first applied though, but did help.

In my opinion, you haven't got plain old butt burn from what you've described. There wouldn't be many people still with Jpouches if butt burn included this kind of severity, and that many symptoms.

Like I say, I hope whatever they try with you works, and I also hope someone else has some info on pain relief for you, that's not opiate based. Which opiate specifically gave you a bad time when you used it by the way. I'm just wondering if it was opiates in general that didn't agree with you, or just a particular ingredient within one of the opiate based medications you took that actually caused the problems for you? I know some people can tolerate some opiates, and not others for example.

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Adroen. I've tried morphine, OxyContin (5% morphine, and digesic, plus another one which was a 12 hour release patch (forgot the name). They all have opiates in them, and gave me nausea thereby stopping me from wanting to eat. Anyway I'll keep looking for an answer to this pain. Pelvic floor assessment on Wednesday and biofeedback in a couple of weeks. I did some research on anal stenosis as well which seems to indicate similar symptoms, but I have been inspected a number of times over the last 3 weeks and none of the docs have diagnosed it. So bottom line is I'm still at a loss. I also think that maybe I'm just a slow healer and this is just going to take more time.