Positive sucess stories

when I say limited foods I can eat, I scared to try anything bc finally my BMs are between 10-14 a day. I eat chicken, potatoes, cottage cheese, oatmeal, peanut butter and pretzel and that's it.

Keep a food diary. I found out my taboo food is mushroom soup....it still is 18 months post take down. And when I eat crab stuffed mushrooms.... I know I am going to pay for it later, but I call it making a deal with the devil.

I now substitute mushrom soup with cream if celery for my favorite recipes and I seem to do ok. I have no idea why it is the worst thing for me. I have an issue with dairy in general, but it is getting better over time. I refuse to live my life on a restricted diet, restricted limitations, restricted tongue, restricted.anything for that matter..... life should be lived to the fullest with precautions of course. Just do what you want, within moderation and figure out what limitations you can and cannot live with.

It is unfortunate that I ended up with immediate pouchitis post TD (that I suspect you have too), but once I got that squared away....life has been pretty grand to me! Most of my friends my age (40-60), have a boat load of ailments, and somehow, I think I am fairing better than they are because it is all in your attitude towards life! You can either choose to "survive" or "thrive". If my life is cut short, then I want to know that I lived it to the fullest and was able to knock a few things off my bucket list. I believe that I am succeeding in my small accomplishments and the end goal.

I am almost a year and a half out of my takedown and can't say it has been uneventful. I had 3 surgeries 1 which was emergency due to a twisted bowel that was causing me sepsis shock. I was supposed to have my two initial surgeries done laparascopic but due to the infection spreading so bad throughout my body my surgeon had to cut me open which made recovery way longer then expected. I got 2 more infections while in the hospital and ended up having 3 drains sticking out of me at one time. After I got home from being hospitalized it was a different type of struggle not only the pain I had to deal with but I was extremely anemic and the fatigue was awful I was also 140 pounds standing 6'1 which is not a good look for anyone. I struggled with anemia for several months and had to get iron infusions and B12 shots. The physical struggle was tough but I was also struggling mentally, psychologically, emotionally, and ptsd to point where I knew I needed to seek therapy. With the combination of therapy and meds I was able to get my head straight. I definitely had a lot of regrets after my surgery. I didn't think I would ever get better things got so bad for me I felt like I hit rock bottom. I also had some hiccups not too long ago that included 3 strictures that needed dilations, 2 hospitalizations for blockages, and a seton placed. But when you hit rock bottom the only direction to go is up. So I gained back some motivation and regained my positive thinking. I started doing physical therapy and was in and out of work on disability because I would go back thinking I was ready and then bow out because it was too much for me. Fast forward to today. I now weigh around 165 which is mostly muscle because I have been working out numerous times a week. I am feeling the best I have in a long time and I look better at 31 then I did in my 20s. I can do everything I want to do now. I play pool religiously, workout, drive around and visit friends, go to my sons baseball games, play football and basketball with my kids, go swimming with them, was able to go back to school for Psychology working towards my Bachelors Degree and I'm not afraid to plan things with people because I know I will be able to fulfill my promises of being there. I will actually be attending the Eminem and Rhianna concert at the Meadowlands next month which is really exciting. I do whatever I want when I want and just live life now and nothing holds me back anymore. I still have little struggles here and there but I have accepted that those will always be there it just comes with the territory. I have many goals and plans and nothing but positive thoughts for the future. I hope this helps give you a piece of mind and you will end up where you would like to be some day soon. It takes time and patience and positive thoughts to pull through but there is a light at the end of the tunnel and when you reach it you won't have any regrets anymore about anything.

Once I finally got treatment for pouchitis 5 months post takedown, life became pretty darn awesome. I had had enough of having accidents, sleepless nights, calling the surgeon to see if this or that was normal, still living in fear of going out of the house, pelvic floor pain, etc. suddenly, with cipro, I had a life again. Night and day difference. Currently 6 months post takedown.
Katie

Lesanddiego- why do you think I have pouchitis? I have no cramping, or vomiting.

Thank you everyone for sharing your positive stories.

I'm one year post op now and it's been reaaaally tough! My wound took 8 months to heal and it took about the same to diagnose me with pouchitus! I never had vommiting or anything I just went to the toilet a lot and sometimes leaked a small amount during the day so didn't make too much fuss. Eventually I mentioned that It was wearing my down and found out I had pouchitus which was the route of half my problems! Straight after those anti biotics finished I'm back with pouchitus so am on some different tablets.
From 6 months ago it's like night and day however! The first maybe 8/9 months I have to admit I didn't think anything was ever going to get better and was scared I'd made a horrendous choice! Now I can wear any clothes that I want, never have to worry about carrying a spare back incase mine breaks and I've stopped panicking about where toilets are because I know I can hold it in! Has really changed my life! I can even go swimming and not have to worry about my bag being wet and soaking my clothes!!
It's a horrendous journey but it's so worth it!!

Steph xoxo

You have excessive frequency that is not subsiding. I never vomited or had cramping either (everbodys symptoms are different apparent), but I did have watery stool (should be like porridge), intermittent low grade fever, night time leakage, and eventually... Intermittent blood.

After the blood symptom my surgeon finally did an exam and diagnosed pouchitis. After 7 days of antibiotics, life so much easier!

Lesandiego- thanks for you feedback I do appreciate it. I will discuss this with my Dr. my only concern would be that I have never had a fever, my BMs went from 20+ to now 10-14, dr. increased my Imodium and added benefiber so I have more stools that are formed than water, and I no longer have night time leakage, and have no blood in stool. Do you think it could still be pouchitis?

MAS,

BB is a sign also. I still have my loop and have had pouchitis twice. I didn't know it at first. I had bb, frequency, pain in bum and eventually low grade fever. Once I took the cipro, no bb, freq, or pain. When I don't have pouchitis most of my stool stays in my bag. But once I get it things start going out my bottom and boy does it burn. Hopefully I get my takedown in sept.

I would ask your dr if you could try the cipro to see if there is a difference. Because like everyone has said, it's a difference between night and day. Hope it his helps.

Hi, I had a colectomy and jpouch created almost three years ago 8/10/11 & takedown 10/17/11. My life has changed so much for the better. I had UC for 17 years and it was time to make the change. The first few months for me was really about learning and paying attention to my new digestion and learning what works best for me. Trial and error, pain and butt burns, constipation not constipation, heating pad/ no heating pad... The jpouch for me is way better than the pain & incontinence of UC. I have to remind myself about my old struggles of sleepless nights with UC and going to the bathroom 25-30x per day in pain & suffering. Now I go mayb 6 or so times depends on what I eat and how much and how late, I try not to eat after 8pm now. Dairy and alcohol were not always tolerated w/ jpouch yet I'd try it & get butt burns etc. Hydration is key. I recently bought a nutribullet to get more fruits & spinach in my diet. I make a smoothie w/ a little baby spinach, half banana, a few strawberries, & 1/4 cup blueberries and water and ice. I go easy on banana for some reason my jpouch doesn't like it. You will get to know your jpouch & digestion process and make necessary modifications, be patient with yourself

As I recall.... your trips to the bathroom should be reduced in half every two weeks. So, if you start out at 20, then in two weeks it should reduce to 10 and at four weeks you should be at 8 or less.

I never got below 10 trips by my 2 months post take down and developed the intermittent blood, but had the low grade fever during those two months.

I am now at 4-5 trips per day, but recently increased to 10+, suspected pouchitis, asked my doctor for an Rx of flagyl. You get almost immediate relief even after one day on an antibiotic.

I never had fever or blood either, mostly incontinence, urgency, frequent trips during the day and night. Really, within 24 hrs on cipro I was much better!
Katie

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I never had fever or blood either, mostly incontinence, urgency, frequent trips during the day and night.

Ditto with me and I now have 20 years of battling pouchitis under my belt. I never once had fever or bleeding, just the stated symptoms and some nighttime leakage. Because of my amount of experience with pouchitis I can sense when there is a downward turn and when I need to go on antibiotics immediately.

In my experience and for me, cipro and flagyl in tandem have been the most effective antibiotics (providing the broadest spectrum of coverage), but xifaxin and augmentin, which I also rotate between, are also effective. None of the antibiotics are 100% effective as my scopes show "simmering" pouchitis- so the symptoms can be controlled, but the disease has never been eliminated.

Regarding this thread seeking "positive success stories", this board is the wrong place to look. This is a support board where people come looking for assistance with specific issues, not to post that they feel wonderful. There is no "representive experience" that can be gleaned from the collective experiences posted on this board, and as a matter of logic and common sense, one has to keep that in mind. Many people I have spoken to with healthy J Pouches have never heard of this board, and the reason why is they have never needed to hear about it.

for those of you who did a round of cipro or flagyl were you also taking Imodium, benefiber or any other thicken agents?
thank you all for your input this has been so helpful.

Cipro and flagyl will thicken the stool so you may not need imodium at all while on these antibiotics or if so, very little. When I take cipro and flagyl all that I need is 1 imodium at bedtime. If you are taking cipro and flagyl and do not notice an immediate thickening of the stool within 48 hours, they may not be working.

Be very careful about taking imodium while on antibiotics which will tend to thicken the stool because they kill the bacteria that was previously causing the inflammation and the liquification of the stool. If you continue to pop imodium like candy while you take antibiotics, the result could be constipation or over-thickening which will itself cause pouchitis as your pouch cannot empty properly.

No I didn't take anything else to thicken, just the cipro. Got thicker just getting rid of the pouchitis.

Shortly after takedown, Imodium did not work. Thus the eventual diagnosis of pouchitis. After 7 days of flagyl, I had a full year of taking nothing other then one Align per day. Just recently had a second bout of pouchitis and took only 3 days of flagyl and all is back to normal... just one Align per day and my neurontin for a separate issue.

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Posts: 32 | Location: USA | Registered: July 08, 2014

I don't have a success story for you, but just wanted to let you know you are not alone. I had my takedown two and a half weeks ago and I went 25+ times yesterday. I take an immodium before bed and am usually able to sleep at least 2-3 straight hours. Today seems to be better, but I am also being extra careful with my diet. I ate spaghetti yesterday. Worst mistake ever! I wont be eating anything tomato based for a very long time. Hang in there!