Crohn's Disease

The_Conductor

inca2 wrote: »

Just today, I've started experiencing really sharp pain in my right iliac fossa region and severe weakness.

If the pain in this region is sudden, and sharp- please go to your GP.
A majority of the time- pain which suddenly appears in this specific area is related to appendicitis- not Crohns.

inca2

The_Conductor wrote: »

If the pain in this region is sudden, and sharp- please go to your GP.
A majority of the time- pain which suddenly appears in this specific area is related to appendicitis- not Crohns.

Yes, absolutely - I've put that across badly - it's not really sudden, it's the same area I've been experiencing discomfort in for the last few months. Thank you for your concern. I ran it by my consultant earlier today too (luckily we work in the same place!) and my understanding is that RIF pain is very indicative of terminal ileitis - he wasn't too concerned. Today, it's just been much more obviously pain than discomfort. It's intermittent, settling briefly with Buscopan and Colofac and definitely relieved by bowel motion. I don't have any other symptoms out of the ordinary either, but will of course seek medical attention if it worsens beyond what has become the norm for me. I also have quite a bit of LIF tenderness the past while. God help anyone who attempts an abdo exam in the next while!

Ravage1616

Week one in hospital down! Under the care of new consultant.... way better than my last!

She really wants to get this flare under control, which started at Christmas but constantly getting worse! Gone from 20 plus stone to 11st 6lbs in less then a year. Lucky I had it to loose!

Bowel rest starts today which is going to be hard, at least another 2 weeks in hospital and possible surgery!

Wish me luck!

Rav

OUTDOORLASS

Janeymacarooney....that was some weight loss........
Hope you get on top of the flare.......

essgee268

have been reasonably good for the last 2 years, (had 2 iliem resections in the last 10 years) but I picked up a finger infection about 3 weeks ago and started a course if antibiotic last Thursday which resulted in a Flare up. has anyone here have similar or is this common, found antibiotic tabs fairly severe on tummy I am on 40mg of Humira every 2 weeks and on 150mg Imuran daily,

inca2

Hi all, just an update on my previous post.

I was diagnosed with left-sided colitis three weeks ago, despite the fact that most of my pain is on my right side (?terminal ileum). A decision was made to abandon scope due to the level of inflammation on the left and deal with that first - so unfortunately, we still don't know what we're fully dealing with. I'm now waiting for MRI small bowel. CT was reassuring that there was no involvement of the terminal ileum but may just not have been sensitive enough. My consultant feels that it's unlikely that it's Crohn's considering the obvious left-sided colitis but feels that there is definitely something more going on. Anyone have a similar experience/clear results on MRI small bowel/initial diagnosis of left-sided colitis that turned out to be Crohn's?

I've been on Salofalk enemas and granules, Colifoam enema and high dose prednisolone, all without any response - we are considering escalating to Humira or even infliximab, which is a bit daunting only three weeks after diagnosis. My faecal calprotectin level prior to treatment was 299, so not excessive but still indicating fairly active disease.

Any advice would be very welcome

The_Conductor

Inca- it does sound like your consultant is progressing matters in a fast and efficient manner.
Unfortunately- there isn't a one size fits all approach that works for IBD- it really boils down to you sitting down with your consultant- and figuring out what works for you. Even then- what works for you today- may not work for you in a few weeks time- unfortunately- its a journey, a lifelong journey.

What I normally do at this stage of inflamation- is, in conjunction with medication- try to use a low/no residue diet- its boring as hell, but if you're not transitting through your intestinal tract- it gives it a bit of a break. A lot of the consultants have dieticians on fast-dial- to sit down with Crohn's and Colitis patients and come up with a dietary approach to supplement the medical approach.

Unfortunately- it is the case that you're going to have to find out what works for you- hell, some of the food that I manage- would hospitalise others- whereas others with colitis or crohns- whereas I'm also on a rather high dose of various medications etc.

Talk to the consultant- no idea who you have- but they seem to be on the ball. Feel free to vent at us here- we all know what you're going through...........

inca2

Thanks so much for your reply and reassurance. We sat down yesterday and had a good chat - thinking of electively admitting me next week for iv steroids if the oral steroids are still not helping and then progressing to a biologic if that makes no difference. While it's very daunting, I'm so glad that he is on the ball enough not to delay unnecessarily. I'm on pred just over two weeks now and no relief whatsoever - just insomnia and a ridiculous appetite - so it is frustrating. I'm also sticking to a mostly vegan diet and to avoid all "inflammatory" oils such as palm oil so I'm hoping that that will make some difference. I've tried FODMAP restriction a couple of times and couldn't pinpoint any triggers. Also doing my best stress-wise as that must have a massive effect. Thank you again.

patnor1011

I was told that I do have Crohn's over 6 years ago and can't really say what food is bad for me as it changes every time. My Crohn's seems to have its own mind and it is being triggered by different things. I gave up trying to figure out what not to eat - I stopped junk food as it is not healthy even for a healthy person but apart from that I do eat pretty much everything. I guess I am lucky, I just do have a small bit of whatever and if there is no pain I do have more, sometimes much more
I do have some turmeric and cayenne every day.

c00shyk

Hi everyone. Im only new to this forum.

Like rest of yous I am also diagnosed with Crohn's (Oct 2016). My consulatnt have tried few drugs from that time but I feel different every week. At the moment Im on the Humira every 2 weeks, Pentasa and Budenofalk 3x a day. I was doing well until I had MRI and I was given a contrast which caused flare up. Still trying to get back to the form I was before MRI.

Keep up good faith and all I can say it takes time with all these meds to kick in but then you see good effects.

tinimc

hi everyone,
just wondering what foods do you normally eat when having a flare up/cramps etc. I'm on infliximab and have had a blood test last week to see if i'm still tolerating it as i've been on them for 10 years and i'm constantly tired and drained and in the last 2-3 weeks i've started to get cramps and not much diarrhaoe more mucas (sorry for tmi) . but i'm booked in for a scope Friday week also. I'm also on salofalk and galfer iron tablets. haven't had a flare up in years so slightly wary of all the results i'm going to get. Also any advise on the moviprep. Haven't had this one before (had kleen prep and refused to take it this time). when do I start it and whats anyone's advise. I'm raging as i'm off next thursday and friday as my smallie is starting school. So not sure now if i'll be able to collect him on Thursday at 12.30 or my other boy at 3? Friday will be out anyway as i'll be in hospital. anyway sorry for long post/rant. any advise is welcome.

pitifulgod

Had a long few weeks, ended up having my second flare. My first was in 2010 so it was a bit like I never had it. Wasn't even on medication. Ended up fainting a few days ago after leaving hospital. Got a blood transfusion. My new gastroenterologist is great and very nice though so I feel like I'm prepared for routes of treatment etc. Just can't wait till I'm done with steroids.

patnor1011

http://www.medicaldaily.com/medical-marijuana-achieves-complete-remission-crohns-disease-drug-improves-247783

I noticed this past week. It was actually my son and wife who found it as I kind of resigned and try to live with my condition. Perhaps there is some hope for us.

akelly02

Hi guys, looking for info on this disease.

Does everyone who has it need a bag?

Can symptoms disappear for months on end ? A

Any information would be helpful

Thanks

pitifulgod

akelly02 wrote: »

Hi guys, looking for info on this disease.

Does everyone who has it need a bag?

Can symptoms disappear for months on end ? A

Any information would be helpful

Thanks

Not everyone needs a bag, only occurs as a result of surgical procedures if it becomes unmanageable. Symptoms can disappear for prolonged lengths of time. Eg mine disappeared for years.

Qreq

akelly02 wrote: »

Hi guys, looking for info on this disease.

Does everyone who has it need a bag?

Can symptoms disappear for months on end ? A

Any information would be helpful

Thanks

There can be periods of remission (symptoms lessening or disappearing) depending on the case. Dietary changes and medication may suffice depending on the case. The HSE link below states, "An estimated 80% of people with Crohn's disease will require surgery at some point in their life." This, and further information on the disease, diagnosis, treatments, etc. can be found at:

Irish Health Service Executive
https://www.hse.ie/eng/health/az/c/crohn's-disease/

Irish Society for Colitis and Crohn’s Disease
https://www.iscc.ie/facts

Mayo Clinic (American)
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

akelly02

pitifulgod wrote: »

Not everyone needs a bag, only occurs as a result of surgical procedures if it becomes unmanageable. Symptoms can disappear for prolonged lengths of time. Eg mine disappeared for years.

Thank you very much

akelly02

Qreq wrote: »

There can be periods of remission (symptoms lessening or disappearing) depending on the case. Dietary changes and medication may suffice depending on the case. The HSE link below states, "An estimated 80% of people with Crohn's disease will require surgery at some point in their life." This, and further information on the disease, diagnosis, treatments, etc. can be found at:

Irish Health Service Executive
https://www.hse.ie/eng/health/az/c/crohn's-disease/

Irish Society for Colitis and Crohn’s Disease
https://www.iscc.ie/facts

Mayo Clinic (American)
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

Thanks a million

Gael23

So my journey is just beginning after a year of issues.
Ive been having loose movements with mucus in them for over a year. Then developed fatigue but that comes and goes and pain in my upper right side
Today a colonoscopy found inflammation in several areas of my large bowel. I have been put on Mezavant 4.8G daily and am waiting to see a GI doctor. I am taking biologics already for Psoriasis so this may be reducing symptoms.

I have enough medical issues to write a book about so I'm not frightend or anything. Its more konger term stuff like avoiding a Colostomy and my ability to hold down a full time job thats concerning me just now.

patnor1011

I do not even register pain associated with my Crohn's. I mean occasional pain very localized on upper right or bottom left part of my belly is something I got used to. It is sort of early warning of what food does not sit well with me at that moment of time. This changes a lot and there are foods which are ok for quite some time and then they create a problem only to be good again after the flare.
What gets me the most is fatigue. That constant feeling of tiredness and being weak is what I hate.
A colostomy is not the worst thing in a world and it actually improved my life if I can say so - so long summer swimming and a few other things... I do have full-time job and there is no problem to hold one with colostomy unless you do some hard manual labour. There is a big risk of a peristomal hernia with a colostomy. I got one and about 2 months after they surgically repaired it I managed to tear up another one in the same place again. I still do have it for the last 12 months and will have it repaired again but apart from it being little painful at a times, it is not that big of an issue.

Gael23

Fatigue was one one those symptoms that I’d been having and I never put it all together until yesterday. I put it down to the Enbrel injections and being physically active. My doctor previously advised me to have a high fiber diet but now it looks like I need the exact opposite - which is only going to make the diorrhea worse. Fybogel was helping me have much firmer stools but that’s out now too.
On the colostomy, I know if it will save your life then there is no choice but being a man I would find it rather undignifyng. That said i know a woman that got one to save her life and it turned things around amazingly, not just saving her life but give it a new quality of life.
In terms of work I’m just thinking of the need for regular doctors visits and hospital admissions for scopes and things. I’m under five different doctors at this point. A few are just once a year but others more often

The_Conductor

Is anyone here on Stelara for Crohns? I've gone through Infliximab and Humira- but keep developing antibodies to the various biologics- and am now about to start Stelara- and am increasingly worried that my list of possible options is narrowing the whole time.......... The infliximab and Humira- worked for a couple of months- before they just stopped working for me altogether (I'm also on Imuran to try and minimise possible reactions). Any ideas of what I might encounter with Stelara?

Corkblowin

Gael23 wrote: »

On the colostomy, I know if it will save your life then there is no choice but being a man I would find it rather undignifyng.

The 'being a man' thing is an odd comment.

I think you just need time to come to terms with it. I had an Ileostomy when I was 28 and thought it was the end of the world. While it can be annoying at times (ironically its not a pain in the ass!!) my quality of life improved immeasurably. I didn't need to worry about being close to a loo at all times and I was pain free. Energy levels rose and I was able to get back playing sports and exercising. It also didn't hamper dating etc which was a concern I had at the time. A real bonus I had was that I was able to come off all medication.

If its the right thing to do and the doctors recommend it, I'd seriously consider it.

Good Luck.

Gael23

Corkblowin wrote: »

The 'being a man' thing is an odd comment.

I think you just need time to come to terms with it. I had an Ileostomy when I was 28 and thought it was the end of the world. While it can be annoying at times (ironically its not a pain in the ass!!) my quality of life improved immeasurably. I didn't need to worry about being close to a loo at all times and I was pain free. Energy levels rose and I was able to get back playing sports and exercising. It also didn't hamper dating etc which was a concern I had at the time. A real bonus I had was that I was able to come off all medication.

If its the right thing to do and the doctors recommend it, I'd seriously consider it.

Good Luck.

I know your right and if it’s the difference between serious suffering or even life saving then it’s a no brainer. The thought of doing my business in a bag will take some time to come to terms with, but I’m a whole away from that I think.

OEP

The bag is not nearly as bad as you would imagine it to be. I had no choice, in that, my first ever flare up resulted in my whole large intestine being removed and I now have an ileostomy. Going from not having ever had symptoms of crohn's to 3 weeks later not having a large intestine was a shock, but I was pleasantly surprised at how normal a life you can lead with a bag. I've been back playing contact sports, been travelling in developing countries, skiing, surfing, swimming etc. There is literally nothing I haven't been able to do. I am not self conscious, so that certainly helps. People don't care anyway, the most you get is curiosity, but once you explain it to them they don't care. I never had to experience the side of crohns that means you need the toilet a lot, extreme fatigue and that, so I can't compare but I can only imagine the quality of life is so much better with a bag.

essgee268

What are the typical Side effects of Humira that users are experiencing

Northern Monkey

The main side effect I had initially was fatigue. For the first couple of months I was wiped out for 2 days after taking the injection. Since then it’s been life changing, I’m a different person and the only down side I have is I seem to get a cold that lasts for weeks on end every winter.

woodzie

I was diagnosed with Crohn’s after becoming very ill last July. After many weeks in hospital and getting second opinions I finally got diagnosed and was started on humira and imuran. They have been life changing and my Crohn’s was under control after about 8 weeks. The only side effect I’ve seen is that I get lots more colds and I’ve put on quite a bit of weight. I’m a bit worried about taking them long term as I don’t like the idea of suppressing your immune system. Has anyone been able to manage their Crohn’s without medication.

essgee268

thanks. on it 3 years has been brilliant bar 2 small flares the last 2 months of FEB. took injection yesterday morn and felt Fatique and dizzy for rest of day

The_Conductor

essgee268 wrote: »

What are the typical Side effects of Humira that users are experiencing

Extreme tiredness for around 2 days after the injection.
I'm no longer on it though- as I developed antibodies to it (which isn't supposed to happen with Humira- but did in my case). Ditto the infliximab- developed antibodies- and now on Stelara.