Jpouch doing well...but other (OT) issues, sigh

4 surgeries - one for my hip. I had to go off a biological prior to my colectomy and my hip surgery to reduce the risks of infections.

Bull101 said that his was an outpatient and he traveled pretty soon after it

valli1234 said...
Wow 4 nope I am done at 3 lol well I can only hope
And your talking about the scraping is an out patient right?

yes, his scraping of the rectal cuff was an outpatient procedure

notsosicklygirl said...
It wouldn't heal because it's inflamed. It's basically UC impacting the cuff.

Bull was pretty miserable when his cuff was inflamed. He's had a good result from the mucosectomy. I haven't seen him around lately, but if I remember correctly, he is living MUCH better. You should see how things go, and get rechecked, find out options, consults with some surgeons to discuss the cuff scraping if it's the best option. There's no reason to rush.

NSSG I don’t want to rush but I don’t want to stay on the antibiotics either for a long period still getting the heart palpitations from them . Then when I come off within 3-4 days tops I am back to the pressure , pain and 15 or more BM a day. Sort of feel I have no choice but to stay on these meds but I am not happy they are causing me these side effects.

Woogy said...
Hey Valli,

Is your doctor keeping you on the antibiotics for a month? I've also been on and off Cipro since January. When on it, I feel great and normal. But like you, after a few days of stopping, all the symptoms come back. The pressure, urgency, feeling like I can't empty my pouch fully, etc. It's the pits. I go see my GI next week and I'm going to tell him I need something that will be longer term. If it's a biologic, then so be it. I can't take going on and off these antibiotics. Plus, the first day I'm off of them, I have a major headache all day long that nothing I take helps. It's really frustrating.

Woogy my doctor has said a few things regarding the antibiotics in the last 3 months . First we tried it for two weeks then a few days after getting off all my symptoms returned the exact same as yours. I went back on a week or so later only to discover the heart palpitations were from the antibiotics so I stopped. I tried only the Flagyl by itself that didn’t work . All together I have been on them 4 times , this time I am doing it every other day and it seems to work I only get the heart palpitations on the day I take it . I swear I sound like such a complainer but I also noticed my gums hurt and tend to bleed when brushing when I am on the antibiotics which doesn’t make sense since it’s used also to treat gum disease. And I go get regular check ups at the dentist and no problems were seen.
Over all I hate being on these things . The steroids gave me no side effects but didn’t help with my inflammation at all . These guys work but give me side effects. Can’t really win here.
Let us know what your doctor has to say . Are you on anything now?
And have you had a scope since your take down in Nov ?

I wish you both the best of luck. I am with you woogy, a long term solution is needed, even if biologics. I just hope they work really well for you, that's all we can hope for. I think it will be better once you find something that can keep it under control. One infusion every month is a lot easier than antibiotics every day. I hate to say that, because I know we all hope to be med free after surgery, but it's not the case for everyone, unfortunately. If a biologic does the trick, that's great! Let us know what your doctor says!

Thanks. I was really hoping to be med free but yes I think I would rather take a biologic once a month than these antibiotics every day. I noticed this last script he gave me is now 500mg twice a day instead of 250mg. not sure why he increased it. I really hope he has a better solution for me.

Yeah I had some issues, not sure if it was the cuffitis or just things settling down. If I don't eat crazy calories a day I usually go 4-5 times now. I can hold it if I REALLY need to for 1-2 hours after getting the first urge, though it gets really really uncomfortable. For me I usually go roughly 12 hours after I eat, almost like clockwork, so I try to limit my meals to 3 a day. I'd say that's a pretty solid turn around for me. I'm living life, I work out roughly 5+ days a week, I go out regularly (some would probably even say too often....). Just got back from a 5 week travel trip of Denver, CO, Salt Lake City, UT (skiing both times), Nashville for a wedding, then Florida for finals including the celebration after. Well worth the follow up surgery....

In terms of surgery, correct it was outpatient. Maybe less than an hour, girlfriend took me home after. I had pretty high pain the following week including a freak out one night where blood wouldn't stop and I had to sit in a tub and call my surgeon because i couldn't control blood leaving my backside it just dripped. Either way I flew to Vegas a week after, and Germany 2 weeks after my surgery no issues.

Summary....highly recommended if you're having issues.

Woogy, did they do biopsies on the inflammation? What did they show? Did you try pepto? KS mentioned that as being helpful too. I believe his diagnosis was changed to Crohn's since he has chronic pouchitis. I wonder if that's what the pathology says, or if it's a diagnosis that was given out of necessity?

Woogy said...
Well saw my doc today. Since the antibiotics work, this is their course of action. They will keep me on 500mg twice a day, then down to 500mg once a day for two weeks, 250mg once a day for two weeks and then try to get off them. If while lowering the amount I get symptoms they will bump me back up. Ugh. They won't do biologics since they are not proven to work for pouchitis and the antibiotics do work. So I guess I stay on these until they stop working. So frustrating. I am going to do more research and see if there is something I can try to get off these and keep the pouchitis from coming back. I don't want to be on antibiotics forever. Though I might try Keith's suggestion and take them every other day instead.

Woogy,

Sorry if I wasn’t clear, I was recommending alternating every week, not skipping days. Switching/rotating 3 weeks and then skipping for week, this way you don’t build up a tolerance for one antibiotic and lessens the chance of yeast infections.

If they’re not going to give you a biological then I’d try using combo antibiotics and hitting it hard like with both Cipro and Augmentin twice a day at the same time.

After symptoms kept returning and I developed ulcers my GI was willing to write a script for biologicals. I also asked for a biological, I kept getting yeast infections from the antibiotics.

Where do you live? If you live in the NY/NJ/CT then I can put you in touch with my GI if you wanted a 2nd opinion.

Hi valli!
Gosh, I am sorry you are dealing with this. But the fact that you go off then antibiotics and it comes back - shouldn't that help to give the doc some idea as to how to help you? I am remembering when I was in hip pain, before my first hip replacement. The ortho referred me to a pain doc who did an injection into my hip joint (did you know the hip joint is reached from the front groin area, basically at the panty line?!) When that injection, which reduced inflammation and also gave the cushion of some medicine between the bones worked really well, the ortho was thrilled because he knew that the hip replacement would fix my pain.

Gosh, beta blockers to counteract the antibx. Meds to counteract meds. But I hope this combo helps you for a bit so you can go away and enjoy yourself. Where are you going? Maybe ask about this mucousectomy procedure when you get back?

My jpouch is for the most part doing well! about once a week I will have issues as a result of some meal, and sometimes it's something that surprises me. I made a dish with shrimp and linguine with some chopped spinach in a garlic-butter sauce the other night, and had tremendous gas and increased BMs. But Hubby had the same issues, so it wasn't just me. We rarely eat anything so rich anymore, so maybe the butter and the garlic....?

Also I've learned that I can have a "risky" meal like pizza, but I can't eat it two days in a row without issues(if we have some left over.)

The countdown is on till the lumpectomy, which is actually called a partial mastectomy. I've gotten my head around it, I think: this is not going to kill me, so In just need to take care of the issue. Or maybe that's denial. I don't know. I am eager to get this done and over with. Then my appointment with the radiation oncologist is 3 weeks later and we'll set the schedule for 4 weeks of radiation. These will be 30 minute sessions. Hopefully they can be in the morning and I can go on to work....? And as soon as possible so I can enjoy some of the summer....? I really don't want to be out on sick leave again! I am prepared to cut down my duties but I'd like to continue as much as possible.

These last few weeks have been very busy at my work, but it's very fulfilling, so I'm not complaining (much. ) . I am supposedly part-time, 30 hours a week, but one recent week I worked 46 hours! I figure I'll collect comp time as I go through my medical issues. And I plan to take a day or two off this coming week, post-Easter.

Happy Easter to you and to all! Champ, how are you coming along?

ks1905 said...

Woogy said...
Well saw my doc today. Since the antibiotics work, this is their course of action. They will keep me on 500mg twice a day, then down to 500mg once a day for two weeks, 250mg once a day for two weeks and then try to get off them. If while lowering the amount I get symptoms they will bump me back up. Ugh. They won't do biologics since they are not proven to work for pouchitis and the antibiotics do work. So I guess I stay on these until they stop working. So frustrating. I am going to do more research and see if there is something I can try to get off these and keep the pouchitis from coming back. I don't want to be on antibiotics forever. Though I might try Keith's suggestion and take them every other day instead.

Woogy,

Sorry if I wasn’t clear, I was recommending alternating every week, not skipping days. Switching/rotating 3 weeks and then skipping for week, this way you don’t build up a tolerance for one antibiotic and lessens the chance of yeast infections.

If they’re not going to give you a biological then I’d try using combo antibiotics and hitting it hard like with both Cipro and Augmentin twice a day at the same time.

After symptoms kept returning and I developed ulcers my GI was willing to write a script for biologicals. I also asked for a biological, I kept getting yeast infections from the antibiotics.

Where do you live? If you live in the NY/NJ/CT then I can put you in touch with my GI if you wanted a 2nd opinion.

Oh ok thanks Keith. that makes sense. I'll contact my doctor and tell him that. hopefully he will agree to doing 2 antibiotics together. unfortunately I'm no where near NY, I'm in the burbs of Chicago. I see an IBD GI doc at northwestern.

Hi guys 3TChamp I am doing well thank you 😊.Things have settled down this week it’s a complete different feeling compared to what I have been experiencing all these months. The best part is I am on no meds.
I don’t know what is going on so I am not over thinking it ( just happy ) I still have some urgencies and yesterday I had liquid diarrhea all day till early evening but that’s ok . The pain is gone and BM don’t hurt. My doctors assistant called me up yesterday and asked if I still want to do the fecal transplant I told him I would wait till after Egypt to see how I am doing and he was ok with that. I didn’t want to dismiss it just in case my symptoms reappear.
So right now life is good and I pray it doesn’t change .👼

How are you 3TC you said before you’re still experiencing bleeding once in awhile how is that now? And did you go back to work full time?
Song thinking of you I know your appointment is coming up next week. How are you doing?

Songlady, sending best wishes for your procedure next week. A friend of mine who had it done around your age was mainly tired on returning home-- so needed a lot of sleep. (She was also early-stage.) Definitely take care rather than push yourself beyond the absolutely necessary for at least a few days. / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal)