giving up at 10 weeks

I'm sorry you're having such a rough time. I wish you the best.

I am so sorry Tom,
We all have our limits and I guess that you have reached yours...I just feel terrible for you that your body refused to cooperate...Good luck with no matter what you choose but I honestly believe that 10 weeks is way too soon for most of us to give up and give in...sometimes it just takes so much longer to achieve the desired results...(and sometimes it never happens...).
You are couragous to make this choice so soon.
Sharon

i just think my battle with uc was too long and brutal. im literally bed ridden with a bruise inside my anus that wont allow me to sit for even 10 seconds. im crawling to the toilet throughout the night with never ending gas consuming explosions then sleep and cry all day still malnourished going on almost 3 solid years of nothing but white rice products and now a corn flour based cereal with only soluble fiber. insoluble makes the hell i already live ten fold and animal foods has acid flowing from my anus non stop with no let up. if this is normal recovery i dont know how you guys do it. i will be scoped soon to identify the bruised feeling inside the right half of my anus but short of a miracle i believe my course will be steady as planned. when im souly on the corn pop cereal you dont see the itis symptoms, no blood urgency frequency but how long can i last on this one food and yes ive tried other mild bland foods to no avail, brat diet out potatoes out wheat out pb out cheese out and no toppings ever not even low fat miracle whip. i truly dont know how to continue the fight but if you have constructive advice im listening. one final thought to leave you with. when i was by all accounts in complete uc remission the doctors where at a loss as to how little i could tolerate. at one point i could only eat canned spinach mixed with white rice for a solid 18 months. what the hell is so different about me that my body is slowly killing itself with nutritional starvation? its been unmerciful and without a miracle doc willing to dedicate his entire life to me i dont see how this will ever be solved. the bag wasnt great either but as you know much more tolerant of unpleasant output/gas etc...

If my skin could have handled the bag I'd have done it for sure, j pouch sucks. This coming from someone who's never had pouch issues...

It's completely your choice but please look back at your posts when you had the ostomy, you weren't happen then either. I remember a discussion we had about anxiety and how I felt it was contributing negatively to your health back then. I still think you have a lot of anxiety now, yet I know you have some real issues going on now. The entire pro less has been very hard for you and I would still encourage you to take a broad look at your health, ostomy or jpouch.

Sue

i have tried to address the anxiety many times but my digestive tract wont allow it. were on the 4th med and its killing my gut and terrible diarrhea. i cannot try another. i do agree with you however. i feel like my digestive tract is holding me hostage. i am in cognitive behavioral therapy to little avail...

Don' despair, I cannot tolerate almost anything yet either. I am 2 years out from takedown. I recommend investing the money into VSL#3 to help metabolize the sugar. Diligently taking the probiotics, truly made a difference in the way I felt. As for corn, cereal, or vegetables, if you keep eating those for "now", you will continue to have excessive bathroom trips. I could never eat any cereal without a bad result. Anytime I eat too much carbs or sugar, I am in a lot of pain. With the pain, comes terrible anxiety. I know rice is not too aggravating, but in excess it can be an irritant. I find that I am able to decrease my pain and bathroom trips with protein...lots and lots or protein. I ate plain shrimp and chicken at first. Watch out for the ham because of the sugars and added smoked flavor. And, I cannot eat processed meats...forget the deli counter...so much pain, so much diarrhea. I have advanced to eating cooked carrots in chicken broth, but that is the only vegetable so far. To date, I cannot eat any fruits. I can now tolerate Greek yogurt, plain or honey flavored, but absolutely no fruit flavored. With the yogurt, I started with half a day and progressed to two a day. I finally saw Dr. Bo Shen last month and progressed with medication. Once my cuffitis is calmed down, I believe I will be able to introduce a food one at a time, but very slowly. Don’t give up hope and I wish you the best.

faith. did you have any luck with cheeses? trying to figure out how to get calcium in my diet as the supplements and vitamins give me hell. as i said, with corn cereal i have no frequency so im different in that regard but i know i cant maintain this limited diet...

Tom,

I am so sorry you are having such a hard time. Your choice is of course your own, but my thoughts echo Sue's: you weren't happy with your ostomy either, so I urge you to think about that before you decide to go back to it. Was the ostomy so much better than this, for you to put yourself through another surgery and recovery period? 10 weeks is still very, very early in pouch recovery, and maybe you still want to give things a little more time.

That being said, if you are truly miserable and you truly feel that going back to the ostomy will improve your quality of life, then definitely go for it. If you think getting rid of the pouch will alleviate some of your anxiety, then it may also be a good thing for you. Ultimately, these are questions only you can answer, with your surgeon's advice and guidance.

Whatever you choose, I hope you find peace of mind.

Tom-I'm sorry you are having such a difficult time. I think 10 weeks may be too early to give up on the pouch but I do recommend you investigate what's going on. You shouldn't be having this much trouble either. Anxiety and depression aren't going to help your situation. You must try and stay calm-take baths, meditate, deep long breaths, listen to calming music. You are caught in a vicious cycle that you must break. It seems your diet has taken control, all foods are aggregating you. Try to revisit foods that failed you in prior months again. Stay positive and don't give up. Keep the mindset that you will control your pouch and the pouch will not control you. I know easier said done. This entire experience is really a mind over matter game. I have found that our emotional and mental well being are half the battle. I'm not sure what your day to day activity is but force yourself out and try to socialize and get your mind off the pouch.. Good luck w the scope

Talking to the surgeon who just created your jpouch 10 weeks ago, I doubt he'll be on board to revert back to an ostomy this early. Not only because it's a huge surgery and will take a lot out of you, which you've informed us you don't have to give atm. It also means he has to have a failed surgery record, which he won't want to have from you simply saying things hurt and that you have urgency/gas. You'll need to have a structurally unsound pouch, or fistula/abscesses out the a$$ (pun intended).

10 weeks out is still so very early, I took like 30 weeks before the pain/urgency/gas started to settle down. Maybe your problem is you limited your new foods so much, the one or two things you eat religiously are whats causing all your issues. Variety is what saved me, I can't even imagine limited my diet to a few things that only cause me pain and gas and not giving me any of the nutrients I need to have a fully functioning body and mind.

It's up to you though, just saying I don't think any surgeon would touch you for at least another 7-8 months, if only to get you healthy enough to even make it through surgery in one piece, jpocuch removal surgery is a gnarly one, much more difficult and lengthier than the creation surgery. By then your jpouch might have started behaving!!

Tom, I sure am sorry that things don't seem to be turning a corner for you. What troubles me more than anything is that it seems that you have had dietary intolerances that predate your j-pouch, ileostomy, even UC. To me, it sounds like you have underlying issues, like IBS or perhaps even food allergies that are compounding your problems. Granted, when you add these issues on top of chronic loose stools and hemorrhoids, it is a recipe for disaster.

What I fear is that the ileostomy will only solve the butt issues, but not the underlying food and anxiety issues. But, perhaps if you are not having to focus so much on your butt, you can address the other issues. Maybe some time with an ostomy will give your butt time to heal too. I also wish you well with the scope and perhaps will find out something useful from it.

There are no perfect solutions I am afraid, but hopefully, you can find one you can live with.

Jan

Tom,
Just a thought...leaky gut syndrom??? That is when larger then normal food molecules cross over from the stomach/guts into the blood stream and cause chronic food allergies along with all of the other problems...they say that a good run on probiotics can go a long way to help that...I have severe food allergies that have moved from bloating and gas to hives and finally to full blown allergic reactions that land me in ER...according to the allergist they are all the same allergy just at different phases of the manifestation...she thought about leaky gut which would explain why the allergies were so erratic and varried...no 1 food group but just about anything (wine, green beans, eggs, milk, cookies...it was all over the place to the point where I was afraid to eat and the cortisone wasn't helping me)...She sort of had me reset my system with a full out fast for 24-48 hrs and then slowly re-introduce foods into my system starting with chicken...(less acidy than beef) and then a fruit...then another protien (I ate chicken, fish, green beans and grapes for quite a while but it worked in the long run...I just had to introduce things very, very slowly)...it is just a thought...The other thought is for them to put you directly on to TPN for a week to settle your whole system down for a while and give you some strength and energy so that you can handle whatever is to come...hang in there we are all hoping for a better outcome for you.
Sharon

i think im caught in a vicious cycle but non of my docs have ever taken my concerns too serious regarding food intolerance. one time years ago i had the pin test on my back and once had a wheat blood test. all negative. like its the last word. i have been labelled ibs before but nothing ever offered. maybe you guys could save me. im desperate...

I do get a lot of gas with cheese. I buy a brand that is lactose free, but still get the gas. How I try to control the gas is to eat 3-4 oz every 4-5 hours. Usually, I'll do this about twice a day. I forced myself to get used to the Greek yogurt because of the calcium, potassium, and protein.

I was reading the previous posts and one mentioned TPN. It wasn't until I finally decided to go this route things started to improve for me. I was down to 98 pounds and 125 is a skinny weight for me. I pulled the line after 10 weeks for my own reasons. However, I gained 25 pounds and felt like I had an immune system again. The pain and anxiety reduced, which allowed me to introduce foods very slowly. I highly recommend TPN. This enabled me to calm down and feel vibrant.

Tom,

I don't know that we can save you, though I think we all wish we could give you a magic bullet. Believe me - I remember how hellacious post-takedown was for me. And it went on for months and months. I can relate to the constant gas, the 20-30 trips to the bathroom, the butt burn, and the fact that nothing seemed to help. I was at a loss and no one gave me forewarning things could turn out like that. And advice from fellow j-pouchers was consistent - "time."

That was the absolute last thing I wanted to hear. Intellectually I understood that - but the rest of me mourned the idea that time would heal things. I tried lots - gas x, fiber, etc. and nothing much worked. The first thing to show any promise of change was probiotics. Fiber and immodium were useless. I'm not sure what goes on in our bodies to create such havoc post-TD, but I theorized it was simply the need for healing or balance in my gut.

I would encourage you to please stay the course. My life is completely different now. I was to the point of depression but am far from that now.

And what about bowel slowers? Do any of the usual work at all for you? If not, would your doctors consider codeine or tincture of opium to slow things down?

Those are just some other things to try. This may or may not be food related - it may simply be the pain of "adjusting" to a j-pouch. For some of us that adjustment period is short, while for others of us it can last up to a year (I know you don't want to hear that).

Let us know how it goes.

Steve

i think part or all of my problem is a perianal abscess that has been hurting badly since takedown or even before. i get scoped tuesday and hope they find whats wrong and can give me relief. fighting this thing is hard enough without complications. funny at my 6 week follow up my new surgeon never even look at my butt til a week or so later when i had a thrombosed hemorrhoid which was hiding this new small hard lump right at the anus/sphincter so i lost a good 5 weeks of potential diagnosis. to be fair i thought the pain was normal recovery but im now realizing this lump has been my problem. i did get scoped before takedown while having this pain and my original surgeon saw or said nothing. could it be something other than an abscess? can an abscess go untreated since j-pouch creation 4.5 months ago cause thats when i first noticed it. im very scared now reading about them and all the potential problems they can cause especially untreated ones. (incontinence) i deserve so much better...

Are you taking a probiotic? They saved my pouch. Somewhere in the long list of general discussions is a post with my probiotic story.

If you have not tried them, please do before you make any final decisions.

My first year was rough, if I remember correctly. The second year was good. Then everything started messing up.

I was on the bed getting ready to revert to a permanent ostomy and my surgeon suggested adding probiotics to my pills. I gave it a month....then another one....then another one...

That was 8-10 years ago. I still have my pouch.

Maybe worth a try?

Either way...it's such a personal decision. And as someone said, ten weeks is really early in the game.

A perianal abscess takes time to mature and become "diagnosable" and since you have had other overlapping issues, I do not see that this was an oversight or foreseeable. I would not be surprised if this developed just recently, even though you have had pain for a while. I would suspect it was the hemorrhoid that was brewing first.

Jan

thanks jan. does that mean i may have caught it early and have a good chance at an easy recovery?

Sure, why not? You've already had the difficult recovery, so anything else should be a breeze.

Actually, I really don't know, but I don't think it is at the point you should assume that this has gone to the brink and it is time to panic. I had a HUGE presacral abscess that landed me in the hospital with a 105 fever, but 4-6 weeks later, I was much better and back to being president of the PTA and volunteering daily in my kids' classes.

My advice: hope for the best, assume it will go well, because you cannot control it and obsessing about worst case scenario will just make you crazy.

Jan

i have a scoping tuesday so ill know something soon

Tom-

Please pester and hassle all your doctors (GI, surgeon, psychologist/psychiatrist) until they do something to help you!! Make SURE they know exactly how serious things are right now for you. If they don't or aren't helping, I would switch doctors until you find one that takes you seriously and is really proactive in getting you more comfortable. You shouldn't have to put up with all that for this long.

In the meantime, have you thought about trying medical marijuana? I know it is controversial, but it may be able to help both your physical and mental/emotional issues. Aside from just helping with the depression and pain, medical studies have shown that it actually interacts with receptors on the intestinal tract to regulate and relax things, reduce inflammation, build new healthy mucosal lining, and slow the dumping process from the stomach to small intestine. (If you want to see the studies, email me and I will send you a list.) Plus, it helps treat/reduce stress big time, which is a killer for GI issues.

If you don't like/want the feeling of being stoned or smoking it, there is a glycerine tincture that comes in a bottle - you just squeeze a dropperful under your tongue and hold it there for about thirty seconds (tastes sweet, like a melted honey consistency). It does not make you feel stoned in any way - you keep a totally clear head - but it relaxes you and still gives you the medicinal benefits.

I'm not one who recommends that treatment for just anything, but honestly it might help you get through this rough period. I understand the feeling of not being able to take any more, but I really hope you don't give up quite yet since ten weeks is still so early in the process. I get it, though. If I was at that point after I was supposed to have to return to work, I have to admit I would be considering it as well, but I think there are still things you could try and that you should demand action from your docs until you are at an acceptable place.

thanks boot. i have marinol http://www.drugs.com/pro/marinol.html in my fridge right now. they are thc capsules which is the active ingredient in marijuana. i wonder if they would serve the same purpose. i dont mind being stoned in fact i rather enjoy it. i tried them prior to my surgeries but failed remission to quickly after starting them to really evaluate them...

Bootstrap,

Could you recommend a trusted website to order glycerine tincture?

Chasingtime

I would really urge you to think a little longer. After my surgery I was very very ill and couldn't tolerate anything.

I suffered with terrible BM's, with itching and BB and my life was hell. I could have slit my wrists there and then.

The only reason I didn't go to the bag was the fact i'd had all in one surgery and hadn't had the bag so was dead against it.

Finally on week 17 things drastically improved. It was as if the pouch had suddenly woken up and learnt how to function.

The feeling of needing to go all the time and stomach churns and BB and itching all went away almost overnight and I have been in love with my pouch ever since apart from a couple of issues.

If I had geven up at week 10 and I could have done easily then I wouldn't have the great pouch I have now.

I have severe cronhs with abcesses and fistulae but it wouldn't make me go to the bag. These pouches work, they just need to learn how.

Hi Tom,

I am so sorry you have to suffer so much. Like most people said, it may be too early to make that decision.

The problem with diet or to recommend a diet is not the same for everybody. For instance, I cannot have any milk products such as whole, skim, fat free even Lactaid. No cheese except parm grated cheese and I am on a low residue diet. Fiber would cause me severe cramps so anything high in fiber is a no no for me. In the beginning, I turned to Soy Products but they caused me to have Kidney Stones.

So now I use Rice Milk. There are many products out there that are milk free and gluteen free. Again, everyone reacts differently. Corn products are also off my list.

When I get pouchitis, I eat mostly soups. Something about the warm liquids seems to help me.

I wish you the best in what ever decision you make.

Rocket

Some things to consider that have served me well over ten generally good years with a J-Pouch:
1) Metamucil (or other psyllium fiber) with food. This is *soluble* fiber, which behaves quite differently from the insoluble fiber in raw veggies. Use the smooth powder or the biscuits, not the capsules. This doesn't work for everyone, but it helps me, serving as a kind of glue.
2) VSL #3 DS. I take 4 packets/day, in greek yogurt.
3) I try to eat nothing after about 8 PM.
4) I take lomotil at bedtime.

Abscesses are tough, and have to be taken very seriously.

Not having a bag opened up a world of possibilities for me, once I started feeling better. I was able to study a serious martial art (Japanese ju-jitsu) with my daughter, and we worked together to earn black belts. That would have been just about impossible with a bag, and I had no idea that was in my future when I had the surgery.

It's been 10 years for me as well and it was a very slow process. Things that work well today, may not work well tomorrow. I absolutely cannot have anything with insoluable fiber in it. The only fruit I can eat is cantaloupe and for vegetables, just green beans. I feel my best when I eat proteins and starches. I love cheddar cheese, whereas some people can't eat it. When my BM get too watery, I eat mashed potatoes or cheese. And some items I can eat one day but if I eat it again the next day, it kills me. Like my body is okay with it once, but doesn't want me to overdo it. You start to make a chart in your head over the years of what to eat, what not to eat, what to eat in moderation, etc. It gets easier. I could never go back to the bag. For the 3 months I had one prior to TD surgery it was pure hell. They constantly leaked and tore my skin up plus the pain of always having the supplies. I would bet that anyone here would tell you the first year was the roughest and it was for me too. After that, it got easier and easier. Wish you the best with whatever decision you make.

before i got colitis i was a clean freak using baby wipes after bms etc. this life is just so depressing to me. im not saying the bag was great but these multiple 30 to 60 minute am bathroom visits are absolutely killing me. i have zero testosterone in me so my mood and well being are in the toilet. with the bag i though my foods were limited but compared to this it was a smorgasbord. finally shrinking a nasty painful hemorrhoid only to find a hard lump waiting under it that may be an abscess is just too much for my exhausted mind to handle. i hope i get good news after tuesdays scope but the anxiety is eating me up. ive had problems for 20 plus years and every additional minute of discomfort is taking its toll. im 52 male 115 lbs down from 135 after first surgery and down from 155 pre uc. prior to first surgery i was 97 lbs and could barely walk. we left our family and friends to try and survive this disease in the milder climate of southern florida only to realize i was too far gone. now alone in a strange place after selling our home and leaving all our children i faced 3 surgeries in 5 months had a nervous breakdown begging to come home to ny then packed again drove home 2 weeks after takedown leaving a handful of new friends we fell in love with bought a home and moved back to rochester. can you say stressed? just a bit. i know im not alone in the whoa is me stories but im me and apparently im an extra sensitive guy who thought he was tough as nails. this disease has chewed me up and spit me out. i truly cant take anymore but i read day after day how even the lucky ones eventually go down to either an itis a fistula and abscess etc. im having a hard time seeing the light at the end of the tunnel. thanks for listening and i really appreciate you guys. oh yeah, i was so wishing after takedown i could sleep on my stomach. nope it gets me running to the can and OH MY LORD THE GAS!!! just doesnt seem like a good alternative to a difficult run with colitis but i swear to you for me this is harder. i lived on spinach and rice and no meds which kept me blood free but i clearly could not go on losing weight and eating only spinach and rice however, that being said i only went around 5 times between 9pm and 2am and i could sleep however i chose and i could go out from morning to 9pm no prob. so the contrast for me is hard to cheer about at this point. oh yeah and with the way i managed my colitis i had zero gas.

I know there is little I can say to help you focus on what is positive, instead of the negative, but I will try.

97 pounds? Really? And that was better? Yes, I see you initially gained weight and are losing it again. Maybe an ileostomy would help you regain your weight, and your positive outlook, but you need to muster up your patience until you see your surgeon next and find out what is going on. Of course I have no way of knowing, but I would imagine that things were absolutely terrible or you would not have moved south, then had surgery. I think we tend to remember the good stuff from the past when we are going through particularly difficult times.

That is why I stress focusing on the good things, like having a wife and family who love you. If reading about other people's problems is causing you even more reason to obsess about a future you cannot predict, it may be a good idea to spend less time on the internet in general, and here in particular.

I am not implying that we do not want to hear about it, far from it. I am saying that sometimes you just need to pull back, regroup, and take stock of yourself. I've done it and many others here have done it. Sometimes, we just need to shut off all the input so we can think clearly. I know you want to believe that you have a healthy pouch in your future, but it seems you keep circling the drain without relief. I sense your frustration that what seemed to be useful tips for other people does nothing to help your situation, and that maybe you feel that means your pouch is doomed.

I just do not believe that is true. If I had a dollar for every person who said their pouch was never going to adapt and wanted their ileostomy back, I would be quite wealthy. Typically, those same people come back later saying how great things are and they were glad they stuck with it. Only a very few go straight into failure and wind up scrapping the pouch. There is no reason to believe that you are not in the majority. Most of us here had significant complications and are OK now.

So give your wife a squeeze and muddle through until Tuesday when you get to hear the next bit of news.

Good luck!

Jan

i just want to say that the pain i am feeling on the side of my anus from what i believe to be the new found bump has been there since j-pouch creation however after creation it subsided til takedown and that pain has not let up since so i kept thinking its normal post op pain but its becoming clear to me ive never been able to feel good with my pouch from day one. gas will send me through the roof and sitting causes a gnawing ache that wont let up. no wonder i hate my pouch. please pray they find the problem and solution tuesday so i can begin to feel miserable instead of like im dying minute by hour by day and so on...

Don't be kicking yourself for not knowing what this was. I sat on my presacral abscess for a month, I had the pain and low grade fever all along, but the symptoms were too vague for my surgeon to really nail it down. Plus, I also had a deep vein thrombosis in my leg, a bowel obstruction, and a wound infection going on. It was not until the 105 fever that they could diagnose it. I went years with my cuffitis before realizing it was not just "normal pouch behavior." And, I am a registered nurse!!

This is something nobody has any experience in until we are there, and no two cases are identical. Eventually, most of us run out of things to go wrong, and things start looking up again.

Jan

FaithnWill wrote:

quote:

Could you recommend a trusted website to order glycerine tincture?

Sorry I didn't see this question sooner... but here is my answer: Because it is only legal in certain states, I don't know of a website that sells it. I have a medical card and get it from a collective (dispensary) one town over. If you live in an area where it is not legal, it may be difficult to get a hold of. If this is the case, email me and maybe we can brainstorm.

(Email is on my profile.)

I have always said our rear ends get the brunt of this j-pouch life!! Hang in there!

Hi Tom,

Here's my 2 cent's worth...All of the seeking and searching will drive you crazy and make your symptoms worse. I will agree with Jan 100% that you need to end the vicious cycle. I got beat up once for saying this but I will say it again...Please give your body permission to heal. Your own body is wiser than any person alive. Listen to it! Please try to think positively and find something to be grateful for. Try to get a handle on your anxiety because it will always hold you hostage. Believe that you will adapt to your pouch. Get out in nature because nature always finds a way to adapt no matter what. There are millions of examples of people overcoming adversity. It all starts in the mind! Immerse yourself in positive things. I am living proof that this works and I don't give a rip what people say or think. I am here to help others with my experience whether they choose to accept it or not. I know you can get through this and I will hold you in my thoughts until you get past this. That is the most I can do and I will! Thank you for your honesty and courage. It is a very important part of healing!

Rich