Learning to Live with Crohns Disease

[Cozmo]

Hello Crohns Family :ghug:

I'm really pleased to have discovered this site, I no longer feel so alone with this strange disease.

It all started 8 years ago when I was rushed to hospital gastric heamoraging. I was given an endoscopy and diagnosed with gastronitis and put onto Lansaprazole. This seemed to keep me fairly balanced and steady until this year. I started getting so so ill with abdominal inflammation and high levels of inflammation in my blood. I got a diagnosis of Crohns Disease on the 15th November 2012 after a colonoscopy (I'm still waiting for the full biopsy results to get back) Since then I have started on Predislone steroid reduction and the Pentasa and things have definitely improved a bit, but it does feel like there's more going on (my body has not been producing semen for months now, and that was way before meds). I have low hemoglebin blood cells, B12 and Iron deficiencies. I've got an MRI scan with the Rheumatoid specialist on 18th Dec. I'm also booked in to start seeing a Gastroentologist soon. I'm basically hoping to get a clearer picture of what is actually going on and (like all of us) want to get back to living as normal a healthy life as possible. Reading through some of your posts it makes me feel that this may definitely possible.

I've been able to maintain my work with only a few days off here and there so far but it has prooved difficult at times. I like to meditate a lot and I'm supposed to be going to India for a couple of months next march and april but don't really know how I stand with that at the moment. Food wise I can't see it being a good mix with Crohns. The foods I'm most comfortable with is white bread and potato. Whenever I branch out a bit with food I have ended up suffering as a consequence. I used to love running long distance but have had to put that on the back burner for now. I am just starting with gentle runs while I'm feeling ok.

Thank you all for being here, and thank you to the moderaters and people who do service that help keep this wonderful site going :ghug:

 

[Pirate]

Cozmo, Welcome to the Forum. I also went a long time trying to get a diagnoses with Crohns. Not as long as you. I also suffer with Iron deficiencies, B12 and low Hemoglobin counts. Usually my hemoglobin usually comes up when I get my iron infusions.
Travel can be a stressful time for a Crohnie because of the food issues. There may be others here that have been to India that may help with ideas.
Good luck with your upcoming test and hoping you get a really good GI.

 

[SarahBear]

Hi, Cozmo! Welcome.

I'm glad you're starting to feel better. That's probably the steroids - the Pentasa hasn't had time to kick in yet. You get to look forward to feeling even better when it does!

As for your trip, you might want to talk to your GI and see if there's anything they can do to try to make sure you're feeling good by then. You might also want to check out the Diet, Fitness, and Supplements forum. You might be able to find or ask for tips on eating while on a trip like you're planning.

I hope everything goes well for you!

 

[shalinico]

Hello Crohns Family :ghug:

I'm really pleased to have discovered this site, I no longer feel so alone with this strange disease.

It all started 8 years ago when I was rushed to hospital gastric heamoraging. I was given an endoscopy and diagnosed with gastronitis and put onto Lansaprazole. This seemed to keep me fairly balanced and steady until this year. I started getting so so ill with abdominal inflammation and high levels of inflammation in my blood. I got a diagnosis of Crohns Disease on the 15th November 2012 after a colonoscopy (I'm still waiting for tjhe full biopsy results to get back) Since then I have started on Predislone steroid reduction and the Pentasa and things have definitely improved a bit, but it does feel like there's more going on (my body has not been producing semen for months now, and that was way before meds). I have low hemoglebin blood cells, B12 and Iron deficiencies. I've got an MRI scan with the Rheumatoid specialist on 18th Dec. I'm also booked in to start seeing a Gastroentologist soon. I'm basically hoping to get a clearer picture of what is actually going on and (like all of us) want to get back to living as normal a healthy life as possible. Reading through some of your posts it makes me feel that this may definitely possible.

I've been able to maintain my work with only a few days off here and there so far but it has prooved difficult at times. I like to meditate a lot and I'm supposed to be going to India for a couple of months next march and april but don't really know how I stand with that at the moment. Food wise I can't see it being a good mix with Crohns. The foods I'm most comfortable with is white bread and potato. Whenever I branch out a bit with food I have ended up suffering as a consequence. I used to love running long distance but have had to put that on the back burner for now. I am just starting with gentle runs while I'm feeling ok.

Thank you all for being here, and thank you to the moderaters and people who do service that help keep this wonderful site going :ghug:

Hi there, just read post on ur plans of coming to india......just curious to know if you want to try any alternate treatment like ayurveda or homeopathy? If so, have u fixed an appt? As I am from India, do let me know if I can help u in any way....

 

[afidz]

Hello and welcome!
In light of what Sarahbear said, you might be well enough, maybe even remission by the time that trip comes along that food might not even be an issue. I'm glad to hear that the steroids are working, when do you start tapering off of them?

 

[Cozmo]

Hi, Cozmo! Welcome.

I'm glad you're starting to feel better. That's probably the steroids - the Pentasa hasn't had time to kick in yet. You get to look forward to feeling even better when it does!

As for your trip, you might want to talk to your GI and see if there's anything they can do to try to make sure you're feeling good by then. You might also want to check out the Diet, Fitness, and Supplements forum. You might be able to find or ask for tips on eating while on a trip like you're planning.

I hope everything goes well for you!

Thanks Sarahbear. I've browsed through the Diet Fitness and Supplements forum. I think the Safe Foods thread is really useful. I was going to add to it but I'm still doing a lot of trial and errors with food so I'll wait until I'm a bit clearer. Thanks again... hope everything goes well for you too!:hug:

 

[Cozmo]

Hi there, just read post on ur plans of coming to india......just curious to know if you want to try any alternate treatment like ayurveda or homeopathy? If so, have u fixed an appt? As I am from India, do let me know if I can help u in any way....

Thanks Shalinco... I would consider anything! Especially some of the alternative therapies, as I'm starting to feel like a pharmaceutical disposal bin at the moment! If I do manage to go ahead with the trip I'll be sure to be in touch :hug:

 

[Cozmo]

Hello and welcome!
In light of what Sarahbear said, you might be well enough, maybe even remission by the time that trip comes along that food might not even be an issue. I'm glad to hear that the steroids are working, when do you start tapering off of them?

Hi afidz. I've just read up a bit more about remission, it does make me feel a little hopeful, although, I think there's a bit more to be sorted before I get to remission stage. I've started tapering off the steroids at 5mg a week. I started on 30mg. I was supposed to be dropping down to 20mg this morning but wasn't quite ready, will try again in the morning, just have to see how I feel. Thanks again :hug:

 

[Cozmo]

Cozmo, Welcome to the Forum. I also went a long time trying to get a diagnoses with Crohns. Not as long as you. I also suffer with Iron deficiencies, B12 and low Hemoglobin counts. Usually my hemoglobin usually comes up when I get my iron infusions.
Travel can be a stressful time for a Crohnie because of the food issues. There may be others here that have been to India that may help with ideas.
Good luck with your upcoming test and hoping you get a really good GI.

Thanks Pirate. Your blood situation sounds similar to mine. I think I'll be asking Doctor about the possibility of Iron Infusions, are they given IV? I can't stomach the oral supplements. The Doctor has said that the GI he has refered me to is supposed to be good... so here's hoping Thanks again:hug:

 

[Pirate]

Yes, my iron infusions are IV. They take about an hour- hour and half. I usually do a series of 3. 1 per week for 3 weeks.

Good luck

 

[Cozmo]

Hello Crohns family,

I'm up in the night flaring a bit so it feels right to give a bit of an update as so much has happened since I wrote this thread 10 months ago.

I found I was unable to come off prednisolone, the pentasa wouldn't hold me. I started Azathioprine but reacted badly with a rash,nausea and pain in my lower back. I was admitted to hospital for 3 weeks and diagnosed with aortitis after a CT scan. They started me on 12 weeks of IV anti-biotics, but to no avail, the last CT scan I had showed no change.

I have managed to come off prednisolone after 8 months and am just getting by with Co=Dydramol and Pentasa for 4 months, but for how much longer I'm not sure. My gastro was looking at starting me on methotrexate and I had another colonoscopy last week, still waiting to hear any results.

Good to be back onthis forum.

Thank you all for being here :ghug:

 

[highlandsrock]

Hi Cozmo

Just read you're original post. I'm curious to know if you ever made it to India? I have an acquaintance who suffers from UC and she went on an historic motorbike ride around India a couple years back. I admired her determination but it did seem a little foolhardy.

Is the aortitis linked at all to the Crohn's? There seem to be many different complaints that appear alongside Crohn's, probably as a result of a dodgy immune system. Good luck with the antibiotics and the results from your colonoscopy. Keep posting

 

[Cozmo]

Hi Highlandsrock,

I didn't make it to India as I'd got too ill, the 3 weeks in hospital came just after I was supposed to have been there, so not going was definitely one of my wiser decisions in life(even though it was my ill health that made the decision).

Yes they are definitely connecting the aortitis to the Crohns disease, although they say it is very rare for this to happen :confused2:

I have finished the anti-biotics now but there hasn't been any change with my aorta. Which apparently means it is less likely an infection and more likely the cells of my aorta flaring, risk of aneurism being the main concern.

Thanks for your post. It's great to see you getting by without any Crohns medication :hug: