It will get better each and every day, just hang in there and good luck to you! PS Do you take any probiotics?
I am almost 2.5 months since takedown surgery. It does get better with time. I remember thinking I will never be able to work again, never go to the store etc...it just didn't seem possible with all the bathroom trips and all. However, I have been back to work 2 weeks now part time and I start back Monday full time. My mornings are generally good, late afternoons and evenings I go to the bathroom alot. I am nervous to go back full time but I have good co-workers that understand but a bathroom right next to the coffee pots where people congregate! That makes me nervous It will get better each and every day, just hang in there and good luck to you!
PS Do you take any probiotics?
It will get better each and every day, just hang in there and good luck to you! PS Do you take any probiotics?
Wow, Holly you have done pretty good being able to start back! I can't even think about that, as of yet. I am still so very weak! I am struggling every day just to do household cleaning. I am not getting very far anytime soon.
I still have major contractions/pain in the anus this morning. Still doing the canasa suppository. I wanted to do it this a.m. but took 1/2 vicodin and that seem to help and just laying low until it passes. Surgeon said I had sight pouchitis and to try that and call within week. Stay tune...!
I do take probiotics, metamucil wafers, 5 mg steroids and I did take a beano today. What else can I do? Getting so frustrated, crying alot and still waiting for the light at the end of this tunnel!
Roberta
I still have major contractions/pain in the anus this morning. Still doing the canasa suppository. I wanted to do it this a.m. but took 1/2 vicodin and that seem to help and just laying low until it passes. Surgeon said I had sight pouchitis and to try that and call within week. Stay tune...!
I do take probiotics, metamucil wafers, 5 mg steroids and I did take a beano today. What else can I do? Getting so frustrated, crying alot and still waiting for the light at the end of this tunnel!
Roberta
Roberta - I completely get your frustration. It is so hard wanting to get out there and live your life and you physically can't. Keep us posted on how you are doing. I think you are doing everything you can right now. I was crying every day in the beginning I think my husband wanted me to see a therapist. Now I cry a few times a week so I am seeing improvement. I keep a journal and write down little victories like last night was the first time I went out to eat for dinner since January. I usually can't go out to eat because like Holly that is the worse time of day but I forced myself. We just went to a quick sandwich place but it was a HUGE accomplishment for me to be out at night. Write down little victories when you have them so you can look back.
You are in my prayers as are all of you on this web-site. My favorite Bible verse that I have all over my house is that "I can do all things through the Lord that strengthens me." Don't know what I would do if I didn't have my faith. Hold on - it will get better - we have to BELIEVE that!!
God bless.
Christine
You are in my prayers as are all of you on this web-site. My favorite Bible verse that I have all over my house is that "I can do all things through the Lord that strengthens me." Don't know what I would do if I didn't have my faith. Hold on - it will get better - we have to BELIEVE that!!
God bless.
Christine
I think I will get some beano and try it. I think our belly's are much noiser because we don't have a colon and that was a good sound barrier now we have none and stomach noises can be very loud. Sometimes it sounds like I am hungry all the time and my stomach is growling for more food Which of course it is not.
Which of course it is not.
The noise thing I don't think will ever go away. My sister has had her j pouch for 20 years now and her insides still make noise. She said her co workers are always asking her if she's hungry. Lol
quote:The noise thing I don't think will ever go away. My sister has had her j pouch for 20 years now and her insides still make noise. She said her co workers are always asking her if she's hungry. Lol
I'm in the same boat, my stomach is always producing sounds that can easily be heard across room, lol. I'm just used to it by now.
To help keep track of the pouch performance I keep a diary in excel and chart it. It helps to see the general trend so you can look forward to where you might end up. I have attached the chart for my first 9 weeks in case anyone is interested.
Attachments
Images (1)
Kiwi,
I love your chart idea. It really puts a visual on it.
I love your chart idea. It really puts a visual on it.
Kiwi -
That is a great chart.
Thanks -
Roberta
That is a great chart.
Thanks -
Roberta
chrfor:
I would say I felt comfortable going out at about 2 months. I still got the urge more frequently, but was comfortable enough with myself to know I could control it and hold it in time to get to a bathroom.
Honestly, i've talked to so many people and heard so many stories and I always tried to relate myself to another persons story. Just know that you will most likely follow the common path, but your path will always have its uniqueness and that there is no true way to know when you will be at a certain point.
Just hang in there, keep your head and hopes up, and things will start to fall into place.
I would say I felt comfortable going out at about 2 months. I still got the urge more frequently, but was comfortable enough with myself to know I could control it and hold it in time to get to a bathroom.
Honestly, i've talked to so many people and heard so many stories and I always tried to relate myself to another persons story. Just know that you will most likely follow the common path, but your path will always have its uniqueness and that there is no true way to know when you will be at a certain point.
Just hang in there, keep your head and hopes up, and things will start to fall into place.
I am so sorry to hear about your frustrations. It does take time. I know that is hard to accept. Hang in there.
Still trying to keep the spirit alive! Fever, picc line installed, clear liquids on cipro and this is week 7 of takedown. Can it get any better than this? (A little sarcastic humor)
The good thing is the sun is shining!
Roberta
The good thing is the sun is shining!
Roberta
I am sorry your not feeling well. My take down surgery is schedule for July 3rd and your post has me a bit concerned.
About the weight loss..I loss 22lbs with the proctolcolectomy(also had divinci) no complications and was thrilled with the weight loss I was 285. now I am between 259-264 depending on the day. Will I loose more weight after the takedown...and why?
Again sorry your having a hard time...when they did your reversle did they go in through your stoma? is your pain based on the incision or something else?
thanks for the help
About the weight loss..I loss 22lbs with the proctolcolectomy(also had divinci) no complications and was thrilled with the weight loss I was 285. now I am between 259-264 depending on the day. Will I loose more weight after the takedown...and why?
Again sorry your having a hard time...when they did your reversle did they go in through your stoma? is your pain based on the incision or something else?
thanks for the help
I am 5'9 1/2 and went in at 134 lbs down to 115 lbs. After the takedown I was going 20 to 30 times a day for weeks and they couldn't get me on a balance between immodium and metamucil. I do have them stumped. I get rid of a problem and then another appears. For my takedown done on 4/30 my body would not start up. So, that is what some of the complications was from. I ended up in the hospital for 7 days when in fact that proc. is suppose to be easy. The first surgery was in for only 4 days that was a breeze.
I have them all stumped as to what is wrong with me so, they are giving my GI along with j pouch a complete rest for now. They are coming today for blood work hopefully, that will be better news. My WBC is always abnormal.
Hoping for better days -
Roberta
I have them all stumped as to what is wrong with me so, they are giving my GI along with j pouch a complete rest for now. They are coming today for blood work hopefully, that will be better news. My WBC is always abnormal.
Hoping for better days -
Roberta
Roberta, this sounds absolutely horrible. I am so sorry for what you are going thru. I hope they figure out what is wrong with you soon. You are in my prayers.
Roberta,
I am 6'2" and went into the hospital pretty sick in 2006 weighing a nice 185 pounds or so. When I got home 19 days later, after a week of fluid runoff (I peed SO much for a week), I weighted 148 pounds. So I can totally relate. I looked at my legs and thought, "Who am I anymore?"
My doc prohibited immodium for quite some time, and nothing helped me for months. I can relate to the 20-30 times a day, and up every hour at night. That was normal for me and I was told by everyone it would simply take time (longer for some than others).
The first thing that helped me at all was adding probiotics to my diet. Looking back, I attribute my post-takedown issues to my body simply needing to heal up, and re-adjusting my gut flora. I am also now suspicious of minor inflammation persisting after surgeries (I started taking sulfasalazine again for arthritis pain, and found it significantly helped me out).
So... all that to say that your recovery may be like mine: long and drawn out. I could say after 3 months I was better - though not much. By 6 months I was better still, but nothing like 8 times / day or so. It probably was over a year before things really settled down. I got to contrast that with my 8 year old a couple years later who adjusted SO fast to things (I was so jealous, but happy for her). She had about a month of nightime incontinence issues that resolved nicely on their own. She hasn't had any real issues to speak of since.
So hang in there!
Steve
I am 6'2" and went into the hospital pretty sick in 2006 weighing a nice 185 pounds or so. When I got home 19 days later, after a week of fluid runoff (I peed SO much for a week), I weighted 148 pounds. So I can totally relate. I looked at my legs and thought, "Who am I anymore?"
My doc prohibited immodium for quite some time, and nothing helped me for months. I can relate to the 20-30 times a day, and up every hour at night. That was normal for me and I was told by everyone it would simply take time (longer for some than others).
The first thing that helped me at all was adding probiotics to my diet. Looking back, I attribute my post-takedown issues to my body simply needing to heal up, and re-adjusting my gut flora. I am also now suspicious of minor inflammation persisting after surgeries (I started taking sulfasalazine again for arthritis pain, and found it significantly helped me out).
So... all that to say that your recovery may be like mine: long and drawn out. I could say after 3 months I was better - though not much. By 6 months I was better still, but nothing like 8 times / day or so. It probably was over a year before things really settled down. I got to contrast that with my 8 year old a couple years later who adjusted SO fast to things (I was so jealous, but happy for her). She had about a month of nightime incontinence issues that resolved nicely on their own. She hasn't had any real issues to speak of since.
So hang in there!
Steve
Hey Roberta,
Things will get better. I had my takedown 3 years ago tomorrow. I went back to work full-duty 2 months later. I am a firefighter/paramedic and let me tell you, the first couple of months being back on the truck doing 24+ hour shifts were not fun, but they got better with time. Our schedule changed a few months back on the truck and we went to a 48/96 schedule, meaning we were on for 2 off for 4 days. I eventually got back to working 3 days in a row without any complications besides the occasional pouchitis flareups. You just have to believe and have faith in yourself that things will get better. I definitely hope for the best for you at getting better and recovering as much as possible.
Things will get better. I had my takedown 3 years ago tomorrow. I went back to work full-duty 2 months later. I am a firefighter/paramedic and let me tell you, the first couple of months being back on the truck doing 24+ hour shifts were not fun, but they got better with time. Our schedule changed a few months back on the truck and we went to a 48/96 schedule, meaning we were on for 2 off for 4 days. I eventually got back to working 3 days in a row without any complications besides the occasional pouchitis flareups. You just have to believe and have faith in yourself that things will get better. I definitely hope for the best for you at getting better and recovering as much as possible.
Thank you -
I am still battling. On the picc line but now running 18 hours. I get a 6 hour reprieve from being hooked up! Still very weak! I am eating a little now. My mornings are really tough. Very sore internally and alot of bone pain in the morning. I finally stopped the steroids a couple of weeks ago and I think that is my problem. I do not do well weeks after being weaned off of steroids. Not sure what is next for me....trying to keep the faith!
Roberta
I am still battling. On the picc line but now running 18 hours. I get a 6 hour reprieve from being hooked up! Still very weak! I am eating a little now. My mornings are really tough. Very sore internally and alot of bone pain in the morning. I finally stopped the steroids a couple of weeks ago and I think that is my problem. I do not do well weeks after being weaned off of steroids. Not sure what is next for me....trying to keep the faith!
Roberta