Surely just let me die

Lee, if you are looking for help relating to your J pouch, this is a good place to be.  Many of us have been through difficult times with our pouches and have received suggestions from group members.  A good starting point would be to tell us what problems you are having with your pouch and I know some group members will respond.   If your distress is primarily psychological in nature, there are other groups that can better assist you.  I do hope that you can find happiness and a way to enjoy life.

What other groups help for psychological things ? I have those issues but it's mostly because of the diseases Im plagued by. I'm not accustomed to this environment I'm afraid so I'm likely going to do it all wrong. In a nutshell, if I eat food, il sit on the toilet for hours day and night, and it'll be painful enough that il scream. It burns so fierce and il be bleeding. I eat once a day as little as I can. I have a dietitian and following her plan. But it doesn't matter what I eat, the result is the same. I don't sleep. There's always pain.

There are many of us on this site that have gone through what your experiencing in one way or another. We are all here willing to help. Let’s try to help one issue at a time. You say your in pain, where is the pain?

If your experiencing  so much pain………something’s wrong ! I’d find another doctor.

Hi Lee,

Welcome! We are here to help you and would love to do so.

I agree with BillV and YT’s sentiments. I have also been  where you are today with the exact same feelings.

Would it be possible for you to give us some more information about your case and history?

I could ask a lot of questions and make a lot of general statements but I do not think that would be helpful, so if you could put some of your issues in context for us, I am very certain that our collective experiences will be of help.

I hope you are able to obtain the relief you are seeking.

eric

Lee… I was the same…. How on earth was I to ever go back to work….. well, after my recovery I was able to and still working for over a year now. I am a plumber by trade. I am able to eat almost anything. IT WILL GET BETTER….much better. You just need to give your body some time to heal. Get past the feeling of passing broken glass and molten lava. Unfortunately the only thing that helped me was time (15 months to return to work) the changes were very slow for me but in time my life rocks…listen to what this site has to offer ask questions these people really have gone through what you are experiencing and can really help you in your recovery…I wish you the best Lee we are here for you…….remember….your colon removed stomach bile from your waste and now is gone. It takes time for your pouch to learn how to be a colon.  Consuming pumpkin as well as adding some lemon juice in water helped with the butt burn. I also used sensitive baby wipes and calmoseptine after every trip to the bathroom.

Please know, death is never the answer. I private messaged you to try to help. Never commit suicide, I would just continue to pray. Do not let anything break you

Hi Lee, it seems to me that if your GI issues would improve, your depression and feelings of hopelessness woud improve, too. Like others have said, it would be good to hear more about your history. If you are new to J-pouching, it will take some time to really heal and figure out how to work with your J-pouch. If you are early on, the foods that are causing you distress now may not do it in the future. I remember eating cooked tomatoes (puttanesca sauce) post J-pouch early on and it really sent me to the toilet with distress. Now I can eat them.  For starters, I would recommend:

(1) Getting a bidet--you can install a cold water one for $50-100; (2) using an ointment on your anus everytime after you poop (I have used Calmoseptine and now use Medline Remedy Olivamine Calazime Skin Protectant Paste Cream. ; (3) avoid over-drinking carbonated beverages for some time (4) chew your food really well; (5) consider a low-FODMAP diet  to calm your intestines down---https://my.clevelandclinic.org/health/treatments/22466-low-fodmap-diet; (6) use a heating pad on your belly and rest when you are having a rough time. Be good to yourself; (7) if you are gassy, try some abdominal massage. Don't be afraid to dig in there. You may have some food that is having trouble getting around your scar tissue. (8) taking imodium, pepto bismol, or other aids that can slow down your digestion (9) using psyillium husk fiber to thicken up your stool.

These are tips that I think experienced J-pouchers use to help themselves. I am sorry if you have tried many of these already and they have not worked. We need to know more in order to help you on the J-pouch side of things!

Sorry I wasn't sure I was going to come back to this. Not a good day. Il try to give a basic rundown of what happened to now. 6+ years ago my son was born. The night we got him home I pooped until the sun came up. Wifey had high blood pressure so we were on a whole wheat diet. I had celiac. Some months later was diagnosed. But I had uc as well, but they couldn't find it for some months more. Then came arthritis. I got hammered relentlessly for 6 years until they took my colon out in a 3 stage. 2+ mo ths ago had the reversal. Haven't been good for years now and not sure I got any fight left in me. Still bleed when I poop, and it burns something fierce. On low fodmap since hospital and everything else you can try to my knowledge over the years. Just can't handle anything. Got a dietitian who's stumped. Surgeon won't talk to me. My g.i has seen me once in the past 2 years. What more can I tell you that's helpful?

I have insomnia. I can go 5 days without sleep. I might be insane ?

Never sleeping makes a person feel insane for sure on top of feeling lousy, and never sleeping makes it harder to heal.  That in itself sucks really hard, then all the pain on top of that.  So awful.  I have found recently that organic psyllium husk powder helps in slowing down the guts.  It might give your guts a little time to rest, and also your mind.  Also its very gentle and soothing.  If you try it, please start with a small amount.  Dieticians can only estimate what might be good for the body at any given point, but really, the expert is the person's own gut.  The problem with that is we have to find out by experience.  I recommend "Listen to Your Gut" by Jini Patel.  It was recommended to me by someone on this site, and it is super informative and empowering.  In the mean time, aloe juice or gel can help soothe the guts (again try a small amount).  Ginger and Turmeric can be great for joint pain and general aches.  And practically every J-poucher takes probiotics in some form.  As with everything, start with a small amount and see if it works for you because your body and your gut flora will respond differently than mine, and it will respond differently from itself at different times.  Once you get balanced out more, you will be able to handle more.  It can get better.  It's awful to feel sick all the time and to never even have a break through sleep. I have been there and I wanted to die, too. 

Some people on this site have had a lot of luck with antibiotics to manage the pouch problems.  Have you tried anything like that?  I wouldn't be one to speak to that, but plenty of others can offer insight on what has worked for them, and you may be able to get your GP to write you a prescription if you have the name of something from those with that type of experience.

Also, I hate how you got this major J-pouch surgery and then just got abandoned by the medical profession.  Or at least that is what it sounds like.  That seems unethical to me and I feel like lots of people get this J-pouch surgery and then are just out on their ass.  I sought medical advice afterwards, but nothing they gave me ever helped and in fact, most of the time, it made symptoms worse and whatever freaky pharmaceutical they gave me had all these crazy, unhealthy side-effects, so I stopped asking them because they didn't know anything. 

Thank you all of you for kindness

@Lee-squire posted:

Sorry I wasn't sure I was going to come back to this. Not a good day. Il try to give a basic rundown of what happened to now. 6+ years ago my son was born. The night we got him home I pooped until the sun came up. Wifey had high blood pressure so we were on a whole wheat diet. I had celiac. Some months later was diagnosed. But I had uc as well, but they couldn't find it for some months more. Then came arthritis. I got hammered relentlessly for 6 years until they took my colon out in a 3 stage. 2+ mo ths ago had the reversal. Haven't been good for years now and not sure I got any fight left in me. Still bleed when I poop, and it burns something fierce. On low fodmap since hospital and everything else you can try to my knowledge over the years. Just can't handle anything. Got a dietitian who's stumped. Surgeon won't talk to me. My g.i has seen me once in the past 2 years. What more can I tell you that's helpful?

Do you live in the U.S.?
Bleeding when you go to the bathroom doesn’t sound good, you should not have bleeding. Not being able to speak to your doctor is definitely not a good sign, you need to find the right doctor, someone that specializes in the jpouch. If you live in the US we can certainly help you find one.
A fodmap diet works when trying to figure out what you can handle, it doesn’t sound like it’s working for you.  The doc always put me on the BRAT diet/ old school, until things settled down, Bananas, Rice, Applesauce & Tea. Rice is a good bulking agent, it seems like you need something to bulk your stool up. Quinoa also helps, gentle on the stomach, and provides protein & vitamins.
I would suggest some type baby rash ointment for your bottom, Im sure it’s very raw down there. You need to keep it on all the time for it to heal, not just when you go to the bathroom. I use Triple Paste, it’s a little expensive but works fantastic. Do not use Desitin it burns.
We are here to help you, it may take a while but it will get better.

Hi lee,

thanks for providing some background info for us. I think it’s a good starting point.

I am not surprised that your surgeon has checked out. Beyond the initial first several months post surgery, my surgeon has no participation related to my ongoing care.

my GI has been with me for almost 6 years and coordinates all of my care related to IBD and my UC and now my jpouch.

have you had a pouchoscopy? If not,  aligned yourself with a GI who is experienced in pouches. You need to know if you are dealing with mechanical and/or functional issues.

The bleeding is concerning to me, and I would want to know why.  There are a number one of things that could be causing your problems, but you need to know if your pouch is mechanically sound and this can only be accomplished via a physical exam.  And while they are in there they can also evaluate you for pouchititis and cuffititis.

Hi Lee,

The intense burning when you poop makes me think you have a fissure in or near your anus. I just had a friend go through this. The cure was, believe it or not, an injection of botox in her anus (she was under anesthesia for the procedure). It was very helpful to her. I think what others have said to help with your other issues--the need to slow down your digestion and what might help, and most importantly, the need for you to find someone who will pay attention to you and really understand your medical issues---is fantastic advice.  I think what you can do now while working on finding the right practitioner for you is focus on slowing down digestion (there are lots of natural and medical ways to try), addressing your pain (tylenol or advil?); and curbing your diet way back (sounds like the BRAT diet may be the way to go for right now for more immediate relief).  Having been on this site for a while now, I know that we each have to find our way with managing the J-pouches. It helps to read what other people have done that has helped them.  Then you have to try them and see if they work for you.

I really hope you get some relief. As someone commented, the lack of sleeping alone really compounds the issue. Lack of sleep affects your entire outlook and really messes with your mind!

Try some of these things, while finding an expert who can really address your issues and let us know how you are!

How do we go about finding this practioner/expert ? I've bounced around gi's and been all over my city. I've been told by multiple medical types that it's just ' not a good time ' to have problems. The staff is slammed by covid and I can't get hold of my doctor's for months at a time. They never contact me to see how it is going. I tried to go to a chronic pain clinic to find ways to cope, but there's a 16 month wait list. I went to the only sleep clinic in Calgary, and they told me they can't help me after weeks of trying. I'm finding it a bit of a wall to even find help.

Lee, if you are in Canada, I know next to nothing regarding how to navigate their health care system, sorry.

would you be willing to travel down to the lower 48 to find care? There are some fantastic providers in New York City that could be of help. Of course if you are Canadian, you would be out of pocket.

Ugh.  Internet might help in finding a specialist.  Word of mouth----Anyone else in this group from Calgary?  I have seen people post those kinds of topics on this group before-you might find someone in your area.

In the mean time, I would keep reading observations and musings from people in this group and go with suggestions you seem drawn to.  If it's pharmaceuticals like antibiotics, then make an appointment with a non-specialist, family doctor-type and then just tell them what you want them to do after you have gotten help from this group.  I have found most doctors are open to getting me whatever pharmaceuticals I need within reason. 

Here are my best OTC dietary supplemental ideas (ease into these):

• Organic psyllium powder with water - follow directions for this. 
• Electrolytes (love the saltstick lozenges
• L-Glutamine powder (helps rebuild intestinal tissue-takes a while to take effect)
• Probiotics (especially Visbiome)
• Zinc can also help with general healing, aloe too.

Topically (for the butt)

• Non-alcohol based plain witch hazel
• Handheld bidet (so you can control the water pressure depending on how you're feeling and aim where you need it)
• Fissure oil from "Forces of Nature" (https://www.amazon.com/gp/prod...le?ie=UTF8&psc=1)
• Aloe gel fresh from a plant

Mechanical

• Try different seated positions while pooping so you don't have to push with your internal muscles. 
• Wait and just mindfully allow the anal sphincter to relax. 
• Massage your guts to help get everything out.  I push in and down right below my belly button to trap what's in my pouch and then just hold the pressure until the fecal matter and gas move down and out out of me.  Sometimes I have to use internal muscles a little right at the end, but this keeps the straining to a minimum.  I do that a few times until the pouch is as empty as possible and then I don't have to visit the toilet as often.

If you're having a lot of pain right at the anal opening, and fresh, red blood, it could be a fissure or a really bad hemorrhoid.  Sometimes that kind of pain is there all the time, just worse right after we go, and we get fearful of pooping because the pain is debilitating right after.  For that, fresh aloe has been my best helper in healing along with the psyllium to make good soft poops that have a mucous-like external layer (doesn't make your guts and anus raw-actually coats and soothes) and the mechanical things I mentioned.  I have even used the sunburn kind of aloe gel (go for organic if you have to do that) but that mixture stings somewhat: it's not best for that kind of tissue but will do in a pinch.

These things have worked for me and I didn't have to get them from the MD.  It gets expensive but it's much better than being in pain. 

I'm actually English and moved to Canada where my wife is from. Not that it makes any difference to this. But sadly no, I'm in diet straights financially as I've not been able to work for some time because of what's happened. I wasnt eligible for government benefits as I could not work. Fucked up how that works. I've applied for something that may help but it takes minimum 6 months to process. In the meantime I've accumulated debt just trying to get by. So anything that costs I just can't see a way

Maybe we need to set up a "Go Fund Me" for you?

It's just another way that feels like there's no place for me in this world. There's nothing I know of ( looked extensively) that is set up to aid people in this situation. I want to work and pay my way and be a part of society. I just can't. I've tried my hardest and made myself quite unwell doing so. I don't know where to turn with it in any direction

Your illness can be managed, but you definitely need resources.  It sounds like you have applied for disability?  I don't know how things in Canada work, but there has to be someone whose job it is to help manage the system.  Maybe your wife can help you find this person.

I could just scream and rant about how I hate socialized medicine, but it is just not appropriate for me to do so on this forum.

Lee, I spent the first 6 months of my jpouch existence with fire shooting out of butt.

The combination of three things eliminated my issues

1. I eliminated all extended release medications and supplements I was on.

2. I take Imodium three times daily, breakfast, dinner, bedtime.  This slows down your transit times and allows the stool to become less caustic.

3. When I spasm I take a drug called Levsin under my tongue that stops everything for several hours and gives me relief.

4. Don’t overdose these drugs as it can lead to constipation.

I hope this plus Sara Marie’s suggestions will be of help to you.  This is just a starting point, so one day at a time and let’s all try to get you fixed up.

I must add my 2 cents.  I agree mostly with everyone.  We all had to come to our own routine with meds, vitamins, exercise.  I totally relate with you about Living somedays.  I have journals from back when I had my 3 surgeries in 2013.  Somedays I didn't think I could go on.  I have had those moments a lot.  This is a tough disease no doubt.  I still only take it day by day and so thankful when it's a good day.  After tweaking and tweaking my diet and chg. of meds as needed I get through.  This is life long process and changes for the good and bad, our hope is we start to have more good days.  U are just starting on the journey, it will get better.

  Don't give up and I know u feel like it sometimes.  Tomorrow is another day and could be a good one so don't waste it.  Find your solace.  This format is a life saver and I am very thankful for all the tips I have learned when the ds' gave up.  Important things that I think are key to success a bidet, A&D ointment, probiotics, Psyllium husk and Loperamide.  Also, I take valium as needed and have been on Celexa.   The vitamins for digestive like, olive leaf, Organic digest and Prilosec.  These are my everyday go twos.  The diet really is 1st because if u had UC, SIOB, Gerd, gluten sensitive and lactose intolerant  you have to change it or suffer.  It does sound overwhelming but I am hear as living proof it gets better.  I choose not to suffer more than I have too.  God Bless and know we are here for you.     

TF,

Bravo

👏👏👏👏👏👏👏👏👏👏👏👏

I've made a list of every suggestion and what you've all told me you use to help. I plan to try and gather these things and hope to make a difference. I finally got in touch with the doctors, though I only managed this because my therapist went to the hospital and made some noise for me. Was up all night again and not feeling good. Simply cannot handle food. But I'm booked in for some scans on Thursday and bloodwork today. I hope that they find a way to help what's happening. I will let you know if anything comes of it. Thank you all again for your kindness and advice.

I'm not sure how I feel about moving forward yet. I bounce back and forth about trying and simply giving up. To feel like this is the beginning of my road is frankly deeply depressing, as it's been years of misery to get to the start line. I think if I could string a few good days together it would help.

I will try my best to make ground with what you've all given me. But it's always on my mind to stop my life and have it be over. I just can't seem to get away from that thought. I am sorry to appear such a whiney complainer, and I certainly don't think I'm the most troubled person on the room. I used to be a happy go lucky upbeat person full of happiness. I'm angry at myself for things I think and say. I hate feeling this way.

I really am grateful for your kindness

Lee don't b mad at u.  My GI once told me it's ur colitis talking when I would talk negative and angry.  We are pulling for you, don't give up!

Updates would be great!  Hopefully you can find a way to re-find that happy-go-lucky self that still is inside you somewhere.  Anger and depression are all a part of the grieving process, and all of us had a part of us removed.  Can't we grieve our dead colons?  I have always had a part of me that is furious with myself for being sick, weak, malfunctioning, etc.  One thing that I forget is that this is not my fault.  Sometimes it feels better to blame ourselves because if it's our fault at least that implies we have some control.  We don't and it's maddening.  But we can help ourselves heal.  Maybe try to just to treat yourself with extreme gentleness and care, like you would treat a sick friend.  I'm sure you've heard this all before...I'm saying it now because revisiting these ideas helps me when I'm feeling like total shit. 

Lee, i have been trying to find you a few names of GI's in Calgary that are familiar with jpouches that may be able to help. These are the names I have been told .

GI... Dr Shane Devlin and Dr Remo Panaccione in FootHills? not sure where that is by you..

Surgeons... Dr Daryl Jenken and Dr Neel Datta 

you could try them and see if they can help you

It's hard at the 2 month stage but I dont remember bleeding.I was using a travel bidet,calmoseptine and a hairdryer after each bm,changing my undies 3 times aday and shitting my pants at night.Its hard  what you are going through.Im nearly 2 years out from takedown and I work and go to the gym .I use the toilet normally now .I eat pretty bland food  ,take a probiotic,vit c,loperamide.It does get better but it's like being a baby again at the start.hope this helps,my uncle had the jpouch surgery before the internet so he had no advice about the timeframes of recovery and so asked for the jpouch to be removed after a short time as he couldn't stand the pain.I think if he had a forum like this he would  have persisted longer.

Dear Lee-Squire, I've held off writing but now feel compelled.  You may have this burning for a month or so more so you must find something to help relieve the pain.  IT WILL GET BETTER, I swear/promise.  I am on my pouch for 16 years now.

1.  You MUST get a bidet or hand held shower to use immediately after going.  It will make the greatest difference in your pain and your outlook.  Until the small intestines start working like a colon, the stomach bile burns like the dickens !!  I was often in the shower every time I went during the night, 1am, 2am, 3am etc.

2.  Get a sitz bath at a pharmacy at about $10.  I never used the water attachment but sat in it with very warm water after going and every couple hours for pain.  It helps with cleaning the area and for hemorrhoids, a fissure, or just raw skin.   Until my recent (3 months) bidet purchase, I had a squirt bottle at the toilet and also wet the toilet paper to wipe. Amazon carries a great and reasonable bidet you can install.

3. BRAT diet helps, bananas, rice, apples/applesauce, and tea.  Peppermint tea to calm the stomach acid and chamomile tea to help you sleep (double work).  I had to reduce sugar but it made the burn worse and this includes soda/pop.  Bagels, crackers, even pretzels make a big difference. 

4.  Put paper & pencil near toliet for you to keep track of BMs and what you ate.  I dated the entry, line 1 was the time of BMs, line 2 breakfast food, line3 lunch, line 4 dinner, 5 snacks.  After a couple of weeks patterns may be obvious.  I became lactose intolerant and I used to have milk with every meal.  I cannot tolerate paprika any more.  I can't eat my loved Doritos.  You will find your weaknesses and they will make you stronger.

5. Probiotics help.  When I start to have a flare up, I take 2 instead of 1 per day.

6.  Calmoseptine cream was a life saver for me.  I get the probiotic and cream at Costco (cheapest).  The probiotic is on the shelves, the cream at the pharmacy window.

7. DONT GIVE UP.  We have all been there, no lie.  IT WILL GET BETTER and you will love life again.  But remember,  no matter how great your doctor, support of whatever.... You must and will learn how your body reacts to foods, stress,etc.  Just carefully pay attention and the pain will become less the sooner you learn.

My very best wishes, and prayers for you and your family.  Sorry this was so long.

Dee

I really like Dee's post above and agree with everything in it!

I've ordered a bidet attachment for my toilet. You've all made it clear that's helpful and I will listen. I've got calmoseptine cream. I spoke with my doctor to get a prescription probiotic which will help me afford it. As for my diet, I'm on a low fodmap currently. But all I can handle is rice or rice cakes (plain) some chicken and we made some flax muffins (gf). I have just got some ensure shakes as I know they gave them to me at hospital. I dare not eat more than 2 times a day at the moment as it's extremely painful if I do, and I will bleed more.

I hear you all and I'm listening and I'm thankful for your words.

I've been blacking out and taking some falls lately, I'm assuming mostly to the lack of nutrition. I know my celiac is active currently (stress) and I can't handle too much food. There are malabsorption issues I just don't know how to get around.

I've got an appointment with my family doc to see about some valium ? I've not tried it before but I'm hoping to find some ease of mind and that I hope will have some effects on my stress.

I find it, as I'm sure everyone would, incredibly hard to not be able to provide for my family.

Thank you everyone for everything you have given me so far.

Keep us posted, we all care.  Good luck.  Hopefully one day you will be the person answering the need for help.

So I have to say, I do like my gi. She seems very competent and caring. I was unfortunate in that she has taken some time away from work in past couple of years, whilst I spiraled. I was then given to a newbie, to our equal misfortune. Just come out of seeing her and she is confident I have a strong case of cuffitis. It's a familiar feeling so I tend to agree with her. I'm happy to know what it is at least, and I've been given things that will hopefully calm it down now. Once I get hold of it I can start trying food again. So here's hoping

Hey Lee,

glad to hear you have some answers.

I too suffer from cuffititis and have been on canasa suppositories for about 8 months now.

after about 10 days of treatment my urgency, frequency and blood in stool started to resolve. I continue to take a daily maintenance dose.

keep us posted. We are all hoping for a resolution of your troubles and improved quality of life.

Hoorah, Lee! It looks like you have a way forward. I hope you can get the cuffitis under control and your life becomes more manageable again. You certainly have suffered enough!

I am happy to have a target with a method of approach. I came home and immediately introduced a suppository. Then the afternoon came and I had the bloodiest most painful afternoon in the past miserable 2 months. Absolutely shattered from it now. I guess it was not a fan of harbouring a suppository back there just yet. Excuse the language, but fuck me ! Utterly wiped out now, shaking like a leaf.  Had a little cry, but I'm still feeling positive. It won't work instantly I know that, so I will persist. I have hope that this can be controlled and I am desperate to get to that place. I'm going to lay still for a while now until this subsides.

It's still been a good day