Please help

Sally. 

I hear you reaching out.  

I cannot give any medical advice.  And I am not very good at any advice but I can listen. 

But we are all here for you. 

I was where you are now.  With the pouch not working and all the loss of sleep and suffering.  It's terrible.  I know.  I lived it.  It seems like that's the way it's just gonna be.  But there are answers out there for you. 

Maybe another Dr?  

I don't know.  Like I said my medical advice is limited to what I have gone through.  It's hell on earth. 

Some of the others may have some medical advice. 

But keep talking to us.  We are all one.  And here for each other.  I know this is not much help but I saw you posted 4 hours ago and no one answered.  So.  I did. 

Richard. 

I am sorry that you are feeling so badly!  I had 4 years of leaking pouch -- and several surgeries back and forth.  Finally, Dr. Remzi with the Cleveland Clinic (soon to move, I understand) told me my body needs a rest with another temporary ileostomy with possible pouch redo by him.

I am not sure you are willing or can go down this route, but it's my very strong opinion, an ileostomy is better than suffering with a bad pouch (or even colitis!)   You are obviously bleeding -- it's any wonder you have any iron left in your body.   I started to feel MUCH better when I had the temporary ileostomy -- and it gave me the strength to get on with solving my health problems!

An ileostomy can be a blessing in disguise to help you start feeling better!  

Thank you so much Richard and AKA it really means a lot me to have such support and help, I think unless you've lived through this terrible disease people can't understand it even if they really want to...immediately just feeling at the end of the road with it all, it's just I couldn't handle the ileostomy it made me feel so low, I just got through it thinking it would be gone and here I am probably having to go back, I do totally understand what you mean though AKA the pressure is kind off off with the temp ileostomy I just wish they kernel what was going on and then even if they said try a temp ileo and then this is the plan I would feel there was hope, I think the care is much better is America and it's much more understood,  I'm in England at St Marks hospital it's a great hospital but I still think it's way behind...did you guys have or still have bleeding with the j pouch?

Sally xxx

No, I had a pouch redo and I'm feeling great after all is said and done.  There's light at the end of the tunnel, Sally!  Hang in there!

Bleeding with these kinds of symptoms suggests cuffitis to me. Sometimes UC meds can control cuffitis, but sometimes pouch advancement surgery with mucosectomy is needed.  Ask the docs if that's they think is going on.

Hi Sally,

I am saddened to hear someone else struggling and depressed experienced with the same symptoms I was having -- and also getting so little help dealing with it all. I had to go to several different GE Docs and a Rheumatologist to get help -- which meant getting treated for Pouchitis, Cuffitis, and extra intestinal manifestations of IBD. For me this meant a combination of antibiotics, anti-I nflamatories, physical therapy, and anti-tnf drugs. By the end, it also meant pain meds and anti depressants. This time last year I realized I was loosing the battle to keep my pouch and my sanity and began talking to Docs about my alternatives.

What I've done since isn't as important to you now, I only want to make the point that you have options right now -- it just looks like you will have to find some renewed energy to go looking for a doctor to get them. Specifically, your difficulty deficating and with ongoing bleeding sound like problems with the cuff, which could be attributed to its inflammation or construction as Scott mentioned. It could also be associated with your pelvic floor function, which can cause distortions of the pouch or cuff during defication. Then there are the problems you have going on outside your gastrointestinal system -- you'll need a different specialist to diagnose whether these could be a pattern of inflammation which requires broader, systemic medication or therapy. In the meantime, go for the iron or b vit infusions -- you should feel better and they are really easy things to do. Continue to keep up with your diet, nutrition and blood work -- regardless of what the doctors say, you could be experiencing nutritional deficiencies because of your health problems and these could be making your symptoms worse.

I am so sorry you are suffering; I know how hard this is and I have lived many days at the bottom of existence wondering how I am going to get up another day. I will pray for you and those around you to find hope, answers, and help. God bless you, Jennifer

Sally, I know that things are different in the UK, but the options are similar. What is different, it seems, are the lengthy wait times for treatment. So, by the time you are seen things are so out of control that they are at crisis stage. At that point you are more or less boxed in with options that might have seemed like last resorts. 

Returning to an ostomy is not the worst thing, and for many it is a good thing. This is especially true when you have other things going on. The bleeding and erethema nodosum sound like ongoing IBD. Maybe it is just cuffitis/pouchitis. Maybe Crohn's. But antibiotics and suppositories don't seem to be doing it for you. It is not that uncommon for us to need biologics like Remicade or Humira, along with Imuran or methotrexate, to get this under control. These are expensive treatments, so they are not first line. You may want to ask about them. 

Jan

Thank you so so much for your replies it means alot to me,  theres definently somethjbg going on ive bern sent an appojntment for the gi docs to talk about possiblr meds, and ive been sent for an mri scan they havtn told me why, maybe to check the pouch structure, yiur righy jan the antibiotics and supositries arent working, im doing anither 6 weeks of the suppositorits and a 2 week course if cipro, and im taking vsl 3 at thr ssme time and i will continue it aftrr the meds stop. Jan i wanted to ask which anyi inflam medication do yiu take tk keep cuffitis at bay? Was it pentasa? I really want to asj the gi docs if they think this is an option for me before they start talking to be about biologicals.

Sally xxxx

For cuffitis they prescribe mesalamine or hydrocortisone suppositories. I've taken sulfasalazine for years (for cuffitis and IBD related arthritis). But, I wound up on biologics. I am now on Remicade and Imuran. It's only been a couple of months, but so far so good.

Jan

Thanks Jan,  I'm on the suppositories for cuffitis,  I think they are thinking about immunosuppressive medication for me to now but what's bugging me is they haven't given me a reason for why they think I need it. 

I've been told I have cuffitis, pouch seemed of last time but there were changes in the pouch mucosa,  and I have fissures, really really bad fissures, things burn inside the back passage all the time. I wanted to ask I know fissures burn when you pass stool but is it still fissures when it burns inside and pressure inside before you go to the loo?? I don't know what this burning pressure is but it's making my life he'll,  and when I do go to the loo I have to strain until I cry and go red, and then I always feel I haven't emptied and some things stuck in the back passage!  Does this seem like fissures? The nurse has spoken to me about both for fissures, anyone recommend this?

Thanks guys

Sally xxx

Just after my takedown I had the urge and sensation to pass what felt like a golf ball, yet there was nothing to pass.

At the time, one of the medical team suggested it was possibly a kind of butt burn, where the two skin types meet, one that can withstand the bile acid and one that isn't and in time, the bile acid will eventually reduce and the more sensitive skin will toughen.

Some months later, I discovered that during surgery; what remains of the anal canal was dilated and now I believe the dilation caused fissures.

I don't know what remains of the anal canal, its length or what was actually dilated but at the time, I managed to alleviated the sensation by applying a small pea size amount of ilex paste to the tip of my finger and just to the inside of the anal sphincter.

Although, it does say on the ilex tube and its packaging " For External Use Only,"  I didn't know this at the time and as I'd used ilex paste in the past to heal the festering and oozing skin around my Stoma, then it can't do any harm.

I explained to my Pouch Nurse how I'd been using the ilex and she said it's what we recommend now but don't apply it too deep.

It does appear that the sensation you're experiencing is very similar to what I endured.

Hi!

I'm new here. I got my Jpouch in 2008 and at the beginning it was hard to adjust and people think you are being difficult and full of it when they don't really understand the situation. They don't realise that even though its hard on them you have to live with it and its harder for you.

Each persons body react differently to things but what I have noticed for myself is that too much sugar is a bad thing. I have cut out gluten as well as dairy for more then one reason but it makes a huge difference. My tummy doesn't cramp as bad and doesn't get upset as often. Its hard cutting out your favourite food but in the end its worth it. I take an iron supplement in liquid form as my pouch doesn't digest the pill form. I also take a probiotic every day and if I don't have a flare up I can go weeks without taking Imodium. This being said I still wake up a lot during the night. Either with insomnia or a need for the loo. Its hard but find what helps you! I have also been blessed with ibs lol! And have my first official flare up. I have to say the cramps are really painful and having to deal with the bloat sucks. But I try to drink peppermint tea as well as ginger tea every day. I hope some of this can help you! And remember you are not alone!

Oh no I posted a reply to this but I don't know where I've posted it! Wanted to say thank you for all the help and support it means so much when you feel so down and alone, I've really been keeping a close eye on what's going on, I know I have fissures and cufitis and I'm using suppositories for that but because of the fissures I haven't been able to keep up with the suppositories,  the burn I'm getting is calming a little with all the creams that everyone has mentioned and the sitz bath is helping no end but only whilst I'm in the bath, as soon as I get out its this intense pressure in the anus. The thing I felt yesterday has me really concerned, between the anus and vagina the skin is really hard and when I press on it it feels like something is coming or wants to come out of my anus and it hurts to press it there, also I've got stomach cramping higher up the abdomen like under the ribcage and more on the left hand side.

Does this sound like a fistula? And if so can it be fixed and how?

Is it serious? Because I feel a little hot or maybe just with the worry.

Is the cramping something separate? 

I feel so alone my husband had started telling me it's better when I'm not around he gets more done and it's more in my head than anything I feel useless and alone and my hands are tied because I have 2 little ones, can anyone help?  

Thank you so much everyone

Sally

I don't know how you feel towards your husband but he's wrong.

He should be supporting you, even if he doesn't understand, he should be able to see what you're going through and support you.

Although, he could be acting in such a manner towards you because he doesn't understand, he's worried, scared and it's his way of dealing with it rather than face the truth.

But that's not happening, so you need to be strong and ignore his silly comments.

You need to find a support group close by, where you can speak face to face, ideally a group with members like ourselves, who have experienced an illness of some kind which has lead to where we are now.

You must seek professional advice from a Doctor rather than worry, it could be nothing but only a Doctor can give a definitive answer.

Thank you strange I think that's a good idea I'm going to look a group near me I think I really need it, I'm going to call my nurse tomorrow and probably just go in to a and ee

(Sorry my post cut off) ... A and e, really hope they can give a solution it's miserable like this for me and my kids xxxxx

Another development...as of a few days ago I'm going to the loo a lot more just because the pressure gets so bad, and today it's been every hour!