Crohn's Disease

Tony H

Glad to hear that the pain is down a notch hope the rest of your symptoms follow suite in the coming weeks,
My pain is down a lot as well still a lot of joint discomfort but the bm''s are really good ,down to about 2 a day with no urgency and no side effects at all which is great.

MsGiggles

The_Conductor wrote: »

Update-

A bit of a one step forwards, two steps back for me.
Toilet is a lot better (though I am now on 12 imodium a day- the pharmacist insisted on ringing the consultant to confirm, as the max dose she was willing to give me was 5 a day).

Abdominal pain is a lot better.

Occasional massive bloating- and a quite remarkable increases in gas production- the amount of gas I'm producing is quite staggering- and if I don't expel it- I'm worried I'll cause damage (not to mention the pain it causes). Unfortunately- I have no idea when its just gas- or whether there will be some faecal matter involved too- so I'm still running to the toilet- though for not entirely the same reason.

Problem- issues arising with joint pain. Knees are the biggest issue- but also ankles, wrists and elbows. When I walk up a stairs- you can hear a crackling sound from my knees and ankles- sort of like when you pour milk into Rice Krispies. Its quite painful- but mostly only occurs when walking up stairs. When I lift things- I get similar from my elbows and wrists.

I'm not sure whether this is Humira related or not- but it certainly is far more apparent since my loading dose- to the extent that other people can hear the cracking noises from my legs on stairs- where previously I might have thought I was imagining it- and its a lot sorer.

Night sweats- no change. Temperatures- no change. I have one of the Braun thermometers- it registers 39-40 a lot of the time- which appears to be pretty normal for me.

Bloods are getting worse. My gastro consultant has said he is going to talk to a haematologist about getting me off warfarin when I go back in September- and onto something more appropriate.

Distended colon a bit better- though leakage still an issue (I'm constantly making toilet paper pads- to try and mop up leakage so I don't soil my clothes). Distention is a good bit better though- its no longer actually sticking out- though it is quite raw, and if I rub it at all with wipes when I'm in the toilet, bleeds profusely (not helped by the aforementioned Warfarin).

So- all in all- I'm a bit of a mess- but in a lot less pain than previously- which is a relief- though I still have a long list of problems- which has gotten a few items longer, since I went on the Humira.

The difference in pain- is remarkable- I have to state this- it is quite a relief and this alone makes it worth while- though I have no idea where the hell I'm going to go from here..........

I have to say your openness is something that I sincerely appreciate. I'm a relative new comer to the disease and I am learning so much. I'm so sorry that your going through some horrid times but you truly are giving me the strength to be extremely thankful for my good days.

Thank you doesn't seem enough, but thank you, thank you , thank you )

Northern Monkey

Hopefully another few weeks and you will see further improvements. I have the joint pain, particularly my knees, but I've also had a dull pain in my ankle that has been there since I broke it 15 years ago that has been non existent since I've been on humira. I can't remember exactly, but I think it was 6-8 weeks before I started to see big improvements.

mcratsix

I echo the sentiments above, hope you see more improvements soon.

I absolutely loathe Chron's and colitis.

The_Conductor

MsGiggles wrote: »

I have to say your openness is something that I sincerely appreciate. I'm a relative new comer to the disease and I am learning so much. I'm so sorry that your going through some horrid times but you truly are giving me the strength to be extremely thankful for my good days.

Thank you doesn't seem enough, but thank you, thank you , thank you )

Thanks MsGiggles- I guess I don't see any point in sugar coating things- but at the same point in time- I want to try and ensure that I live my life to the best of my abilities- without allowing Crohns (or anything else) define me.

Life would be very different if I didn't have Crohns- but at the same point in time- I am who I am- and the best that anyone can do- is take joy in the little things- and live every day to the best of their abilities.

I do feel jealous of other people sometimes- but then I see how things that I consider fairly inconsequential floor them- and I feel thankful that I'm able to get through what I consider to be little things- relatively unphased.

Life is short- we have to make sure we do our best to live it to its fullest.

OUTDOORLASS

Hey Mr C, you sure are going through the horrors at the moment. One thing sticks out to me..night sweats and
high temperatures....sure sign of infection. Before I started the Humira, I had some awful fistulas that faecal
matter was passing through, to the surface. That meant infection in that area, because poo is not meant to
pass through normal body tissue. I was on an antiobiotic longterm, flagyl, which they would change periodically
to another one, as flagyl can be hard on the stomach. This lasted till the fistulas closed in, and the infection
stopped.
I would speak to your GP, Consultant, or gastro nurse at the earliest opportunity. Even thinking of the amount of
gas u are producing.....
Bring back Diarmiad ODonoghue........

The_Conductor

OUTDOORLASS wrote: »

Bring back Diarmiad ODonoghue........

I hope he is enjoying his retirement- a nicer gentleman I don't think any of us will ever meet.

I'm under Gareth Cullen- his protegé- seems nice, and very competent-and he is the person who has put me on Humira. I have an appointment to go back to him in September.

I don't know if the constant temperatures are infection (I've had them for as long as I can remember)- I do have fistulas though- many of them- which both Diarmuid O'Donoghue and Dr. Cullen both commented on- most recently after an MRE a few months ago.

Anyhow- tonight for dinner I had chicken in a Worcester Sauce- with a bottle of beer- something that 98% of the time would have me in agony for days- but thanks to the Humira- and a little less stress as we're on a staycation and I don't have to go into work- actually being able to eat something like this (I love Worcester Sauce)- and have a bottle of beer- are almost dreams (the bottle of beer had been in the fridge since before last Christmas).

Now- to get pyjamas on my two little ones- bedtime stories read to them- and to bed myself.......

Have a nice evening/night everyone.

The_Conductor

Cooler bag and 2 icepacks arrived in a very battered parcel in the post this morning. It'll be going up on a shelf for future use.

Feeling knackered.

MsGiggles

The_Conductor wrote:

Cooler bag and 2 icepacks arrived in a very battered parcel in the post this morning. It'll be going up on a shelf for future use.

Hope the tiredness improves, sending positive vibes !

Tony H

The_Conductor wrote: »

Cooler bag and 2 icepacks arrived in a very battered parcel in the post this morning. It'll be going up on a shelf for future use.

Feeling knackered.

Got my little red bag as well this morning , very fetching , hope the tiredness eases off soon .

MsGiggles

Good Morning All,

Hope we are all doing well. I have a 2nd Job interview this morning so it was stress city in my house. I had the first one last week, and I remember I had the most horrendous day I have had in a long time. My interview was at 2pm so I daren't eat until after, and even though I hadn't eaten I must have (no exaggeration) been in and out to the bathroom 15 times before I even left the house......I know stress can make symptoms worse but I didn't quite believe how much until recently.

I remember when I first got sick I thought it might be stress (I work as an Exec Assistant) so can be fairly stressful at times.......

I am really just venting here, nothing else!

Thanks for listening

Giggs

MsGiggles

MsGiggles wrote: »

Good Morning All,

Hope we are all doing well. I have a 2nd Job interview this morning so it was stress city in my house. I had the first one last week, and I remember I had the most horrendous day I have had in a long time. My interview was at 2pm so I daren't eat until after, and even though I hadn't eaten I must have (no exaggeration) been in and out to the bathroom 15 times before I even left the house......I know stress can make symptoms worse but I didn't quite believe how much until recently.

I remember when I first got sick I thought it might be stress (I work as an Exec Assistant) so can be fairly stressful at times.......

I am really just venting here, nothing else!

Thanks for listening

Giggs

Ooooo update : I got the job ! Woop !!

shalalala

MsGiggles wrote: »

Ooooo update : I got the job ! Woop !!

Wooooo Congrats! I have been constantly interviewing of late, not as bad as 15 trips but I have been doing the no eating thing in preparation. Sucks!

The_Conductor

MsGiggles wrote: »

Ooooo update : I got the job ! Woop !!

Well done! Hope it turns into your dream job!

Northern Monkey

Just wondering, how many of us have stressful jobs or are easily stressed. Mine is stressful, but I'm quite a laid back person by nature, so I don't think the stress gets to me as much as it should.

My brother in law has colitis and maintains it was at its worst when he was having issues with his business.

The_Conductor

Northern Monkey wrote: »

Just wondering, how many of us have stressful jobs or are easily stressed. Mine is stressful, but I'm quite a laid back person by nature, so I don't think the stress gets to me as much as it should.

My brother in law has colitis and maintains it was at its worst when he was having issues with his business.

I deliberately took what was a significant paycut at the time- to take a less stressful job with flexitime and other benefits which would help if I were ever ill- however, at the cost of a lower salary. People told me I was crazy at the time- but its a decision I don't regret- though times may be tough.

MsGiggles

Northern Monkey wrote: »

Just wondering, how many of us have stressful jobs or are easily stressed. Mine is stressful, but I'm quite a laid back person by nature, so I don't think the stress gets to me as much as it should.

My brother in law has colitis and maintains it was at its worst when he was having issues with his business.

I am definitely affected by stress, but then again I am newly diagnosed so that could be all part of it too. Since getting diagnosed I have tried to de-stress my life, but I do work for a person that on sight causes everyone stress so not entirely sure that she helps....:cool:

I am definitely learning to control it and learning to put my health first. I am starting a new job soon - Finish my old one and then the next day onto the new one ! I didn't disclose that I have crohn's, assume I don't have to.....

Northern Monkey

The_Conductor wrote: »

I deliberately took what was a significant paycut at the time- to take a less stressful job with flexitime and other benefits which would help if I were ever ill- however, at the cost of a lower salary. People told me I was crazy at the time- but its a decision I don't regret- though times may be tough.

I'm in a similar situation myself currently. Thankfully the disease has been good to me for the last couple of years, but I know that might not always be the case. As I said, I don't get stressed easily, but I've been doing 11/12/13 hour days pretty much every day for the last few years and the lack of work/life balance is starting to get to me. I'm at the point where I would take a significant pay cut for a normal 9-5 where I could go home and not think about work until I'm back there the next morning.

OUTDOORLASS

Yep. Work stress definately was a major factor in my Crohns history. Crohns fairly dormant at the moment.

mcratsix

This year has been the worst my colitis has ever been and I think stress is a factor. I did the leaving cert, then after being swamped with work in college had to drop out, then got an awful job where I had a workplace accident and nearly cut off my thumb (it's almost back to normal now, thankfully) and just two days ago I was told that I won't get campus accommodation in ucd so I've the stress of trying to find affordable student accom in Dublin. No surprise I've had lots of flare ups.

MsGiggles

I am feeling a little anxious at the moment, although I have gotten a new job after being told I am being made redundant, start the day after I finish here !!

I got diagnosed last year and then came back to work on a 4 day week after being off for about 4/5 months. I suppose I am nervous now that I will be back working a 5 day work in this new job. I haven't my new employer about my Crohn's and I don't think I have to.....(Do I ??)

I am just going to give it a shot and see what happens ! No point in not trying something because you are afraid I guess...!

sdublin

Hi Just a quick hello from an experienced Crohns sufferer.
Quick history , 36 diagnosed aged 10.
2 x recection surgeries.
Been on every medication and tried every diet ect. . Currently on Stelara.injection 90 mg monthly.
Just here to offer advice /support and check in every now and then.
The main thing to remember is even though there are many bad periods with the illness, things do and will improve and the treatments available are becoming more effective.
There is also excellent research being pursued out there so gotta keep the positive vibes!!

ChartAccount

Hi ppl,

Has anyone been researching the use of Cannabis as helping achieve remission?

/reset.me/story/teen-who-uses-cannabis-to-treat-crohns-disease-makes-psa/

youtube.com/watch?v=SK9jrGAlwuw

youtube.com/watch?v=hmYNLNF7NBw

You need to put the www before links, i cant as a new user.

There is an oil called Sativex currently is use for ppl with MS, and off label for other illnesses. Not sure if its the right mix for Crohns.

The_Conductor

Update-

I'd been feeling under the weather with a flareup- and my consultant offered to put me on prednisone to try to get to grips with it. I started on a dose of 60mg and was to reduce it as quickly as possible. Everything went fine for a few days- however- then the amount of blood I was passing shot up. I'm on warfarin too (one of the damn side effects of Crohns is an increased propensity for blood clots- I got mine on the lungs). The warfarin was obviously effected by the prednisone- however, I didn't know it at the time. I collapsed at home with massive internal bleeding. I was taken into A&E and admitted- where I given blood transfusions. My INR in hospital was 8.7- and my haemoglobin barely 6.

I had a few different procedures- which showed intestinal abscesses and bleeding ulcers- which are being treated with a few different antibiotics- and I'm speeding up getting off the prednisone. I persuaded them to give me a ferritin drip too while I was there- thankfully. My humira is now weekly- and appears to be working.

I feel like I've been run over by a steam roller- I'm exhausted, and weak- and constantly feel dizzy as though I'll fall over.

I missed my little girl's first day in school- while I was there with her in spirit- I was having surgery that morning.

I hate this damn disease.

MsGiggles

The_Conductor wrote: »

Update-

I'd been feeling under the weather with a flareup- and my consultant offered to put me on prednisone to try to get to grips with it. I started on a dose of 60mg and was to reduce it as quickly as possible. Everything went fine for a few days- however- then the amount of blood I was passing shot up. I'm on warfarin too (one of the damn side effects of Crohns is an increased propensity for blood clots- I got mine on the lungs). The warfarin was obviously effected by the prednisone- however, I didn't know it at the time. I collapsed at home with massive internal bleeding. I was taken into A&E and admitted- where I given blood transfusions. My INR in hospital was 8.7- and my haemoglobin barely 6.

I had a few different procedures- which showed intestinal abscesses and bleeding ulcers- which are being treated with a few different antibiotics- and I'm speeding up getting off the prednisone. I persuaded them to give me a ferritin drip too while I was there- thankfully. My humira is now weekly- and appears to be working.

I feel like I've been run over by a steam roller- I'm exhausted, and weak- and constantly feel dizzy as though I'll fall over.

I missed my little girl's first day in school- while I was there with her in spirit- I was having surgery that morning.

I hate this damn disease.

The_Conductor,

I am so so sorry to hear of recent events for you - I got a notification of a new post and I can honestly say I had tears streaming down my face when I got to the end. Honestly, you are demonstrating awesome personal emotional strength - I am not sure where my head would be at in similar circumstances.

I can only speak for myself, but your posts give me the courage to fight this disease and count myself lucky that I am not going through a so very tough time like you are at the moment.

My thoughts are with you. I really hope it won't be too long before you are back on your feet ready to battle again.

Tony H

The_Conductor wrote: »

Update-

I'd been feeling under the weather with a flareup- and my consultant offered to put me on prednisone to try to get to grips with it. I started on a dose of 60mg and was to reduce it as quickly as possible. Everything went fine for a few days- however- then the amount of blood I was passing shot up. I'm on warfarin too (one of the damn side effects of Crohns is an increased propensity for blood clots- I got mine on the lungs). The warfarin was obviously effected by the prednisone- however, I didn't know it at the time. I collapsed at home with massive internal bleeding. I was taken into A&E and admitted- where I given blood transfusions. My INR in hospital was 8.7- and my haemoglobin barely 6.

I had a few different procedures- which showed intestinal abscesses and bleeding ulcers- which are being treated with a few different antibiotics- and I'm speeding up getting off the prednisone. I persuaded them to give me a ferritin drip too while I was there- thankfully. My humira is now weekly- and appears to be working.

I feel like I've been run over by a steam roller- I'm exhausted, and weak- and constantly feel dizzy as though I'll fall over.

I missed my little girl's first day in school- while I was there with her in spirit- I was having surgery that morning.

I hate this damn disease.

good to know that the weekly humira seems to be working , I really sympathize with you , Its a shame you missed your daughters first day but take it from me there will be many more special days that she will remember , feel better soon .

shalalala

I am so sorry The Conductor... you are a great source of information and support to so many of us that sometimes I forget you have your own battles. I am glad you are feeling better now. I really hope the humera continues to work for yoh and that you don't miss anymore things for this awful disease. X

OUTDOORLASS

Like the others, I am gutted for you. The forum had been quiet recently with no updates from anybody, and I had been wondering how yourself and Tony had been doing on the Humira. That was one scary event. You could put up with a lot, but I think seeing blood has to be the worst. I had a haemorrage some years ago, ended up in A and E in Vincents,
and my haemoglobin was down to 4.9...... I had another about 3 years ago, and it went down to 7.5...
Your blood scores are bad at the best of times anyway.....
Ah God, I have a knot in my chest for you....we might all be faceless strangers but we do care for you and for each other.
I know we are all ages, but I think of you as the Leader of this Forum. I sincerely hope you turn a corner soon, and gain
some kind of life quality. Best wishes...X

Northern Monkey

MsGiggles wrote: »

I can only speak for myself, but your posts give me the courage to fight this disease.

OUTDOORLASS wrote: »

I know we are all ages, but I think of you as the Leader of this Forum.

Pretty much sums up my thoughts as well. I'm sure it's not a title you aspire to, but I think of you as Mr Crohn's. I'm sorry you are having such a tough time and hope the humira helps you turn the corner soon.

MsGiggles

Hello All

Just got a date for my colonoscopy this morning. 1st Oct. Seems super fast considering my appt with Consultant was only on Tuesday.

This is my 4th one and I still can't shake the sheer panic I feel about it.