J pouch runs life as well

Hey Roberta,
It does get better with time. I still have episodes that I get up several times a night, a lot of it depends on what I eat though. I'm going to suggest what a lot of people told me, keep a food log. When something causes you to be really down and having to go a lot, try and eliminate eating it. You've only been postop for a couple of weeks, it took about a month for everything to start working a bit better for me. I know everyone is different, you just have to persevere. I understand also about being the energizer bunny, I'm the same way, before I got sick I was working 100+ hours a week on a regular basis. I lost 96 lbs at my peak weight loss, now granted a lot of it I wanted to lose, but not by that means lol. I'm 6'1" and went from 240 down to 144 in literally 38 days, so I know where you're coming from. You might have a case of pouchitis too. I notice that my frequency jumps dramatically when I have a flare up and the pain is horrid with it as well. I'll usually get a 2 week script of Cipro/Flagyl and by day 3 I start feeling better. I hope that you start feeling better soon and don't give up hope, it does get better.

Joe

It can be really hard for some early on but it will improve over time. I can't answer why some people have a tougher recovery than others but I have been coming to this board for almost two years now and I have read many times the same things you have just written and then posts back saying they are so much better a few months down the road.

Could it be possible you have pouchitis? Sorry you are feeling so miserable. I hope you feel better soon.

Roberta. Where did you have your surgery done? I am so sorry for what you are going through. I know it is very difficult and there are days when I get tired of fighting. I will continue to pray for better days for you.

Since you've just had your takedown, you need to go slowly. Your body has to heal and adjust. I think I was 6 weeks before I even felt slightly normal.

The bowel movements should begin to reduce in frequency as well. Try avoiding anything with lots of fiber for awhile (4-6 weeks).

I found rice and cheese to help bind and slow things down, just be careful you don't slow things down too much or you'll be straining.

I found immodium in the beginning to be a necessity. I no longer use immodium unless I'm going on an all day hike.

Fatigue gets better after your body heals. I think fatigue is a way for your body to tell your head, HEY, I'M NOT DONE HEALING YET.

If you have cramping, I found that marijuana stops that quickly. MJ also helps put weight back on by giving you the munchies.

Try not to push yourself too hard. It's easy to over-do it when you so desperately want to be "normal" again, but your body must have time to heal. Don't set yourself up for failure and then get depressed. Try and take it slow if you can.

FWIW: I think I had 10-15 BM's a day in the beginning. Plus butt burn and butt itch. Those get better after a week and then disappear. Butt itch is a SCRATCH ME RIGHT NOW type of thing. Honest, sometimes a q-tip was the only way to get it to stop.

Thank you all for the encouraging words! It is getting real hard. It takes me hours to get ready in the morning only to have to sit and read. The pressure/pain I am feeling (I believe) is thrombosed hemorrhoids in and out of the anus also not being able to just go. I go a little at a time still. When the j pouch works right it empties out and I feel so much better but that isn't the case all the time. I keep having to do liquids morning and afternoon and one meal. That seems to be every other day and then my j pouch will empty out real well. Not sure why this is.
chrfor I had my surgery at the Miriam Hospital in Prov., RI. My surgeon did it by the DaVinci which he used a robotic machine. They called the proc. robotic proctocolectomy. I was his third patient with this. Of course, I asked this after both my surgeries were done. The benefit was less scarring. I really don't care about that just want to be normal (whatever my normal is). I want this pain to stop already AND just go!
I certainly have to get in touch w/my yoga teacher missing my mental health fix as well. I think it is because of lack of sleep, pain and really don't want to eat. I am trying to keep my strength up. Thanks for listening!
Roberta

It's pretty challenging in the beginning and at less than two weeks out what you're going through could be considered normal. Are you taking medication or supplements (besides the Vicodin)? Is your doctor okay with you taking imodium, lomotil or fiber supplements?

Is your pain constant? Is it just when you eat? Do you have problems with evacuation (other than the number of times per day)?

Start keeping a food diary so you can ascertain if certain foods are problematic right now. If they are, eliminate them from your diet and reintroduce them again later. Some problem foods are dairy, eggs, sugar, tomato products, wheat products, caffeine, sodas, fruits/fruit juices/smoothies. Even some of the recommended foods don't work for all of us. Peanut butter and applesauce don't have the desired effect on me. I know it's all trial and error but it's the only way you'll figure out what works best for you.

Try to measure advancement weekly or monthly rather than daily. It's often very difficult to tell if you're feeling better than yesterday.

But.... if you think there's something wrong then go with your feelings and give your surgeon a call. If he says all is good at least you won't have to dwell on the 'what if's' for a while.

kathy

It does suck in the beginning, but it will pass. I can hardly recall all of the difficulties without stopping and thinking hard.

The worst, IMO, is the mental pain. It didn't take much pain in my butt to cause my mind to start whirling with what if... and could it be... questions.

You have been moved out of your normal routine and having to adjust, and that is hard. The one thing I remember thinking through all of this I'll share with you. . .

You can swim against the river or with it. . .you end up in the same place. Why arrive exhausted?

Hang in there! It gets better!

I am finding that food in general is my culprit for going and not going! I am down to taking metamucil wafers only. I do have substance when it does come out. Every a.m. I have contraction pain just like UC. I feel like the pouch doesn't empty out enough. The pain is exhausting so after it passes which is anywhere from 1 to 2 hours all I want to do is sleep. I am taking probiotics and advil because I feel so inflamed internally. I am wondering if it can be inflamed a.m. and at night. During the day I do get some relief for a few hours and then the pain starts back up around dinner time. I feel so raw internally. It is such an effort to walk, I do try but I am not getting very far. As far as food goes, I stay away from all fiber, caffeine is been totally eliminated from diet for a long time now. I try to get lots of protein with shakes and lots of liquids. I still feel like I am melting away! Oh well.....trying to hang in there!
Roberta takedown 4/30
rehospitalized 6/1 failure to thrive dehydration and still feeling like that!

Hi Roberta,

It is very frustrating. I had my takedown one week before you did and I have awful days still. The pain can be horrible. I just talked to my dr's office today and they say it can take up to a year before our bodies adjust and that everyone is different and basically everything we are experiencing can happen and everyone is different. There are very few that have no complications after this surgery. I am keeping a food journal but honestly there is no rhyme or reason to how I feel. I can do the exact same thing one day and be good and then do it again another day and be horrible.

Patience is the key and it's hard because we want to get out there and start living our lives but our bodies wont let us right now. I talk to people who have had their jpouch over a year and they are very encouraging and that's what keeps me going (that and prayers!). I know some day this will be worth it and will be better than suffering with UC.

Christine
Takedown: 4/23/12
Had UC for 32 years

I am 7 weeks post take down and have been struggling with weight as well. I found protein shakes to cause liquid BM and boiling acid burn. Now I roast organic chicken tenderloins and eat them mid morning and mid afternoon along with a banana and small sandwich of some description. Goes down and out well.

I was underweight for about six months after takedown. Then gradually I started gaining it back. And now guess what? 1.5 years later and I have 10 extra pounds on me that I don't want! Believe me, the weight will come back...it may take time though.

It is so hard to believe at this point in the recovery process that you will find a "new" normal and it will be a good quality of life. My first 3 months after takedown were miserable and exhausting for me. It gets better. For me, after 3 months there was improvement, 6 months better and at 1 year I can truly say a new normal was in place. Those first 3 months were miserable. It gets better...

karen

Thanks Karen - that is hopeful and encouraging to hear. I think those of us who are a few months out after takedown and still not feeling well - we get very frustrated and don't see the "light at the end of the tunnel". I am hopeful that in a month or so things will get better.

Appreciate your feedback.
Christine

agreed....

ive resolved myself to understanding i need to bsically not eat very much, and eat boring...

i cant wait for the turn around.

Roberta and Ro. Keep me posted on how you are doing. Here's to hoping things will turn around for us soon. God bless.

i most certainly will. really annoyed by it all the past week! agh!

Roberta, who did your surgery? Have you been in touch w them to discuss? I'm in MA too and have seen or talked to many surgeons here...

I hear you. It is such a rollercoaster ride. I had a horrible day yesterday - so much pain, pressure and nausea and today I am feeling pretty good (thank God). It is so up and down and it will probably be like that for a while so we just need to appreciate the good days. Hang in there.

Chrfor,

I'm so sorry to hear what you are going through. It pains me because I went through it too and I know how bleak life can seem. Everyone you see going through their day without even thinking of a bathroom while it is running your every day life. It really gives you a new perspective on everything.

I don't know how long it's been since your takedown. I had what you had for about 1.5-2 weeks. Then I started taking 3 Imodium a day (2 in the morning one at night) and it made things get more bearable. For weeks 2-5 I went about 6-10 times during the day and 1-2 times at night.

Then I developed pouchitis (i might have had a simmering pouchitis since the beginning) and went on Cipro (2pills/day for two weeks).

This is when the improvement really happened. I actually have many days when I don't think about even having a j-pouch!

My doctor decided to taper me off cipro for some reason (i'm not questioning him, he's rated one of the best doctors in america for GI) so right now i'm on one pill every other day as well as my 3 imodium/day.

I'm 3 months out of takedown, and even tapering off the cipro things have remained wonderful (and I ask God that they continue to do so).

Up until I got on the cipro, the imodium was having me going 7-9 times a day and on average one a night. Now i've been going about 4-5 times a day and sleeping through the whole night. And i've been eating anything as well as exercising.

Maybe talk to your doctor about starting antibiotics depending on how far out from takedown you are. and if you are not, maybe get on an imodium regimen.

Keep your head up, and know that every day you get through is a day you get stronger. And when this settles down for you, which it will, you will feel like you can do anything.

Hang in there.

Simplex - I'm on 4 lomotil each day along with metamucil. Would they put you on antibiotics for no reason? What are the signs of pouchitis?

That is so encouraging that you feel well. I am anxiously waiting for this days. I get out a little each day but have not been out at night since January when my first surgery happened.

Christine

Simplex - at what week or month from takedown did you start really feeling better? I am 7 weeks out from takedown so almost 2 months. I am going about 8-10 times per day and 1 time at night. My dr said that is about normal for this time....

i agree about the rollercoaster...im also interested in your questions you were asking of simpleX...

christine, how much do you think you eat a day? calorie wise if you even know, otherwise how many meals?

Ro - I eat my 3 meals a day with snacks in between. I usually have a light dinner and don't eat after 7:00 or so. I usually have to go once during the night. I have lost 12 pounds since the surgery and have gained about 2 or 3 back but have not been able to gain much more. Sure that will come with time. I don't really know how many calories I eat - don't keep track of that. Hope that helps.

Christine

It souunds like we are all in similar places as far as takedown goes. I went to surgeon this afternoon and I have pouchitis. He started me on canasa suppositories I am to call him back within a week to let him know how things are going. Is anyone having extreme nightsweats as well? I wake up soaking wet during the night, now. Started to go a little less at night but also watching my intake at night. Not feeling too well still! This is another rough road and one I am not sure how long I can give it! Geting too weak to care!
Roberta

I am with you guys as well, 8 weeks today post take down. I am going 5-6 times per day and 1-2 at night. I am taking about 5-6 lomotil per day and Metamucil twice. I am eating 5 meals per day. Biggest issue for me at the moment is going at night -seems to take for ever and I am up 30 minutes at a time I told my doc and he was like 'have you tried just going back to sleep'. Stupid question. If I try that I get woken up 5 minutes later 'just catching it' in time. Physically I feel mediocure, mentally worse.

You just had your takedown not even a couple weeks ago. It does take time to get to a normal place, but it won't be like before ever getting sick. You may need Immodium or Lomotil to help cut down on the bathroom trips. When I first had mine many years ago, in 1995, it was hard, but now I really don't go any more frequently than I'll pee. It's a combined trip. After eating I'll end up in there soon after, but it's quick, and rarely do I wake up at night.

It just takes a while. It can take a few months.

Try to think of it this way. Come January, with the new year, you'll have a new life. It'll be easier to put all this behind you. So count down until then. Chances are great you'll feel great before then. But it can help to have a date you count down to for it to all be over. When I had my daughter in a homebirth, and she was coming out face-first, I picked midnight as the time I knew it would all be over, and counted down until then, and it helped so much! She was born at 6:26pm. But having a time to count down to helped make it seem like progress was made (with face-babies, there's no "the head's out," to make you feel like there's progress - it's literally all or nothing!). You don't feel progress, which is discouraging to you. But counting down to a date can give you the sense of progress and make it easier.

Canasa if usually given for cuffitis, not pouchitis. So if you don't see improvements quickly get ahold of your surgeon asap. or go to your GI doc, sometimes they are more capable of handling post surgery care. Just make sure your docs are extremely experienced with jpouches.
Night sweats could be caused by pouchitis. But also, they could be from your body still being affected by the surgery, getting anesthesia out, iv drugs out etc..
REst rest rest. Eat little meals lots during the day. And get back to a doc if you don't see improvement soon.

quote:

Simplex - at what week or month from takedown did you start really feeling better? I am 7 weeks out from takedown so almost 2 months. I am going about 8-10 times per day and 1 time at night. My dr said that is about normal for this time....

I think at two months I was going about 6-8 times a day and once at night. However, I have also been on 3 imodium/day so if I didn't take that it would be more.

I started feeling really good like 3 weeks ago (im s a little over 3 months out) because of the cipro. the signs of pouchitis are:

1. Very watery stool. 2. High frequency. 3. Urgency. 4. Maybe blood.

I was going like 6-8 times a day and randomly shot up to like 10-12. Doctor ordered cipro and it all turned around.

That's definitely normal regardless though. My doctor says he only really hears about people's frequency improving, not getting worse as time goes on.

Simplex - thank you for your response. When did you feel well enough to go back to work and go out at night. I still have a lot of pressure all the time (not in the morning though - weird) and feeling like I have to go. Dr. said becuz pouch is still small and expanding. I definitely feel better than when I came home from hospital. My main issues are the pressure of feeling like I have to go and gas pains. I have not been out at night not have gone back to work yet because I work nights. I want to get back into my life so bad but don't feel up to it yet. I also get really tired by end of the day.

So you relate your improvement to the Cipro? I don't think a Dr. would just put me on that if I don't have signs of pouchitis. I don't really have any of those signs besides the pressure which I have told them about. I am going about 8-9 times per day and it was 10-12 before so it has gotten better not worse.

Thanks for all your input. It helps to have someone a little ahead of where you are at. Appreciate it!

I was at the 3 month mark before I started to get two or three good days and okay nights. I kept a detailed food journal and a calendar on the fridge. I marked the day with red if it was miserable, blue if it was okay. It sounds very kindergarten but one rotten, miserable butt buning day would make me lose track that I just had 2 or 3 good days. I was able to see that my weeks were getting better. I had one bout of pouchitis and knew right away that something was wrong when I had three Horrible days in a row after steady improvement. My food journal was immediate proof to the doc that I needed abs. I feel for you guys, it is a tough go the first few months. My nights were lonely and I was in agony. But I feel great now. I'm sending you prayers for strength, patience and a return to good health.

Karen

Thank you Karen. How does a dr. know you have pouchitis - is there a test they run or do they just go by symptoms that you tell them?

Appreciate the prayers very much. God bless and so happy to hear you are doing well. I do the same thing with the journal and labeling days/nights either good, bad or OK. The majority of my days are "OK" right now.

yes yes, thank you all for the support and encouragement....i really do hold onto the fact that realistically, it will only get better, and its just a matter of time.

christine, that does help. are you eating until you are full? do you count calories or know a ballpark? totally fine if you dont, im just curious.

ps, as far as i understand, pouchitis almost always comes with multiple symptoms and blood to some degree, and fever and nausea...i THINK. i could be wrong....im not sure JUST high frequency, or an increase in frequency is indicative of pouchitis....again, i could be wrong....i didnt ask too much, but my surgeon alluded to this when i explained some of the things i was experiencing, and he said there would be other symptoms.

I was able to call my surgeon and talk with her. Since I had a calendar and food jounal she believed my sudden shift was probably pouchitis. Presciption was called in and I had an appointment scheduled for the next week. Immediate relief with abs (which usually happens regadless on abs). I stayed on 3 weeks and then did a slow taper. This is an important question to ask when choosing a surgeon. Ask if they will converse with you via phone and/or email. I had alot of issues with step 1, 2 and 3. I was blessed to receive the cell phone number of my surgeons attending. Usually he said "get back in here" but there were times he could call in scrips for me.

Ro - I do pretty much eat until I'm full with the exception of dinner. I eat lighter and stop eating anything after 7 so I don't run into issues at night.

Oh boy nothing is easy, is it?! I went to the surgeon Wed. he took a look w/scope and saw I had inflamed pouch. Wonderful! He put me on canasa that seemed to help right away however, after not having a period for well over a year my body has decided to reactivate, I guess! In my last stay at the hospital they saw a cyst on ovary and I have knifelike pain there, as well. Started w/migraine, nausea and major weakness all night Wed. into Thurs. Trying to turn it around today but not getting very far!
Does anyone get a lot of growling in abd. before pouch feels like it is filling up? I have alot of gas noises all the time. I do not take metamucil or immodium any more as I do have formation. Just alot of gas noises! I have surgeon stumped on that one! I have had everyone hear it when I am just sitting or laying down. I am wondering if I need gas x, now.
Roberta

JillM I had my surgery done at the Miriam Hospital in Prov., RI. I had gone to Beth Israel in 2007 for a long stay w/UC when I started the disease. I am closer to Prov., RI than Boston. I have done alot of research before having this and this is what I had read throughout the research. I knew it wasn't going to be easy but was hoping for the best!

I hope your are well!
Roberta

Roberta,

Try a digestive enzyme like Beano instead of gas x. They work differently. Gas x works on stomach gas that has already formed and Beano works to prevent the gas in the first place.

Roberta - I agree with Marianne. Try the Beano - I take it before every meal and it has helped the gas a little. I still get the pains but they don't seem to be as bad. My stomach does make a bunch of noises all the time - not sure what is going on in there. Hope you are doing better soon.

Thank you - I will definitely go out and get the beano and see how this helps me!

Roberta