hi all. I had takedown in June 2016 and have suffered with a multitude of problems since then (you may recall my previous posts)?

Basically, there is NO improvement whatsoever. I take 20mg loperamide 4 X daily, 60mg codeine 4 X daily, slippery elm, VSL#3 yet I still have incredible painful urgency, go numerous times in the evening and overnight (interestingly, things calm down somewhat during the day??) and just feel so incredibly down and desperate. My bottom is so, so sore and I'm getting to the end of my tether. My diet is restricted and I follow the fantastic diet sheet here to the letter  

My consultant is incredibly supportive however and I now have an appointment scheduled to see a specialist GI in a couple of weeks. I was prescribed Cipro for a couple of weeks as it was suspected I could have pouchitis; I must say my symptoms did improve but unfortunately as soon as the 2 week course finished I got a chest infection and went straight back to square minus 100. 

Can anyone, anywhere suggest anything I can do to at least alleviate my symptoms. What do you think could be the cause? I feel like giving up which is so defeatist as I've fought so hard but I can't deal with the pain. By giving up I mean asking for the pouch to be removed. 

As an aside, my temp ileo was notoriously difficult to manage; my output was insanely loose and I was on the same meds that I'm on now. 

I do sometimes hear my stomach making whooshing/gurgling sounds; not sure if that's relevant? And also I get incredibly painful anal cramps which make me go rushing to the toilet where explosions often erupt. 

Suppose the title of my post 'bit of a pickle' is an understatement, but I'm trying so hard to remain positive. 

Thank you for your time reading this. 

Original Post

Puffer, this sounds like pouchitis to me. If you've only had the one course of Cipro then it may simply not have been treated adequately. Sometimes several antibiotic courses, or a higher dose, or a different antibiotic is required. Sometimes antioibiotics have to simply be continued, preferably rotating among several that work for you. The chest infection is probably unrelated to the Cipro, though we can't be sure. Cipro does occasionally cause pneumonitis, which is lung inflammation *without* infection, and if that's what you had Cipro might be off the table for you.

There's no need for you to live like this. I'm on antibiotics all the  time ("antibiotic-dependent pouchitis" means the symptoms return shortly after stopping antibiotics). That's not perfect, of course, but I feel great, teach martial arts, scuba dive, and work full-time. You might not need antibiotics all the time, but you do need to get your pouchitis under good control.  Good luck!

Thank you so much For responding Scott. I do feel a little reassured now; I'm ok taking meds long term (take meds for epilepsy) and if it means that... Then so be it! As I mentioned, I'm seeing the GI shortly; I just hope they come to the same conclusion and it can be 'dealt' with medicinally. The thought of 'living' like this permanently is pretty damn depressing. 

Once again, thank you. I'll give a general update after the appt should anyone else ever have the same sort of symptoms ��

Hi Puffer, earlier this year i had intense pouchitis like you described. I consider myself an absolute ninja when it comes to diet and i have always been drug free thanks to my strict diet, but this particular time i just couldn't control it and i resorted to Cipro for three weeks.

I can definitely say that Cipro got me out of that crazy painful phase and got me back to my regular movements. After three weeks of cipro i did get crazy tendonitis so watch out for that (btw - magnesium spray heals the tendons if you need it). For a few months after the cipro i only ate rice, chicken, fish, eggs, avocado and then slowly reintroduced a few vegetables. 

There is light at the end of the tunnel, you will get through this, hang in there!

p.s. for but burn i highly recommend paw paw ointment, it heals and protects the area.

hi its helene is am always on cipro  i try to take it as soon as i feel urgency for a few days then i take 500mg 2x a day for two or three days then try to get off it when it was bad i would stay on it i hate it but i have no choice went to DrShen he recommended oxygen therapy but i couldn't do it it freaked me out small places but i also have ulcers good luck

 

First, we are just never prepared for how hard this transition is.  Hold on it gets better.

Some other things to consider:  pouchitis can be fed by bacteria:  So avoiding sugars, dairy (including yogurt) and gluten can really help. Take O'hhirra's (green box) probiotic, 2 of them 3 times a day.  Don't take this at the same time you take your antibiotics.  After you come off the anitbiotics, continue doing this for at least a week to a week an a half and then taper off to 1 or 2 a day.   Remember that Cipro can cause serious joint problems, so watch for that, they can change you to Flagyl if you need. 

Second, you need to **really** look at your stress levels.This surgery, illness and pain causes serious stress by itself and that is hard to manage because it is effectively an assault on your body. Our bodies are the canary in the coal mine and we need to listen to them. This means doing things that move your body out of fight or flight mode so it can get to the business of healing.  This will lower your inflammation levels in your body.  

This can be things like:  star gazing at night, watching sun rises and sunsets:, bee watching, drinking a favorite herbal tea on purpose, sunbathing in the morning or evening for 20 minutes, turning down all the lights, pick some favorite music that is calming  (I like Coyote Oldman and Jazz), going to the hot tub for 10-30 minutes in the evenings to unwind your body, get a feel good massage or a really good foot massage. Take a small walk with your dog or a good friend, or just by yourself to "explore what changed since yesterday" in your neighborhood. Visit a park you haven't been to that you know has a bathroom so there is no underlying anxiety that you "might not be able to take care of yourself if you really need to go".  

But most importantly, remember what you are experiencing right now is not your final destination.  Do not give up hope and think this is where you will stay. Hold grace and compassion for the difficulty your body is doing during this very difficult transition and remind it that you are in this together and that this is just truck stop on the way to somewhere else. It took me probably 7 years before things really stabilized, but they didn't start doing it until I started actively doing the steps above. Before that I was just trying to "manage my body".   I'm at 13 years now since my take down. You got this... it's going to get better! 

Some other questions to look at:  

How late are you eating and are you eating acidic foods like tomato/tomato sauce?  Alcohol? Spicy foods?  

While you are healing which will be for at least 2 years, the hardening off means that you are very very very sensitive.  But I also find that my acid output can get very acidic at times and then I have to just stop life, calm down and bland out my diet, and change my water to gatorade/propel and water. 

 

 

Wow... Firstly, thank you so much for your lovely replies, comments and advice. I really feel supported right now as you all understand how it is. 

In terms of diet, I have been very restrictive; that said, I do still have dairy and sugar! I'm going to eliminate that from my diet immediately in the hope that there is improvement. Also, I will judge how much gluten I have; probably a bit as I'm low residue again so eat white bread with peanut butter as a filler.

I did wonder why my joints were so very achy when I was on Cipro; as a rule I don't like reading side-effects but perhaps I should have! I still feel achy now but nowhere near as bad before. I also didn't realise that you could get a lung condition from them! I wonder whether it was purely coincidental but something to seriously consider if I take them again! 

Terradon: thank you for your thoughtful suggestions. You're absolutely right that stress is probably a major factor; with little to no sleep since takedown, and feeling completely crappy with zero energy, not to mention the pain and pouchitis is a recipe for disaster. I'm taking your advice to heart and will try to find some time daily to reflect and destress. I like the suggestion of a walk and you second guessed me as my immediate thought was "but what about a bathroom!" Ha ha. I'm just going to have to check before I go and stop over thinking things!

oh... And I don't eat anything acidic and am completely tee-total. I have resorted to using St Marks Solution for when I feel dehydrated; I really wish we had access to Gatorade, calmpostine (?) (for butt burn) and many other tricks you guys have like the wafers. 

Once again, I would like to thank you all for just either reading this or contributing with support and advise. I cannot tell you how much I feel better just reading it. Xx

Hi there. I have had my j pouch since April 2016.  So I am fairly new to the pouch life as well.  I found that taking 1 Ranitidine tablet in the morning really reduced the acid in my output. I also have found that if I spray 3m barrier spray on my anal area once a day that this protects my skin quite well.  I also occasionally use pure vitamin E  oil on my ailing skin.  It helps to heal it quite well.  I most recently started tak8ng omega 3 capsules and I think they are helping my ever troubled tummy.   I am hoping things will improve as time goes by.  We are newbies to this world and I have to believe it will get better and ghat this surgery was the answer. 

Hello, Pufferfish.

If you can't find Calmoseptine in drugstores, try a drugstore located inside a hospital or medical office building, especially if it is a building with lots of gastrointestinal specialists or surgeons' offices. I finally found Calmoseptine in a hospital's drugstore. They might also be willing to order it for you if you ask them. It might be on their inventory list but they do not stock it if no one needs it.

You could also try a simple diaper rash cream formulated for babies. If it's gentle and effective for a baby's bum that it is constantly wrapped with a wet urine or poopy diaper, it should work and be gentle for pouchers' skin. I use Zincofax diaper rash cream. It is light, smells like a baby cream and it heals my sore skin in a few hours. After a while I had to put aside my Calmoseptine because it burned my skin a bit, but I found it did work very well in the beginning. I am six months post takedown. Now that my skin has calmed down and got used to its new life, I get by with baby cream now and then when needed. Good luck to you. 

Hi all. Just thought I would give a brief update. Saw the GI a couple of weeks ago; she doesn't believe it is pouchitis, rather a dysfunctional pouch or possibly Irritable Pouch Syndrome?! I had a severe case of sepsis after pouch creation and the thinking is the pouch was most likely damaged. It took a while for me to brave takedown (20 months) and between that time I was constantly unwell. 

I had an MRI pouchogram last week (an experience I never EVER want to repeat again - the pain was excruciating) and the results are pending. 

There is no improvement whatsoever (thank you all so much for your fantastic advice/comfort). 

Bottomline I suppose is going back to an ileostomy; I'm not sad about it, in fact I just want to live again. 

I looked up IPS and there doesn't seem to be a lot on the condition. 1 thing that did come up was that the condition is linked with depression. That annoyed me a bit as I was absolutely fine prior to takedown and only became a down AFTER the reversal due to my current symptoms! 

The GI also suggested a possible course of Amtriptilyn (probably not spelt correctly) but as I have epilepsy and my medication contraindicates, it's a no no. I think the reason for suggesting this is something to do with neurotransmitters etc. Funnily enough, the drug is also for depression!

Ill update when I get the results. ��

Hi, Pufferfish. If pouchogram or any type of invasive / internal exam makes you nervous, anxious, and tense your muscles, it will hurt a lot. Tell them well in advance and ask if you can have a mild tranquilizer. When I have an endoscopy, I ask for a drug and they give it to me. They want you to have the test and anything helpful that will facilitate that, they will do. Sometimes they give me a tablet called Ativan to take with water 20 minutes before I get in the table. I am completely out and don't remember a thing. You could also get something mild by intravenous, depending how your doctor prefers to work. Never suffer silently. Tell them, that's what they are there for. If they aren't helpful or ignore your anxiety, move it up the food chain and ask politely to speak to a decision maker.

He he! I'm definitely going to take your advice there... especially as I've been asked to have a pouchoscopy now. I remember that before takedown and went (stupidly) drug free. Never again. 

Im hoping to get the pouchoscopy done in a couple of weeks. Could have been done sooner but as I have to travel up to London and it's my children's half term holidays coming up, I need to be around. Nowt worse than taking a 4yr old and 13yr old to the Big Smoke to spend the majority of the day at a hospital. 

Still no improvement at all sadly; I've eliminated all dairy, sugar etc from my diet now. 

Re: VSL#3; I'm meant to take 1 sachet a day. I dilute it in a lemon squash and drin it quickly, but is there any other way I can take it? Also, has anyone taken 2 sachets a day? Is there any benefit whatsoever? Would be interested to know. Thanks guys. I really hope I'll be in a position to offer my advice soon on how to deal with troublesome pouches. Xx

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