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

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Ulcerative Colitis
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Posted 4/27/2019 12:51 AM (GMT 0)
Valli so happy to see you writing positive things,you've been through hell.You deserve some peace.Song one day at a time as you've heard one hundred times.Lots of peaks and Valleys for us all.Can we just have the nice newly paved road with no potholes etc.Bleeding was from belt line incision scab.Im sure if i took days off it would heal properly.Im using non stick gauze and not putting belt on too tight As long as it is not getting infected it will be fine.Ive been back at work for 3 weeks ,just not lifting too much.Valli i have the Big D every BM so thats the norm.Even though i use lomitil and imodium i don't want blockage so i take half of daily dosage.IDC what BM looks like.Just found out my mom[87yo] has non hodgins lymphoma.More test this coming week to see if its spread.Chemo soon which will wipe her out,she's only getting half dosage bc of her age.She's a tough one but this might be toughest thing she gone up against.Prayers for Mom[AKA The Boss]
Posted 4/30/2019 9:55 PM (GMT 0)
Song how are you feeling? I was thinking of you yesterday. Assuming you will be home for a few days. Take it a day at a time xoxo
3TChamp I am sorry to hear about your mom’s health and can they do something other than the chemo I know even at 79 my they didn’t recommend it for my mom . There are new drugs coming out all the time , and if she has insurance that may work. Praying for you guys during this time ....she does sound like a fighter and having family support is half the battle. Keep us posted .

Regarding myself it’s been close to 2 weeks now and I feel fantastic. I still go about 8 -10 times a day but without pain or that horrible gas that was renching me out of my sleep. I don’t know what happened and I am not questing it .
Off May 11 for our holiday kids are all looking forward to it . I just found out all the extras on top of the package . Looks like I need a second job to pay for this trip lol
They collect money for tipping which isn’t optional ( tip kitty ) so I have to put aside $500 US . For that amount the service better be fantastic because that’s way over$650 cdn . Still looking forward to it specially now that I feel normal again smile
Posted 5/1/2019 2:02 PM (GMT 0)
Hi all!
Lumpectomy went as planned yesterday. It looks like I have a dimple or a "divot" near the top/side of that breast now. (Steri strips are covering the incision for the next week or so.) At 63, I am actually not concerned with the cosmetics, but I figure we're all interested in medical stuff here, hence the description. The pathology report should not hold any surprises, because the needle biopsy already told us what was there, but I do have an appt with the surgeon in 2 weeks and will hear more. Also, apparently she excised the cyst that had shown up in the images.
The surgeon also got permission from my oncologist to remove my port, which was on the right side of my upper chest. (Apparently the oncologist is superstitious and likes to leave it in for a year post-chemo? So... I am almost 10 months post-chemo.) Surgeon pointed out, why not make use of the OR time and sedation and just do both things? I am thrilled to have it gone, but ironically, that incision hurts more than the primary reason for the surgery!

Champ - glad to hear you are coming along. I wish for you continued patience to take it easy and let this thing heal well. (Heal well! Healing Well! Ha! - Oh, and I just did take a pain pill, so my sense of humor is wonky.... smile
And it really stinks that your mom has to deal with this. I am sorry and hope her quality of life is not too affected by treatments. Keep us posted. You and your family are in my thoughts.

Valli - wow, glad you are finally doing well! It's funny how 8-10 times a day feels pretty darned good when there isn't pain! I hope those numbers continue to go down for you. The trip sounds amazing. I am organizing a trip to Europe for Fall, and I try to include most tips (local guides, etc) in the fee so folks don't need to shell out much extra, but still it will be $100 US each. But - this will be an amazing trip and such memories for you all!

I could probably go to work today but I worked ahead to be able to take today and hopefully tomorrow off, except for some things I can do from home. And re the pain pills - I've learned from others on here and I am taking them minimally, and also omitting all immodium and lomotil, etc, and taking the Metamucil, so I don't get backed up. I am grateful to those who've put out the warning about these things!
Posted 5/1/2019 3:05 PM (GMT 0)
That's great that everyone is doing well.
Valli, maybe the antibiotics knocked out the issue once and for all. I hope so - that's how it's supposed to work in these situations.
Song, it sounds like you're just about done with your C journey. It's been a long road but it's time to celebrate that you are back to good health.
Sorry to hear about your mom champ. sad
Posted 5/1/2019 8:25 PM (GMT 0)
Hi, Songlady, So glad to get your update to find out you're doing well. Great news that the surgeon also pushed to rid you of the old chemo port, in combo with lumpectomy, so that you won't need yet another procedure date for that nuisance! You definitely have been hit with more than your share, and continue to inspire us with your courage & grace in confronting medical adversities. Best wishes for a complete recovery from this latest DX & treatment regimen ASAP! Keeping you in my thoughts! / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/2/2019 12:03 PM (GMT 0)
Song I am happy to hear all went well. You have definitely had your fair share now it’s time to sit back and take it easy . Hopefully with a few extra days of rest you can go back to work Monday feeling more yourself.
What is a port ?

I am still feeling awesome and no other major symptoms to report so NSSG maybe it was the antibiotics I was on and off them for close to 3 months. Just thrilled, I can finally enjoy life and my family again.
Posted 5/2/2019 3:46 PM (GMT 0)
Valli - look up "medical port." In general my port was a small disc made of plastic or metal about the size of a quarter that sat just under the skin near my collar bone, on the right side of my chest. A soft thin tube called a catheter connected it to my jugular vein. (Having it put in felt creepy because of that!) I got my chemo through a special needle that the nurse would fit right into the port, and I also would have blood drawn through the port. It made sense when I was doing blood tests and chemo every 2 weeks, but I really didn't need it any more.

I am fine today, with minimal soreness, but mentally I thought I'd benefit from another day off. I'll be back at work this weekend.

I am so thrilled you are feeling better!

OH, I appreciate hearing from you! I am sure glad the surgeon thought to ask about taking out that port. Saved me time, anxiety, a trip to the OR, and a copay! I am hoping this chapter is short and sweet and barely a blip. How are things going for you?
Posted 5/2/2019 10:48 PM (GMT 0)
Songlady, I'm trying to recoup my pre-scope speed. The procedure definitely tired me out. Getting a new internist next week, which is not easy here in the city; this individual lists a special interest in women's health. Thereafter, I see gastro for post-procedure check, then my gyn-oncologist for biannual follow-up on the 2015 pelvic surgery mid-May. Hopefully all these office visits go issue-free because I still have the periodontal dilemma RE extracted implant site & its neighboring teeth to somehow resolve; not looking forward to that as I don't have dental insurance & the 3 perios I've seen 2017-18 all bombed. Grrrrr! Thanks for asking. / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/6/2019 5:26 PM (GMT 0)
Gosh, OH, ain't it the truth that we spend so much time dealing with all these medical issues....! Do you get nervous before the gyn-onc appointments? I sure get nervous before I see my oncologist. I go May 22 for bloodwork and a check-in with him. (Same day as I see the radiation doc. What a fun day. Morning in one direction, afternoon in the other!)
I had a crown about a month ago - went for a cleaning and they found a broken tooth that could have crumbled any minute and caused me big pain. So they got me in asap.

I had a good news phone call just before the weekend! The breast surgeon's office called to confirm that the cancer was confined to the duct and not at all classified as "invasive," and also that she took out the appropriate "margins" around the cancer. (I guess this is sometimes a challenge when the cancer is not visible. They had sent me for a high-pressure mammo and had secured a wire into the spot before the surgery to help guide her, and I guess it worked. Also, she has a reputation for being absolutely top-notch. smile

So, I believe radiation is still recommended to prevent recurrence, but non-invasive means no chemo. Good! I am still recovering from the last bout with that!
Posted 5/6/2019 10:12 PM (GMT 0)
Thrilled to hear that you're being spared chemo by the breast surgeon, Songlady!!!!!! Luckily, I have a calm, well-organized, positive-thinking female gyn-onc following up on my pelvic surgery-- so I don't get nervous prior to appointments with her. She discusses my case periodically with the dept. review committee & did get me out of annual CT-scans with double contrasts after the 1st one post-surgery caused me lasting side effects. My tumor was Stage 1B, came within .5 mm of growing into the abdominal cavity, but it was a common variety of non-hereditary cancer that gave me 80-86% chance of surviving Year 1 post-surgery w/o pelvic radiation follow-up, which is NOT recommended for IBDers due to likelihood of inducing intestinal obstruction (i.e., higher % change for THAT than for spread of malignancy!). So I have weighed my chances on the basis of past experience, which has resulted best when I took the fewest possible interventions. My body cannot bounce back from massive doses of chemicals plus I have small veins. Therefore, I try to think philosophically about my medical choices*, and really want to do an advance directive soon-- just in case of worst scenario. / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal) *** [* Having read Montaigne on illness during my grad student days!]
Posted 5/7/2019 4:34 PM (GMT 0)
Songlady that’s awesome news so happy things have worked out for both you and old hat . Both you ladies have been through enough now it’s time to sit back and enjoy life.
I am feeling terrific it’s so nice to use the bathroom without suffering afterwards . Still going a lot and every few days I have pure diarrhea but who cares.
I am off with the 4 kids Friday for our family vacation . I pray the long days , extreme heat , tour guide and food will all be kind to my body. Will only drink bottle water and go easy on my meals that way less stress to my digestive system.
Maybe I will lose the extra 10 pounds I put on just sitting around in the last year. Sure the heat alone will burn it off lol
Posted 5/7/2019 9:13 PM (GMT 0)
It sounds like everyone is on a great path now. I am so happy to hear it, and that you got good news songlady. You deserve a LONG break from health stuff.

Enjoy your trip Valli. What a relief it is that you're finally experiencing living well with your jpouch.
Posted 5/31/2019 1:43 AM (GMT 0)
How is everyone doing?
Posted 6/2/2019 2:52 AM (GMT 0)
All is well here . Just got back from Egypt a few days ago . Amazing trip . Wow wow the heat .. please don’t forget I am a Canadian and we don’t see temps like 43,44 and 45c ever. Other then the extreme heat we loved every minute such history to be able to touch tombs and building build over 3000 years ago was truly amazing .
My heath has been steady no major changes . I am getting some gas pain I would say every few days nothing like before but it stops me in my tracks and I usually have about 10-15 of time before I can’t hold it any longer .
Over all I can’t complain. I have to learn to accept this is the way my new system is working.
I also have liquid diarrhea every few days it literally comes out like a tap and within 2-3 hours it’s yellow . I have written down what I eat and so far it’s nothing I can pin point . But once again no big deal
I lost a few pounds in the last 3 weeks getting out and walking more . I gained the weight because I was a bump on a log this last year and now it feels great to be moving around. My appetite is way down I only eat now because I have to . This has been the last few weeks after a few bites nausea sets in , I am only eating because I can’t listen to my boyfriend give me a 30 minuet lecture on my heath and not eating . Hoping my appetite comes back and my stomach settles down .
Over all I am happy right now . Last year was a rough year of operations and long healing times .
This summer I want to sit back and enjoy it all .

Please let us know how all you guys are doing , I thought of everyone while I was away (6-7 ) hour bus rides give you a lot of “me time “ Once again this group has given me a place to unload all my health concerns and actually feel no so alone . Thank you guys again

NSSG thanks for reaching out and asking us.
Xoxo 👼👼
Posted 6/2/2019 4:42 PM (GMT 0)
Valli i give u alot of credit for not letting any health issues get in your way.Glad you enjoyed your trip.it gives us confidence when we go beyond what we might think we can handle.Your a tough one.Now wait don't tell me your boyfriend was nagging you?? Do men lecture/nag??No?? Aren't we always accusing woman of nagging???? Now who's the sex that's always right??? Can he be right about your eating??? Is it possible he is right???[just joking} You know he could be right??? well only UC patients know the ins and outs of when to eat and not to eat.So good luck and i hope you stay stable with everything.Good luck and be well
Posted 6/2/2019 5:35 PM (GMT 0)
Thank you for the update valli. Do you think you may have a tiny bit of cuffitis causing the urgency? I wonder if you could treat it minimally and get it to a place where it's not an issue. That trip sounds incredible. I really want to go there. Was it crowded? I hear about all these places and then you find out that it's packed with people, and suddenly it doesn't sound as interesting. We deal with that type of heat here in the southwest. It's dry, but hot. I don't mind it, everywhere is airconditioned. It's not ideal but I would take it over the snow and ice. I hope you get your appetite back too. Sometimes I go through phases where I am not very hungry. My BF's grandma told me as we get older we eat less... I notice it with myself, but then I will get in a phase where I can't stop eating. I am in one right now, luckily my weight seems to stay pretty steady. For that I am thankful smile When is your next trip? You seem go to interesting places often.

3time, how is everything with you? Pouch? Work? Ex-wife? kids? Dating? smile

Woogy, song?
Posted 6/3/2019 8:39 PM (GMT 0)
Glad you were able to enjoy your trip Valli. I also have days where I have no appetite but other days I can't stop eating. It's crazy. LOL

I'm still battling pouchitis. The doc switched me to Flagyl last Friday to see if that will help knock it out. I do feel better (more normal) when on the antibiotics. I just really wish I could get off them for good. That doesn't seem to be the case for me. But at least now I'm only getting up once at night to go so I'm sleeping a little better (well it's only been the past two nights). I hope it stays this way because getting up hourly is the pits and then I'm exhausted.

At this point though, I've come the terms with having to be on antibiotics continually if it keeps me feeling good. I would prefer to be med free but it doesn't look to be the case for me. Oh well, this is still 1000% better than having UC.

I hope everyone else is doing great and able to enjoy life with their new pouches. ;-)
Posted 6/4/2019 1:11 AM (GMT 0)
I'm doing great.Pouch is good,Moved into my place May 1st.Ex is a very unhappy person but that's her issue.Son graduated from Rhode Island and is going to middle east[he voluntered] with Nat Guard in November.Work is extremely busy,once warm weather comes it gets busy real quick.Dating???? Do i want to go there?? Now??? Dating/relationships take alot of work and im in no rush to get into that.Hernia surgery has gone well/no sign of it coming back
Posted 6/4/2019 1:52 AM (GMT 0)

Woogy said...

I'm still battling pouchitis. The doc switched me to Flagyl last Friday to see if that will help knock it out. I do feel better (more normal) when on the antibiotics. I just really wish I could get off them for good. That doesn't seem to be the case for me. But at least now I'm only getting up once at night to go so I'm sleeping a little better (well it's only been the past two nights). I hope it stays this way because getting up hourly is the pits and then I'm exhausted.

At this point though, I've come the terms with having to be on antibiotics continually if it keeps me feeling good. I would prefer to be med free but it doesn't look to be the case for me. Oh well, this is still 1000% better than having UC.

How did your biological discussion go with your GI? I remember that you mentioned that you wanted to discuss it. Have you tried combo antibiotics?
Posted 6/4/2019 7:36 PM (GMT 0)
I did talk to my GI about biologics and they said they don't treat pouchitis with them, only antibiotics. It was really frustrating to hear. I haven't tried a combo yet, I think they are holding off to see if switching brands help. I do feel good when I'm on them, I just can't come off as symptoms come back within a few days.

Champ - glad to hear your doing good. Congrats to your son graduating!!! I'm sure you are very proud. Having lots of work is a good thing lol. ;-)
Posted 6/5/2019 2:35 AM (GMT 0)

Woogy said...
I did talk to my GI about biologics and they said they don't treat pouchitis with them, only antibiotics. It was really frustrating to hear. I haven't tried a combo yet, I think they are holding off to see if switching brands help. I do feel good when I'm on them, I just can't come off as symptoms come back within a few days.

Did you have ulcers in your pouch? Ask for a crohns diagnosis if you have ulcers.

Antibiotics wore on me, after 3 years I asked for a biological. I was taking combo antibiotics for about 2 years.

You could doctor shop if you really wanted a biological.

There is no clinically FDA approved treatment for pouchitis, all this stuff is used off-label. There is not enough of us who have chronic pouchitis to make large scale clinical trials to get a medication FDA approved for treatment.

Did you ask your if they treat chronic pouchitis differently than normal pouchitis? I’d argue that they should be treated differently because antibiotics fix normal pouchitis but not chronic pouchitis.
Posted 6/5/2019 12:27 PM (GMT 0)
Morning all
3TC yes my boyfriend is the nagger but only in a positive way and usually heath related only. Congrats about your new place and your sons graduation. And I say “ yes” go out and date I met my BF over 4 years ago online and I couldn’t imagine facing this battle without him .
Plus dating is fun and entertaining at the same time. Go for you smile
NSSG I am a bit concerned there maybe a small amount of cuffitis still present .
The last few nights have been pretty rough the worst in over a month. I literally thought all this was behind me. During the weekend and up until yesterday I wasn’t eating a lot during the morning or afternoon, I found I was straining during my BM the urgencies were still there but little came out which then caused the gas pain to start.

Question can eating little cause gas pain?

Regarding Egypt NSSG it wasn’t over crowded in the tourist areas if that is what you meant. Now the streets and rds are overcrowded cars everywhere in the main cities.
The kids and I take a big trip over seas every second year and the Caribbean in between with my BF . I should be pushing my mortgage off with the extra money but creating these memories with the kids is priceless . We all know health issues can hit you suddenly so now I just want to enjoy all my time with the ones I love around.

Woogy sorry to hear you are still experiencing issues . I too was the same way the second I got off the antibiotics it went to hell. But the antibiotics caused heart palpitationssad
I agree with Keith you should shop around for a new doctor because your pouchitis should be treated as chronic and I always thought it was treated with biologics if the antibiotics weren’t working or you didn’t want to continue on them forever .
For myself the combo worked the best.
Posted 6/5/2019 2:57 PM (GMT 0)
I am sorry you had a rough night. When do you follow up with your doctor again? I hope you are able to keep it managed without having to take frequent medication. It seems like you've been doing great lately. I know keith said he was able to take antibiotics on and off to keep his pouchitis maintained for quite a while. If I were able to take something every few days, that wouldn't be too bad I don't think, but hopefully, you don't have to take anything at all. That is what I meant. I am used to city traffic, but lately, here, it's so crowded everywhere you go that it's not enjoyable.

3time, haha. I know what you mean about relationships, they are a lot of work, and they can be a lot of drama, but valli is right, they can be good for you. I guess when and if you're ready... Congratulations on your sons graduation!
Posted 6/15/2019 4:57 PM (GMT 0)
Hi everyone - OH, Q, so many others...!

valli - wow, sounds like a great trip. I can't imagine that kind of ancient history! How wonderful to see it! Sorry for issues since then. and - my surgeon said that NOT eating would indeed cause excess gas.
Champ - congrats on your son's graduation! and I am glad the hernia repair is healing well. At some point you might meet someone interesting, but.. your comment about not being sure if you're ready? - I would think you might need a little time to breathe after recent drama in almost every department of your life (health, which affects job; divorce, moving, etc!)
Woogy - how's it going? Sounds like your doc doesn't like to think out of the box, and pouchitis treatments need some creativity.
NSSG - always good to have the input of a "Pouch Mentor!" smile And Keith!

After my breast surgery I had a bit of what I assume was pouchitis. Prior to that I'd found a perfect balance of foods, probiotics, a little immodium, some Metamucil - and then of course for surgery I had to stop everything for a day or two. A week after I realized I was going a lot, with urgency, discomfort in lower abdomen, etc... so (per my surgeon) I did 48 hours of Cipro/Flagyl. It fixed my gut, got things re-balanced... but 12 hours after the first dose, my fingers and feet went numb. Darn! The chemo-induced neuropathy had been 75% gone, but now a month after my antibiotic fling I still have more tingling than I did before those few Cipro pills. So I need to get some other option from the surgeon. I'd like to have something on hand for when we go away this summer.
Other than that, no gripes. My colon recheck bloodwork was fine.

DH and I are walking at least 10,000 steps briskly, at least 4 times a week... I've just finished my first week of radiation (5 days a week for just under 4 weeks) and so far it's not a big deal.... and work has been long, stressful hours, but that is starting to improve with the lighter summer schedule.
One of my happiest things is that I have found I can eat tomato-based things with only the slightest burn. I'm going to Italy for 10 days at the end of September, and I do want to enjoy the food!
Posted 6/16/2019 12:32 PM (GMT 0)
Thanks Song.When i look back on the last say 2-3 years it makes you think"Did i go through all that??[Divorce[actual legal seperation so i can stay under her health insurance til im 65],4 surgeries,finding my own place[which has been great].Surgeries had to be done bc UC wasnt getting better,but i was concerened not having insurance if we followed though with divorce so at end of 2017 i thought i better do this surgery thing sooner then later.Only issue i have sometimes is loose stool coming out while sleeping,its not alot.Im trying to eat lighter later in day.Maybe take Lomitil,Imodium more often????.My mom is having her 3rd round of chemo Tuesday so thats a big concern.Only has lost her hair so far,so far so good .As far as relationships alot of cold showers are needed now that Steve the stud is a free man[thats a joke].See once us men are free we dream alot .Im in good shape for my age 6'5-225.Yes i want the benefits[think you understand] of a relationship but do i want the relationship??? So i will describe any woman i run into and my Healinwell girls[Valli and Song] will advise me to keep her or Adios[ha ha].Hope everything is good with you all-Be well my friends
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