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Cant go back to the pain again J pouch

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Posted 1/21/2019 9:09 PM (GMT 0)
Ok well I am truly disappointed and just sad that the antibiotics didn't work. I was on them for a full 14 days got off Friday and today I am in pain again back to soaking my back door, back to the creams and heating pad and pressure down there.
My gastro said when he did my pouch scope I had 5 cm of inflammation and the pouch was ok other then ulceration near the staples. He said when I get off Friday and if it comes back go back on both flagy and cipro for another few days twice a day then drop down to once a day. Well here is the problem the cirpo was giving me heart palpitations and hot flashes I thought the hot flashes were the beginning of my menopause but found out this week its a reaction to the cipro and I am now scared because I am still getting the heart palpitations where I never had that before and two days last week I felt so dizzy but I didn't care my pain was gone. But with finding out now those are side effects of the cipro I am not playing around with heart issues.
Tried to get hold of my gastro today which I am learning is a difficult process but off to see my family doctor in an hour for another issue.

Has anyone had any issues with cipro and if so what was prescribed instead?

It was so nice to live pain free for 2 weeks I truly felt normal again, now all I am feeling is pain sad
any help would be so appreciated I cant go back to the way I was 2 weeks ago.
Posted 1/21/2019 9:25 PM (GMT 0)
I’m not sure antibiotics work on cuffitis. Most of the time they use rectals like suppositories, foams or enemas.

When I would start a new antibiotic combination it would put me on the floor for a day or two and then my body would adjust.

There are other antibiotics that you can try but I’d try the rectal stuff first and maybe a different antibiotic like Augmentin.

Also, remember that messing with antibiotics can cause c.diff. At some point you might want to get tested for it when you go off of the antibiotics.

I’m doing really well on a biological for my pouchitis but cuffitis is even easier to treat so let’s hope that you can knock it out with some rectals. Dealing with all of this stuff takes time and a lot of patience.
Posted 1/21/2019 9:30 PM (GMT 0)
I didn’t have an heart issues with Cipro but I hated it. I always worried about my tendons when I was on it. I’d only go on it when things were really acting up.

Most of the time I stayed on augmentin and added another when I needed it.

Xifaxan is another antibiotic used and it is no systemic so much fewer side effects. It didn’t work that well for me and it costs $$$.
Posted 1/22/2019 12:48 AM (GMT 0)
Valli you will get to that day when everything gets figured out,I know a little about that. I remember your post a few days before your surgery when u were going to tell Surgeon u wanted to try Humira(was it Humira?). Then Dr telling u you will be dead before Humira starts working(I think that's how it went??). Hey put one foot in front of the other every day and u will get to full recovery. Your a fighter. Class of 2017-18 doesn't give up. Let's get that back Door all fixed and you'll be fine for that next vacation

Post Edited (3timechamp) : 1/21/2019 7:21:03 PM (GMT-7)

Posted 1/22/2019 1:26 AM (GMT 0)
I am so sorry. I wonder if the results were minimized due to the time you were on antibiotics before the scope? It would be good to know the actual extent involved. As Keith mentioned, you may do well with enemas or suppositories, or even a biologic if the involvement is beyond the cuff (when untreated). I worried a lot about pouchitis, especially because I generally don't handle drugs well. I get horrible side effects from antibiotics... I've heard Augmentin is a good option, probably heard it from Keith! I really wish you would get better and stay better.
Posted 1/22/2019 3:28 AM (GMT 0)

ks1905 said...
I’m not sure antibiotics work on cuffitis. Most of the time they use rectals like suppositories, foams or enemas.

When I would start a new antibiotic combination it would put me on the floor for a day or two and then my body would adjust.

There are other antibiotics that you can try but I’d try the rectal stuff first and maybe a different antibiotic like Augmentin.

Also, remember that messing with antibiotics can cause c.diff. At some point you might want to get tested for it when you go off of the antibiotics.

I’m doing really well on a biological for my pouchitis but cuffitis is even easier to treat so let’s hope that you can knock it out with some rectals. Dealing with all of this stuff takes time and a lot of patience.


KS1905 OMG I feel like such an idiot he prescribed Salofalk suppositories nightly after my scope.
I totally forgot all about them the reason was the two antibiotics were already working by the time I had my scope 5 days later. My boyfriend that evening filled the prescription along with addition antibiotics if I needed and I forgot all about the suppositories in the bag. I was feeling fantastic so I never gave it any thought till the pain started back yesterday and today it was completely back to before starting the 2 meds. And of course after reading your advise to take enemas or suppositories I ran over to the bag I received that night and there they were... Ok lets blame it on the cold cold weather - 25 will do that to anyone.
Seriously thank you all for reading my post and helping me get through this mess.
Off I go now to try one not looking forward to it since my back door has been used way too often today ( yes that sounds bad lol ) but I know you all understand what I am taking about BM
Posted 1/22/2019 3:35 AM (GMT 0)

3timechamp said...
Valli you will get to that day when everything gets figured out,I know a little about that. I remember your post a few days before your surgery when u were going to tell Surgeon u wanted to try Humira(was it Humira?). Then Dr telling u you will be dead before Humira starts working(I think that's how it went??). Hey put one foot in front of the other every day and u will get to full recovery. Your a fighter. Class of 2017-18 doesn't give up. Let's get that back Door all fixed and you'll be fine for that next vacation

Yes, it was the Humira they tried in the hospital it didn't work so they gave me no choice but to have the surgery asap without really giving it a fighting chance. They all knew by that time my colon was 100 percent ulcerated it was I who fought the whole thing in the hospital.
I agree we are a pretty strong group and I will not give up not after feeling fantastic last week. Will try the suppositories tonight and see how it works out. Fingers crossed.
Posted 1/22/2019 3:40 AM (GMT 0)

notsosicklygirl said...
I am so sorry. I wonder if the results were minimized due to the time you were on antibiotics before the scope? It would be good to know the actual extent involved. As Keith mentioned, you may do well with enemas or suppositories, or even a biologic if the involvement is beyond the cuff (when untreated). I worried a lot about pouchitis, especially because I generally don't handle drugs well. I get horrible side effects from antibiotics... I've heard Augmentin is a good option, probably heard it from Keith! I really wish you would get better and stay better.

S

Thanks NSSG as I mentioned in the above post my fault will start the suppositories tonight. Fingers crossed.

Yet the antibiotics had to work right since I was feeling 100% since taking them. Lets see what the suppositories do tonight.
Posted 1/22/2019 4:38 AM (GMT 0)
I'm keeping my fingers crossed that the suppositories with for you. It truly sucks to go thru all these surgeries and still be in pain. Good luck.
Posted 1/22/2019 4:46 PM (GMT 0)
Valli,

I doubt that you will get instant relief, you are going to have to give it some time. If you need some additional relief then I would ask for some steroid foam for the mornings.

Just remember that the rectal stuff is easier to treat than pouchitis.
Posted 1/23/2019 2:35 AM (GMT 0)
Yes I am thankful it is not pouchitis I know it is more difficult to get rid of compared to cuffitits . Hopefully a few days on the suppositories will help I have an appointment with my gastro next Tuesday will ask for cortiform I have used that in the past for my UC.
Posted 1/23/2019 4:46 AM (GMT 0)
The problem is that you were already treating when you had the scope so it's tough to know the extent. I think the rectals are a great option though, and yes, using rectals regularly isn't a huge inconvenience. Not to us considering we are used to much more aggressive treatments. If that were the cure, i'd be okay with it personally. I guess whatever works is good. I know how i was living with UC wasn't working for me. I could only move forward. Hopefully things get much easier from here. Let us know how you're doing with supps in a couple days, maybe it's as simple as using those...
Posted 1/25/2019 3:09 AM (GMT 0)
Hi NSSG thanks for the well wishes, yes I agree we dont know the exact amount that was flared before the antibiotics. Update I feel like I did 2 weeks ago before the meds. Only been on the suppositories for 4 nights now and no relief I am getting worst everyday today all the gas pain came back and I have had 10 BM so far and its not even the middle of night that is when I visit the toilet way too often.

Thinking I may start back up with the antibiotics even know they are giving me heart palpitations.
Posted 1/25/2019 3:19 AM (GMT 0)
Why weren’t you taking the antibiotics at the same time? I always try to over treat my pouchitis then under treat it. You weren’t feeling well before you started the suppositories.

If things aren’t improving then I’d ask for steroid foam or entocort and augmentin.
Posted 1/25/2019 1:58 PM (GMT 0)
Keith I was taking both the flagy and cipro at the same time for the whole 2 weeks, it wasn't till the last few days I noticed I was getting heart palpitations and I am still experiencing them now but I finished the 14 treatment.
If you experienced the heart palpitations would you still stay on them.
ps still doing my suppositories nightly.
Posted 1/25/2019 2:22 PM (GMT 0)
Yes I would have continued but I would have called my GI at the same time and asked what to do. Maybe there is a different med that he would have given me or that he’s seen this before and what to do.

I wouldn’t have stopped without medical advice. I did it once before and ended up in the hospital for a few weeks.

When I am sick then I’m always communicating with my GI.

Right now you need medication.
Posted 1/25/2019 3:17 PM (GMT 0)
Oh Vali, I'm sorry to hear you are still feeling crappy. I hope the docs can give you a different antibiotic that doesn't have those side effects. Maybe if you do both the suppository and antibiotic together it will finally get you some relief.
Posted 1/25/2019 8:53 PM (GMT 0)
Woogy I was suppose to do both at the same time after my scope he prescribed the suppositories I was already on the antibiotics for at least 6 days by then .
Keith h e told me to finish the 14 days and stop and if a few days later it came back then go back on twice a day for 4 days then once a day till he sees me again. So I had to stop at the end of the 14 days
By then I realized I was getting the heart palpitations that’s why I didn’t go back on 4 days later .
Still doing my nightly supportories hoping it might help. When I see him on Tuesday he can hopeful prescribe another antibiotic other then cipro
Posted 1/25/2019 11:42 PM (GMT 0)
Oh Valli a bump(pothole??) in the road. Hope Dr and all the great people here can get u on right path. Always thinking about you and Song. We all had surgeries close together. Let us know how u make out. Prayers for a positive outcome
Posted 1/26/2019 9:18 AM (GMT 0)
The only thing I have to add is that if cipro gives you heart palps then you may be one of the % of people who gets the black box side effects of cipro. I think it's called tendinopathy. The valves the heart have tiny tendons that open and close them. You don't want to mess with that.
Posted 1/26/2019 9:39 AM (GMT 0)

3timechamp said...
Oh Valli a bump(pothole??) in the road. Hope Dr and all the great people here can get u on right path. Always thinking about you and Song. We all had surgeries close together. Let us know how u make out. Prayers for a positive outcome

You guys always try to get me on the right path , that’s what I love about this forum “ we understand each other “ 3TC when is your surgery isn’t it coming up this week?
Posted 1/26/2019 9:51 AM (GMT 0)

MarkWithIBD said...
The only thing I have to add is that if cipro gives you heart palps then you may be one of the % of people who gets the black box side effects of cipro. I think it's called tendinopathy. The valves the heart have tiny tendons that open and close them. You don't want to mess with that.



Yes markwithIBD that’s exactly what I was thinking . I don’t want to play around with my heart or lungs . Years ago during my stressful divorce I took up smoking two years later one November night I started wheezing that was my last smoke I stoped the very next day “ cold turkey “
I won’t mess with that neither will I mess with my heart ( life , boyfriend and kids do a pretty good job of that ) lol . So I will wait till Tuesday to see what the doctor recommends

On a real positive note it’s 5 am and it wasn’t my back door ( my butt ) that got me up my suppository has been in since 12:30 and I have had no urge to use the bathroom . Maybe just maybe it’s starting to work.
Posted 1/26/2019 3:43 PM (GMT 0)
Valli Colorectal surgeon wants plastic surgeon to be there at Hernia surgery. So coordinating a day where both are available isn't easy. So Dr gave me choice of Fdb 7 or March 7. I chose March 7 bc (hopeing)With wife buying me out I will have $ by then. I don't get paid if I don't work so having buyout $ will give me peace of mind to take more then 2 weeks Dr recommends I'm sticking with March 7. If I don't get buyout $ by then ,then don't know how my bills will be paid. Don't want hernia to get any bigger. Not easy
Posted 1/26/2019 7:56 PM (GMT 0)
3TC your bills will always be there your health won’t . Don’t wait too long. I am a single mother of 4 and when I am off I don’t get paid either so I understand. I hope you get the buy out soon so you can move on with your life . Do you have insurance?
Posted 1/26/2019 8:15 PM (GMT 0)
Yes. 2 things we were waiting on. Wife will keep me on her health insurance til I'm 65 then I can get Medicaid/Medicare so that's great since her insurance thru her job includes Dental (Out of $257,000 for 3 surgeries i Have deductible of $4,000) So lawyer and I negotiated that which is a valuable win for me. Wife got the OK from Unitrd Health care Oxford to keep me on plan if we just separate for now. We are now waiting on Fidelity to ok 50% of her 401k going to my name under an agreement of separation. I'll also get % of her Social Security,that's automatic
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