Crohn's Disease

shalalala

OUTDOORLASS wrote: »

Morning Shalalala,
My heart goes out to you. Rant away, and get it off your chest. All the other Chronsies understand what you mean, whereas somebody who doesnt have the damn disease, wont. i.d give you the biggest, warmest hug if I could....x

thank you. Means a lot. People just seem to want to fix me in the normal world. Like my mother keeps on seeing articles of things that worked for other people and I should try it. I am not even in the headspace to comprehend anything like that. Day to day is hard enough. Thank you. I needed that hug!:)

OUTDOORLASS

Shes a mother, and mothers need to fix things.!!!! I do, and I.d imagine most other sufferers are constantly told of an article they have seen on the disease. If you hear people talking generally about it, it gets dismissed as..."ara a problem with the bowels".They dont understand what Crohns does to you mentally and physically...even those closest to you would.nt have a clue what physical pain and torture a bad flare up is, or what you are going through.

The_Conductor

shalalala - sorry to hear that you're feeling under the weather.

I know its hard when you're getting all manner of 'advice' from people- who think they know what they're talking about- on the strength of reading a few articles.

People who don't have Crohn's will never understand what it means to live with the condition.

I'm not going to offer you any advice- other than try to do what you find best.

I know what you're going through- hugs.

Shane

orlanemo

shalalala wrote: »

I am struggling at the moment. After a really tough month and a half my body has now decided to flare up. But regardless of that it is the mental aspect that I am finding hard.

I just don't like my body. I know I have it good compared to a lot of sufferers, I haven't been operated on or anything. I just feel like my body is failing me. It is
attacking itself and I am just so angry.

I am 25 and newly single. Full time job which makes me exhausted all the time.
You may as well be dating a 90year old!


I know that we just have to deal but I just
don't want to. As I said before I know that there is tonnes worse out there but I am
just not feeling it.

Sorry about the rant. I just wanted to get it all off my chest!

As the others said - rant away. This is your crohns tribe... they understand. I was talking to my niece the other day.
She is seven and having bowel problems. (There are seven adults in my family with
IBD and she is not diagnosed with
anything.) She siad it was disgusting to
talk about these poo problems. I said
there nothing disgusting about talking
about it, especially to people who
understand, or share some portion of
your pain.

I feel really lucky. I was diagnosed 9 months after my mother. I had a friend on this journey, someone who could really
understand.

People who have never had a chronic long term illness don't understand. People say some goddamn awful things. Some of it comes from a well meaning place too. Which makes it hard because I know they mean well, but they still make me angry.

Here are two of my favouites - "At least its not cancer" or "sure everybody has that now". The fixing and suggestions wreck my head. "13 years" I want to shout "13 years Ive had this and you think I haven't exhausted every bleeding avenue, tried every snake oil available." But then I'd be the rude one. Cause its not rude to go around giving unsolicited advice to people who haven't asked for your help!

I have come to a place where I say to myself "I am not a problem that needs to be fixed. This is me, and this illness is part of me." That took along time to get there.

What people with long term illness need is acknowledgement of their condition and acceptance, not cures or advice. So if its someone I love and want in my life I tell them that. I tell them exactly what I need from them today. "Today I need you to listen and not give suggestions". If they listen I love them even more. If they can't do as I ask I find someone else who is more equipped to talk to me. I don't love them less I just accept that they are not able to give the kind of support I need.

If they are randomers who dole out unsolicted advice. I nodd and look like I'm listening. I don't set them straight - I've a limited amount of energy and I prefer to spend it on the ones I love. Then I walk away and put them on the arse-hole list. Its quite long now

MORISH

shalalala

How are you today? i hope its been a bit better than previous days

If it helps i met my husband after my first surgery and had an open fistula on my abdomen i thought i wasnt worth anything but he made me better, had the fistula surgically closed a few months after meeting him and i believe it was being happy that helped me heal quickly after my second surgery. Try to have faith there is love out there for you. I know its not a good time for you and you will defiantly find support here. I dont visit often but i always have loved the forum for advice and knowing your not alone with chrons. I have had it for nearly 20 years and have not let it dictate what i can and cant do, although i'm lucky humira is a drug that keeps me in remission, but before that came on the market i was very ill with chron's and yes the fatigue is awful but its something you will have for life sometimes worse than others and you need to find ways to deal with it, its not easy i know but trust me you can find a way to have a life with chrons. I work 13 hr shifts both day and night, married with 2 small children and i just have to get on with it even when i dont feel like getting out of the bed, but all that stuff is LIFE and it keeps me from going to the dark places of chron's that's just MY way, it's not for everyone so please don't think I'm saying that's what you should do I'm just saying that's what works for me. I hope you can find a way through this tough time we have all been there its a big adjustment.

I want to put something out there to my fellow chronies, does anyone also have coeliac disease as well as chron's? I went to see my consultant the other day and he said i have iron deficient anemia now this is not a new thing in fact he has been treating me for this for over 5 years with intravenous iron so i assumed it was part of the chron's but he say's its not??? l I took myself off humira about 18months ago as i developed bad psoriasis which kept getting infected and causing cellulititis but recently i have been very bloated and felt constipated but had diarrhea, also had episodes where when i ate my abdomen swelled and got very hard and i had discomfort i felt like i had an obstruction and i would end up having to make myself sick a few hours later and the food would be totally undigested so thats why i went to my consultant. I had a test for coeliac about 15years ago and it was negative but the consultant said you can develop it. I'm worried now cos i really dont fancy A gluten free diet, i bake loads and decorate cakes as a hobby total disaster!! I'm going to hospital at the end of the month for OGD, Colonoscopy and MR endoscope anyone else ever had this happen, I'm hoping its just the chron's and not coeliac disease!! anyone else have coeliac as well as chron's??

shalalala

Thank you everyone. You have been so kind with your words and offers of hugs. Every day I am grateful that I am not alone in this. Thank you again! Xxx

Ush1

Just found out I'm down to 50% kidney function which has been caused by Asacolon. Said the lost function won't be coming back and it's just a case of trying to maintain what I have.

Anybody any experience of this?

Turtwig

Hope everyone's a-doin well. Well, uh, relatively well anyway.

Shalala,
If you told a homeless person in Dublin they didn't really have things that bad compared to homeless folk in Africa. You'd be telling the truth. You'd also deserved to be punched in the face. Even if something is trivial, it can get us down and the most important thing to do is talk about it. Vent, moan, bitch (within reason!). So, don't feel terrible or ashamed about venting. No problem is ever insignificant. Especially ones that distress us.

One thing that absolutely pisses me off about having an LTI, or any illness for that matter, is a lot of people assume you're doing something intrinsically wrong. You're sick because you did something wrong. Sometimes it's the case but I hate the automatic assumption. Oh if you just did this you'd be all better weller. You're still sick? How can that be so? Shur we all get a bit of tummy ache. Get on with it and it goes away again!
I get on with it alright, more than those feckers would ever appreciate.:mad:

Ush,
Bugger that. That's really shtty news.
*Hugs*
Given that's it's kidney failure don't let them leave any stone unturned as to any other contributory factors.

CathyMoran

Ush1 wrote: »

Just found out I'm down to 50% kidney function which has been caused by Asacolon. Said the lost function won't be coming back and it's just a case of trying to maintain what I have.

Anybody any experience of this?

All That I can do is send virtual hugs - it is my husband that has crohns, I have type 1 diabetes, am an oesophageal cancer survivor and have a few other things. I do understand the worry about your kidneys. I had acute kidney failure post surgery and I have and do eveything I can to look after them.

orlanemo

Ush1 wrote: »

Just found out I'm down to 50% kidney function which has been caused by Asacolon. Said the lost function won't be coming back and it's just a case of trying to maintain what I have.

Anybody any experience of this?

Hey Ush,
I don't but my dad has 50% kidney function in one kidney and none in the other. He had an op in late teens to remedy a congenital abnormality which didn't become apparent until then. It would have been a major operation involving significant time off from work. In his 50s he developed Type 2 Diabetes and thats when they noticed he had so little kidney function. His doctor's theory is that the operation was not a success and thats when the kidney stopped working. So he may have spent 30+years with one kidney doing all the work. He is one of those men who never took a sick day or visited the doctor so there is no way to know. He worries now about what might happen if that worsens but he is functioning well into his 60s, doing DIY, eating bags of jellies in the car that he thinks we don't notice and wrecking my mam's head.

Big hugs to you

Northern Monkey

Hope everyone is doing well.

Are the B12 injections painful? My levels have come back low after my last blood test, so it looks like I'm going to have to start getting them.

The_Conductor

Northern Monkey wrote: »

Hope everyone is doing well.

Are the B12 injections painful? My levels have come back low after my last blood test, so it looks like I'm going to have to start getting them.

Its an intramuscular injection. My GP gave me an orange to practise on, and I've been giving myself the Neocytamen injections ever since. 9 times out of 10 its painless, you will get the odd one that hurts like hell, but by and large its painless. Ask your GP if you can give it to yourself, its so much handier than having to make an appointment.

OUTDOORLASS

And cheaper.....!!!

The_Conductor

OUTDOORLASS wrote: »

And cheaper.....!!!

Its about 12 Euro for a box of 5 vials- and if you're on Neocytamen its probably a monthly injection (sometimes I get put on Cytamen weekly- instead).

So- yes, you save a small fortune.

Ush1

Thanks folks for the kind words.

Had a biopsy on my kidney on Monday, still sore from it.

I'm thinking of going legal as this was going on for four years and was showing up in my blood work. The gastro consultants would just say drink more water and that your kidney function is a bit off. I had no idea how severe it was getting and why it would take them so long to refer me to a nephrologist.

Turtwig

Prep day! Yay! Woo! :rolleyes:

There should be a special place in hell for the person who invented Klean Prep and even more special place for me who keeps forgetting to seek out alternatives to the wretched formula until it's too late. :mad:

Ush1

Turtwig wrote: »

Prep day! Yay! Woo! :rolleyes:

There should be a special place in hell for the person who invented Klean Prep and even more special place for me who keeps forgetting to seek out alternatives to the wretched formula until it's too late. :mad:

Feel for ya there.

I hated the Klean Prep so much that I asked for the other stuff Picolax the next time. I'm not sure if it was to do with my kidneys or that I stopped drinking water too early but I felt absolutely awful and had to be put on an IV drip after the scope. Like the worst hangover of my life times 1000.

Apparently there is a higher risk of dehydration with the Picolax, never again for me. As much as I hate Klean Prep that stuff was pure hell.

Northern Monkey

Turtwig wrote: »

Prep day! Yay! Woo! :rolleyes:

There should be a special place in hell for the person who invented Klean Prep and even more special place for me who keeps forgetting to seek out alternatives to the wretched formula until it's too late. :mad:

I last went through that a few days before Christmas. The only bonus was I felt I could eat more Christmas dinner

Turtwig

Was feeling like absolute sht there for the last half hour or so. Was all bloaty and full of cold shakes. Now the bowel's have started to move there's some relief. Still kind of horrible but far less distressed.:)Laxatives work reaaaaaaaally slowly on me.

Had picolax before for a small bowel follow through. Pretty sure a colonscopy would require a shed load more than 2 tablets. Anyway, nothing happened. Just cramped up like crazy.

kildare lad

has anyone tried any alternatives to drugs..i.e herbal stuff and has it worked for them!!

The_Conductor

kildare lad wrote: »

has anyone tried any alternatives to drugs..i.e herbal stuff and has it worked for them!!

I tried herbal stuff- and found a few little helpful things- such as peppermint tea helping settle my stomach- but no real benefit from anything else. I found a policy of excluding foods which contained specific ingredients to be a lot more useful- aka- avoid anything with Monosodium glutamate, carrigeen, maize and its derivatives etc etc. Some foods- like mushrooms and stirfries- are a massive no-no for me as well (or indeed any stringy fruit or vegetables).

So- yes and no- but learning to recognise what foods I had issues with- was of far more use than taking herbal remedies (when I was young my parents were fond of various herbal remedies- but they were as good as useless from the perspective of the ongoing damage Crohn's caused me).

We're all different though- there isn't a rough and ready list that is in common for all of us- we're all different.

kildare lad

thanks for your reply..jus sick of bein on meds, ya never no wat the side effects are in the long run, i was talkin to people on facebook on a lot of them recommended weed as well, dont think my head would be able for it tho!!

The_Conductor

kildare lad wrote: »

thanks for your reply..jus sick of bein on meds, ya never no wat the side effects are in the long run, i was talkin to people on facebook on a lot of them recommended weed as well, dont think my head would be able for it tho!!

Plus you have the issue with legalities etc.
Its legal in quite a few US states (and being actively looked at in others)- but its something that is probably going to be down a long road here.

Personally- I couldn't see myself taking it- I'm finding exercising care with my eating to be the best thing I've done- and far more effective than any meds I've been on. My ESR and other bloods- are still shot- years after I stopped my Imuran. There are side effects to most of our meds- yes- but there are consequences of not having some sort of a regimen in place that works (and each and every one of us- needs to have a regimen tailored especially for ourselves).

The one thing I keep handy- are stemetil injections- I'd be lost without them- other than that- I try to do without intervention, unless its an absolute emergency (which is probably 2 or 3 times a year at this stage).

Turtwig

kildare lad wrote: »

thanks for your reply..jus sick of bein on meds, ya never no wat the side effects are in the long run, i was talkin to people on facebook on a lot of them recommended weed as well, dont think my head would be able for it tho!!

I actually look at this another way. The side effects of medicines are at least documented. The side effects of many herbal things aren't. You definitely don't know what side effects they have in the long run. At least with the meds you have the risk assessments and know what to look out for.

kildare lad

one of the side effects is the munchies, and its hard to eat properly when you have them!!

camroc76

Ush1 wrote: »

Feel for ya there.

I hated the Klean Prep so much that I asked for the other stuff Picolax the next time. I'm not sure if it was to do with my kidneys or that I stopped drinking water too early but I felt absolutely awful and had to be put on an IV drip after the scope. Like the worst hangover of my life times 1000.

Apparently there is a higher risk of dehydration with the Picolax, never again for me. As much as I hate Klean Prep that stuff was pure hell.

My gastro guy has me taking both as a prep for a full scope every time....pico in the morning and Klean prep in the evening.

Delightful stuff !!

Turtwig

camroc76 wrote: »

My gastro guy has me taking both as a prep for a full scope every time....pico in the morning and Klean prep in the evening.

Delightful stuff !!

Good God!:eek: Are you sure you didn't do something to piss him off seriously bad in real-life once?

dloob

Turtwig wrote: »

Prep day! Yay! Woo! :rolleyes:

There should be a special place in hell for the person who invented Klean Prep and even more special place for me who keeps forgetting to seek out alternatives to the wretched formula until it's too late. :mad:

There is actually a circle of hell for the inventors of prep formulas.
The problem with the alternatives is all their inventors are in that circle of hell too as they are all as bad.

The_Conductor

It appears that only those conditions covered under the LTI scheme are to go get increased/capped water allowances. If you suffer bowel disease and need regular toilet usage- unfortunately- you're out of luck. A final list is being compiled by the Minister for the Environment, Community and Local Government.

The Journal have an article on it here

Please petition the Minister- all IBD sufferers deserve to be able to go to the toilet, we're getting shafted by not being on the LTI scheme as-is- if we're to be shafted on water charges too- I genuinely don't know what we're to do.

camroc76

Turtwig wrote: »

Good God!:eek: Are you sure you didn't do something to piss him off seriously bad in real-life once?

Not to my knowledge ! It was for a full colonscopy so he wanted to get the clearest picture he could get !.

On the other side of the coin, I was told on Thursday, that I needed to consider removal of the colon...awaiting biopsies at the moment so he noted something of concern.

Fingers crossed !