HealingWell
Search Close Search
☰

Last ditch effort before taking w/surgeon

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/25/2016 9:47 PM (GMT 0)
So my symptoms are finally getting better but not 100%. My doc put my on antibiotics and flagyl in addition to the cortofoam, Canada and Uceris. I'm a little concerned about the antibiotics because I've had c-diff before and it took about 5 months to finally get rid of it. I really don't wanna get it again!

He also said he wants to accelerate my Entyvio infusions, and also do a flexsigmoidocopy once I'm done with the antibiotics. If all that doesn't work, he's going to refer me to a colorectal surgeon. Since its proctitis and only in that area, he said the doc will most likely suggest a bag to let the rectum rest for a few months and then reattach. I guess it's really tough to take out the recrum- it's not as clean as taking out other parts of the colon. I'm really, really hoping that isn't going to happen.
Posted 7/25/2016 9:53 PM (GMT 0)
you said antiboitics and flagyl...which other antibiotic are you on besides the flagyl? I'm currently on Cipro and Flagyl for pouchitis. Flagyl is usually the first drug of choice to eliminate C-Diff as well.
Posted 7/25/2016 9:55 PM (GMT 0)
it never hurts to talk to a surgeon just to gather information so if that time does come you really need one you'll be one step ahead and would of had time to digest the info. Definitely get more than one opinion if you do
Posted 7/25/2016 10:30 PM (GMT 0)
Try LDN or FMT before surgery
Posted 7/25/2016 10:52 PM (GMT 0)

st_uc said...
Try LDN or FMT before surgery



yup ! yeah
Posted 7/25/2016 11:03 PM (GMT 0)
I think you should keep going with what you're doing if you've improved a lot. Are your symptoms unlivable? No reason to consider surgery if you're functioning and have a good QOL. I was completely nonfunctional and home-bound...

One thing i can tell you about surgery, is that in the case of UC, they NEVER leave the rectum. Why would they leave the part with the active inflammation? That doesn't make any sense and if someone recommended it, I would consult with someone else. Smart to get a few opinions before undergoing any type of surgery - but even more important with this one since it is so involved. A good surgeon will give you the best chances of a good outcome.

I am SO thankful to be done with all that crap you've mentioned in your post, moving infusions closer, putting meds up the butt, going to GIs, consults, second opinions. People say TRY THIS, try that, but those same people often aren't trying any of that either. Many are stable and just quick to judge. I have seen some successes with these things and I agree, try whatever you can tolerate. I hit the maximum tolerance and lost the maximum amount of my life that I was willing to give. I don't want to be chronically ill for the next 50 years.
Posted 7/26/2016 12:37 AM (GMT 0)
The other med is levofloaxin. I'm alergic to pennecillin, arythhro, amox.

Nososicklyirl- Yea, I'm not sure what he meant about taking the rectum Vs leaving it. We didn't get into too much detail. So my inflammation is only in the end. He said it would be a nightmare if we just took out that pet and left the rest. It's odd if that's what they normally do anyhow.

I'm just so relieved hat things are finally calming down. So here's another random question, I know while being on antibiotics, my birth control pill won't be effective. Does flagyl effect it as well? Not that I'm doing much of that lately with my symptoms, but better safe than sorry.

I guess the doc is doing the flagyl as a preemptive strike to avoid c-diff? This new doc sure knows what he's talking about. I'm realt happy I switched!!! I don't mind the enemas and all that other stuff if it'll make me feel better. I know notsosicklygirl, that it's a pain, but worth it than dealing with the symptoms or surgery, I would guess? I'm trying to avoid that at all costs, but if it has to be done, it has to be done. Fingers crossed this is going to nip it in the butt!

St_U - Now what is JDL??
Posted 7/26/2016 12:51 AM (GMT 0)
I am actually doing so well lately, that I would say surgery was BY FAR the best treatment possible in my case. Just my opinion, and you have to take into consideration that surgical results vary. I really have no concern about the toilet at all. My health is better than it's been in years overall, I don't go to doctors or need to have tests. I don't put chemicals into my body at all (unless you consider a martini a chemical). I am so happy to be back to living like a normal person. My stress levels are much lower because I don't have to think about my physical condition plummeting all the time, nor do I have to worry about having top-of-the-line insurance. I was able to use my FSA on expensive glasses this year - that's how it should be for a person in their 30s! This is a feeling I wasn't sure I would ever have again. With that said, I feel obligated to say "anything before surgery" because there are no guarantees you would love living with a j-pouch. I also get pegged as a "surgery pusher" at times, so I try to avoid that title :)

/bedsider.org/features/294-which-medications-can-mess-with-birth-control
/www.drugs.com/article/antibiotics-and-birth-control.html - might help with the abx question.
Posted 7/26/2016 10:50 AM (GMT 0)
" Since its proctitis and only in that area, he said the doc will most likely suggest a bag to let the rectum rest for a few months and then reattach. " I'm not sure that's correct, but the surgeon would likely clarify though. Generally it's a removal of the rectum and entire large intestine.
Posted 7/26/2016 1:21 PM (GMT 0)
I don't think your GI is well versed on surgical aspects for UC. I have never heard of a patient having a temporary ostomy to let the rectum rest. I had UC limited to the rectum, about the size of a quarter. That very small affected area left me in a severe flare for 2 years. Although my small intestine had no sign of disease, both organs had to go. I would never trust a surgeon to take one or the other...the disease will only manifest itself in the remaining organ.

Sue
Posted 7/26/2016 2:00 PM (GMT 0)
The other thing that doesn't make sense, is that, just because you disconnect the rectum, doesn't mean it's free of symptoms. With a 3 step procedure, you have a collectomy (colon removal) as step 1, after that step, you have your rectum - but it''s disconnected. During that time, you have the ostomy and you do not "use" your butt. I would say 2/3 of people experience debilitating symptoms from their rectum during that period of time - to the point that they are still living similarly to how they lived with UC. Some have pain, frequency, tenesmus, blood, accidents. I was very lucky because my disconnected rectum caused me minimal symptoms. They were there, but not what I would call debilitating. Would I have wanted to stay that way forever or risk reconnecting and letting things go back to the way they were? NO way!

We had a poster here called Christine, she posts on the Ostomy forum now. She had a perm ileo, but the surgeon left the anus and a tiny bit of the rectum. Now she's been suffering with proctitis in the rectum. It's a problem for her on a daily basis. Although it sounds like it would be a much smaller area and much easier to treat, less symptoms... it can still cause major problems.

I am sure it was a misunderstanding, or the doctor doesn't understand the surgery. If you decide to consult, you will probably get information in-line with what we are saying. I went on 2 consults, both highly regarded surgeons, both said the same thing. My GI said the same as well.
Posted 7/26/2016 2:51 PM (GMT 0)
I bet I misunderstood him as we were speaking on the phone on a Friday afternoon. He said it very briefly and I was pulled over in the car answering the call so that I wouldn't be driving and talking on my text.

I actually forgot the Canasa last night and the proctitis foam this am. I woke up feeling nauseous last night around 3 am and this am. I tried to have a protein shake this am but I wasn't feeling it. I did take a pepto and started the flagyl and antibiotic but I'm still not feeling like eating. I've got yogurt as a snack that I usually have around now, but do I force it or just not eat?

I just forgot the meds last night and this am bc they weren't on the counter like they normally are. I hope I'm not gonna pay for it!

Thanks for the info on the surgery though. Again, I'm hoping not to require it but if I do, il be asking the surgeon all the questions and comments you all posed as well.
✚ New Topic ✚ Reply