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Posted 10/15/2018 11:26 AM (GMT -5)
Thanks for responding to her. It just seems so unfair to go through so much, when the chances of even ending up needing surgery are quite small, and then to end up with more issues... I am so thankful you've found ways to manage yours & to continue to life your life to the fullest. I appreciate that you stick around here to help others.

So you think that the upper wouldn't have shown anything? I bet you're right. It's like it started attacking the pouch because the other part was gone, not because it was attacking there to begin with.
Posted 10/15/2018 11:48 AM (GMT -5)
The way that I look at it was that both of my grandfathers had colon cancer and I had UC, I was highly likely to need my colon removed because of precancerous issues. Having surgery was the correct thing for me to do, I was prepared to deal with pouchitis or go back to an ostomy if I had to. My quality of life is better now than when I had UC.
Posted 10/15/2018 11:58 AM (GMT -5)

notsosicklygirl said...

So you think that the upper wouldn't have shown anything? I bet you're right. It's like it started attacking the pouch because the other part was gone, not because it was attacking there to begin with.

I never really thought about it, I try not to over analysis it, just like what comes out of the backend end with constituency or not. It's all routine now, I couldn't even tell you have many times I went yesterday or this morning. Most people don't count how many times they pee. If something changes then you notice it. Again, it is all my new normal and routine.
Posted 10/15/2018 12:40 PM (GMT -5)
At a certain point, when you say 'no way to prednisone', and you're not responding to drugs, surgery is the only answer. Hopefully some day there are more options, but with the CC history and the bone issues from prednisone, you made the best decision. I had a precancerous polyp when I had my first scope. it was very strange since i was in my 20s, but it always made me feel like something sinister could pop up in my colon at anytime. That polyp, my unresponsive UC, and the awful side effects from prednisone made surgery a good option for me. I wasn't going to walk around 30 pounds over my healthy weight for the rest of my life to save my sick colon. I don't count either. I don't really care a ton, so long as it's not urgent.
Posted 10/16/2018 7:13 AM (GMT -5)
Keith I agree with NSSG regarding the upper part it does sound like it started attacking the pouch because the other part was gone, not because it was attacking there to begin with. It is like my arthritis I have had since I was a child it was always under control and didn't effect my life, now with my colon gone it has decided to attack most of my joints So I still have an inflammatory disease it is just attacking something else.
Posted 10/16/2018 10:49 AM (GMT -5)

notsosicklygirl said...

There is a person on the ostomy board with CP who is on stelara, and tried antibiotics I think, and she's not having luck getting it controlled. It's nice to think, and hope, that if it happens to us, we will fall into the % that it's "easily manageable" but we have to be realistic, some people do lose their pouches over it. I hate to be negative, but i don't want to paint a false picture about the seriousness behind the decision to have surgery.

I've been thinking about this post for the past 24 hours or so. It might be bad math but ~25% of UC patients have surgery and a smaller % of them have j-pouches (say 80% - total guesstimate) so that leaves about 20% of UC patients with J-pouches. So 10% develop CD/chronic pouchitis which would be 2% of overall UC patients (me being one of them). Say that 25% of them need their pouches removed due to pouchitis, cuffitis, construction issues or other. That would be .5% of UC patients but an even smaller % for pouchitis. I'm not trying to minimize anyone's issues here but the % is so small that it shouldn't be debated too much. Yes, it is one of the worst case scenarios for a j-poucher.

If I could go back in time I would tell my younger self to have surgery sooner, knowing what I know now about living with chronic pouchitis.
Posted 10/16/2018 11:31 AM (GMT -5)
That makes me feel a little bit better. I was really scared about pouchitis before I had surgery, and so far, I have been lucky, so I guess there is no reason to assume the worst, especially since the odds are quite low. It's important to take the decision seriously, but also important to consider the reality that living with UC is no picnic and you could give up many, many years only to end up having no option but surgery. I should have had surgery sooner too. I guess I waited because pred worked well for me, and I responded minimally to a few medications, but overall I spent way too much time nearly housebound and unable to further my career and future... I lost a lot of years I could have spent living - instead I spent them focused on doctors, toilets, pumping drugs into my body, regressing in my career and wasting tons of money trying to save my colon - and it ended up being unsalvageable anyway. smile
Posted 10/17/2018 8:50 PM (GMT -5)
NSSG I could of put off surgery. Mine was not an emergency case. I had situations in my life besides a very inflamed colon to go the surgery route. I'm 59-getting divorced(I have health insurance thru wife). These 3 things made my decision easier. My quality of life wasn't going to get better so having surgery was the way to go. My Gastro Dr and surgeon both agreed. Never an easy decision. My decision was kind of made for me
Posted 10/18/2018 7:33 AM (GMT -5)
The insurance thing rules our lives, doesn't it, Champ? My insurance has always been through my husband, and I knew he wanted to retire in a year or two. That combined with abnormal cells turning up in twice-yearly colonoscopies got me to schedule my surgery. I am so glad I did, since they found the cancer when they got in there! (It was apparently in the middle of the thickness of the colon wall, so the scoping would miss it except for the random cell.)

Then, a month into Chemo, Hubby got laid off. Since then we've been on COBRA. Right now we are planning for next year. He will go on Medicare and I will get insurance on the Marketplace - we've started the process of giving figures to an insurance broker.

The frustrating thing for me is that symptom-wise my UC was not bad. It had been a few years since I'd had even a mini-flare and had gone more than 4 times a day. So this post-reversal thing freaked me! I hadn't had frequency, pains, urgency like that since 1986!

Now things are definitely calming down. I am going 9-11 times a day unless I eat something that is gassy or causes D. Up two times last night because I had to pee, but emptied pouch while I was there. I am hopeful for an uneventful day at the family wedding this weekend!
Posted 10/18/2018 11:22 AM (GMT -5)
Insurance played a role in my decision to have surgery too. I've always worked, and had my own insurance, but I felt very nervous being dependent on a job to afford medication to treat a chronic condition. I know I could just "get another job" if I were layed off, but it's not always that easy, and COBRA is expensive and insurance plans vary in cost and coverage. I am not married and i don't intend to get married so getting benefits through a spouse wouldn't be possible. I really only have myself to take care of me, and I don't want to ALWAYS be tied to a job. If i want to take a year off, I'd like to be able to do so. Living with a chronic illness that is severe and requires expensive medication is very limiting on lifestyle. You're pretty much stuck, you're either working to have insurance, trying to work the system to get treatment for low cost or free, marry someone and hope they will take care of your insurance needs, maybe move somewhere with socialized care or freelance and hope you make enough to afford a ACA plan that doesn't provide much and strains your pocket. Since surgery I don't need to go to doctors, have tests, or take drugs. It's given me a much better outlook on the future.

champ, i am sorry to hear about your divorce. Wasn't she around helping you through all the steps? That's nice of her...
song, I am sorry about your husband's layoff.
Posted 10/18/2018 5:32 PM (GMT -5)
NSSG. Not even a text to say how are u doing. That's y I'm getting divorced after 23 yrs. I don't care how much u might dislike a person basic common compassion should at least have u send at least a text. We have been Thru years of marriage therapy and she hasn't changed a bit. She's as cold as they come. I have many great things to look forward to. Better health. A happy home enviroment. All positive things going forward.
Posted 10/18/2018 7:31 PM (GMT -5)
I had my take down about 2 weeks ago now. Things have been relatively simple. Ive had a few complications with the main one being itching. I used canestan extra (Clotrimazole + Hydrocortisone) for the itching as many people said it might be related to a yeast infection. It helped tremendously but I'm not sure if it was the hydrocortisone or Clotrimazole (Anti-fungal) that helped. I use the bathroom only 4 times a day now and I am able to most of the things I could do before surgery. I sometimes still have a little itching and using some sudocream usually helps with that. Anyone else had problems with really bad itching and how did you get through it?
Posted 10/18/2018 8:09 PM (GMT -5)
I have had it, sometimes it requires a trip to the surgeon for follow up, but the stuff you're using probably helps. The problem with OTC products is that they aren't that strong. Prescription cream would probably have it wiped out in a second. It sounds like you're doing really great Genius. I am happy for you.

wow champ. I had no idea. It must be weird to be together for all that time and then split. My parents did it and they have a weird relationship now. I don't think she would call him, or him her, if they had a procedure of any sort. They might call if they needed something, but not to check up on how the other person is.
Posted 10/18/2018 8:24 PM (GMT -5)
NSSG. Therapist said my wife is dangerous enabler. I caught her sending Beer to my 18 yo son at college. Now that's ****ed up. That's only part of the story. Day I got home from first surgery my son had 7 friends over. Now wouldn't it be nice to tell him another day. But wife can't say no to our children. Beyond sad. Nothing surprises me with her dysfunction. I'm happy I'm healthy and feeling great. Life isn't easy sometimes. We have bumps in road and we have potholes sometimes. We who have had UC have dealt with major potholes. I'll be fine. Thanks
Posted 10/19/2018 7:22 AM (GMT -5)
Sorry to hear you're going both marital problems and recovery from a surgery, talk about a double-whammy. In the end, perhaps it is turning the page on multiple unpleasant things (UC suffering and a marriage that wasn't meant to be), and you now have a bright future to look forward to without either of those problems holding you back. Try and stay positive smile
Posted 10/19/2018 4:26 PM (GMT -5)
Always positive
Posted 10/19/2018 11:08 PM (GMT -5)
3timechamp it seems like you made a wise decision, you get to a point in your life where you really need support health wise and if your own spouse is not standing by you then bye bye.... I am very lucky my boyfriend of 4 years was my rock, I was in the hospital for 5 weeks before my surgery and he came everyday to visit even after a 12 hour shift ( police officer ). If your wife had so little respect for your health you are truly better off without her. I rather be alone then with a person like that.

I have my second follow up appointment Tuesday and I still have a few concerns
I am still going around 15 times a day sometimes more
I have server pressure in my back door that radiates towards my front area, its so bad at times that I cant stand and I have to sit with a heating pad under my rump. The only real difference is my BM are no longer all diarrhea like they were a few weeks ago. They rang from mush to small formed little pieces with the occasional now diarrhea.
Posted 10/20/2018 4:11 AM (GMT -5)

valli1234 said...

I have my second follow up appointment Tuesday and I still have a few concerns
I am still going around 15 times a day sometimes more
I have server pressure in my back door that radiates towards my front area, its so bad at times that I cant stand and I have to sit with a heating pad under my rump. The only real difference is my BM are no longer all diarrhea like they were a few weeks ago. They rang from mush to small formed little pieces with the occasional now diarrhea.

Have you tried taking Pepto for a few days in a row?
Posted 10/20/2018 3:04 PM (GMT -5)

ks1905 said...
There are medications that you can take before bed to help with night incontinence like imodium, Lomotil, or tincture of opium.


So I've tried imodium during my flare (I know about the Megacolon risk) and I'm still pooping myself in the diaper when I take it. Will imodium help a greater deal when there is only the small intestine and no more inflammation?

Do you think you could have avoided getting pouchitis if you have gotten the surgery done sooner?
Posted 10/20/2018 4:51 PM (GMT -5)
I haven't had imodium seem very helpful since surgery, but i don't really feel like i need it regardless. I am okay without. You shouldn't have urgency after surgery, without urgency, there isn't as much risk of pooping yourself.
Posted 10/21/2018 12:29 AM (GMT 0)

Andrina said...

ks1905 said...
There are medications that you can take before bed to help with night incontinence like imodium, Lomotil, or tincture of opium.


So I've tried imodium during my flare (I know about the Megacolon risk) and I'm still pooping myself in the diaper when I take it. Will imodium help a greater deal when there is only the small intestine and no more inflammation?

Do you think you could have avoided getting pouchitis if you have gotten the surgery done sooner?

I have no clue, that’s an unprovable what-if about pouchitis. I had really bad pancolitis from the beginning. Cyclosporine twice and two 20+ day hospitalizations.

My only what-if is if I had surgery sooner would I have more of the biologicals available to me for pouchitis. I took most of them to fight UC. I got UC before remicade was approved for UC.
Posted 10/20/2018 7:39 PM (GMT -5)

ks1905 said...
I have no clue, that’s an unprovable what-if about pouchitis. I had really bad pancolitis from the beginning. Cyclosporine twice and two 20+ day hospitalizations.

My only what-if is if I had surgery sooner would I have more of the biologicals available to me for pouchitis. I took most of them to fight UC. I got UC before remicade was approved for UC.


Would you consider going back to the stoma if bioligics no longer work?
Posted 10/20/2018 8:57 PM (GMT -5)
KS 1905 I took it for a few days then stopped when I saw no difference . I was hoping it would help . I am also having small traces of blood off and on for a few days now . Very little bit some of the BM pieces have it around and when I wipe there is some but the next time I go I see no blood . I don’t understand that at all. And it’s not what I am eating .
When I had my UC I was pouring blood all day long . I have to
say seeing blood is my worst nightmare. But like I said there is just a little so not sure what it means.
Posted 10/20/2018 9:11 PM (GMT -5)

Andrina said...

ks1905 said...
I have no clue, that’s an unprovable what-if about pouchitis. I had really bad pancolitis from the beginning. Cyclosporine twice and two 20+ day hospitalizations.

My only what-if is if I had surgery sooner would I have more of the biologicals available to me for pouchitis. I took most of them to fight UC. I got UC before remicade was approved for UC.


Would you consider going back to the stoma if bioligics no longer work?

Absolutely, it’s a quality of life thing. But it’s a big surgery that I’d like to avoid. I was happier with an ostomy than with UC.
Posted 10/20/2018 9:17 PM (GMT -5)

valli1234 said...
KS 1905 I took it for a few days then stopped when I saw no difference . I was hoping it would help . I am also having small traces of blood off and on for a few days now . Very little bit some of the BM pieces have it around and when I wipe there is some but the next time I go I see no blood . I don’t understand that at all. And it’s not what I am eating .
When I had my UC I was pouring blood all day long . I have to
say seeing blood is my worst nightmare. But like I said there is just a little so not sure what it means.

Occasionally I get a little blood after whiping. A very tiny bit of blood.

Usually blood is more of a cuffitis issue than pouchitis. Do you have any left over canasa? That’s what they normally start with for cuffitis treatments.
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