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09-12-2013, 04:55 PM   #1
HorseLover!!
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Not doing good on aza

How long do you have to be on this med before it starts to stop working? or does it vary for different people?

I've only been on aza for 8 maybe 10 months now first off for the first 4 month it did the job but now I'm starting to think it's stopped working .
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Had my first Colonoscopy and Endoscopy at age 2 1/2 years old

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Previous: Prednisolone and Pentasa slow release, Had tube feeding at age 3, Azathioprine

Currently in a flare but not taking any medication because doctor hasn't bothered to prescribe anything

My HORSE is not just a HORSE, he is my SANITY, my HAPPINESS, my THERAPIST and my BEST FRIEND


09-13-2013, 01:16 AM   #2
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I'm pretty sure that each medication varies for different people. I did take aza for a bit though and it seemed to start working for me pretty fast. I was taken off it though before it could have a chance to stop working. I hope you'll find one that'll work well for you. Sending hugs your way. Xxxx
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09-13-2013, 05:12 AM   #3
HorseLover!!
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I'm not really sure what to do whether I stop taking but I don't think I can do that without my doctor saying that it is ok to do that, but if it's stopped working then what's the point of me still being on it? anyone know what I should do? should I carry on with it until my next appointment with my doc??
09-13-2013, 11:36 AM   #4
ce1210
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depends on when ur next appointment is, but I wouldn't just stop taking it without at least talking to your doc or a nurse first, from my understanding stopping aza suddenly can have some negative side effects and it may be helping more than it seems. You could stop it suddenly and end up in the ER....
09-13-2013, 11:51 AM   #5
SarahD
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It's possible to flare whilst on Aza, and it's also possible for it to stop working. If you have an IBD nurse I'd give them a ring and they'll probably organise some blood tests to check your inflammatory markers. If not you could ring your consultants secretary, or speak to your GP? It's probably best to catch things before they turn into a full blown flare.
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09-13-2013, 12:28 PM   #6
HorseLover!!
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It's possible to flare whilst on Aza, and it's also possible for it to stop working. If you have an IBD nurse I'd give them a ring and they'll probably organise some blood tests to check your inflammatory markers. If not you could ring your consultants secretary, or speak to your GP? It's probably best to catch things before they turn into a full blown flare.
I've been flaring for 4 months now but it's only getting worse, my IBD nurse never answers the phone or she comes up with an excuse as to why she can't talk to me , so the only way I can get hold of her is via email so I will try that or I might ring my GP, every time I ring my consultants secretary they always say that they cannot talk right now he's "busy", I am still trying to change to a different gastro.
09-13-2013, 12:48 PM   #7
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I've been flaring for 4 months now but it's only getting worse, my IBD nurse never answers the phone or she comes up with an excuse as to why she can't talk to me , so the only way I can get hold of her is via email so I will try that or I might ring my GP, every time I ring my consultants secretary they always say that they cannot talk right now he's "busy", I am still trying to change to a different gastro.
He should be able to ring you back even if he can't talk with you at the time when you call. I hate doctors and nurses like that, flares ups can happen at any time, not just around appointment times, so doctors and IBD nurses should be willing to help us at any time. If you've got a while to wait for your next appointment they should also be able to offer to see you sooner. I hope you manage to find someone to help, don't be afraid to keep pestering them until you get the help you need - and contacting your hospitals Patient Liaison Service, if it has one, may help if you find you're not getting anywhere.
09-13-2013, 01:09 PM   #8
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Thank you SarahD I will do my best to carry on pestering them, he never calls me back so I gave up trying to get hold of him .
09-13-2013, 01:40 PM   #9
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Horselover,
Have you tried drinking "Whole Leaf Aloe Vera Juice" ?
or taking a strong probiotic with at least 25-50 billion cultures.
Another thing that has helped me to minimize flares and stay pain free is selective eating. When you have a flare up that day look at what you have eaten or drank. Then try to eliminate them and see if you still have problems.

These foods have caused me to go into a full blown flare:
Coffee, any animal Milk even lactose free Milk, store bought Orange Juice, greasy foods, fast foods.

I'm not familiar with your situation but I tried 2 different meds and they didnt help me and made me sick, so I went the natural way, but it is not easy.
The greatest benefit is that it actually works if you remain faithful for the most part. You will start feeling better.
09-13-2013, 01:46 PM   #10
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Thank you SarahD I will do my best to carry on pestering them, he never calls me back so I gave up trying to get hold of him .
I'd been going downhill last year and left message after message for my consultant. After a month I called again and had an argument with the consultants secretary over the phone, she was really rude actually but all I wanted was to get the help I needed and deserved, and I was fed up of calling in every week and getting nowhere and in the mean time getting sicker and sicker. In the end I put in a complaint to the Patient Liaison Service, and lo and behold my consultant called me the same afternoon. She's been great at calling me back ever since if I've left a message for her, and she's also changed her secretary too - the new one is so much more helpful If you really do find you're not getting the response you need from the doctors and nurses and it's been a reasonable amount of time I wouldn't hesitate to make a complaint. I hate to make a fuss but sometimes you have to put your foot down, for your own sake.
09-13-2013, 02:16 PM   #11
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I'd been going downhill last year and left message after message for my consultant. After a month I called again and had an argument with the consultants secretary over the phone, she was really rude actually but all I wanted was to get the help I needed and deserved, and I was fed up of calling in every week and getting nowhere and in the mean time getting sicker and sicker. In the end I put in a complaint to the Patient Liaison Service, and lo and behold my consultant called me the same afternoon. She's been great at calling me back ever since if I've left a message for her, and she's also changed her secretary too - the new one is so much more helpful If you really do find you're not getting the response you need from the doctors and nurses and it's been a reasonable amount of time I wouldn't hesitate to make a complaint. I hate to make a fuss but sometimes you have to put your foot down, for your own sake.
Thanks I will do everything I can until I get the help that I need, yeah I really don't like making a fuss either but I will definitely try and if not then I guess I will have to put in a complaint.
09-13-2013, 02:23 PM   #12
HorseLover!!
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Horselover,
Have you tried drinking "Whole Leaf Aloe Vera Juice" ?
or taking a strong probiotic with at least 25-50 billion cultures.
Another thing that has helped me to minimize flares and stay pain free is selective eating. When you have a flare up that day look at what you have eaten or drank. Then try to eliminate them and see if you still have problems.

These foods have caused me to go into a full blown flare:
Coffee, any animal Milk even lactose free Milk, store bought Orange Juice, greasy foods, fast foods.

I'm not familiar with your situation but I tried 2 different meds and they didnt help me and made me sick, so I went the natural way, but it is not easy.
The greatest benefit is that it actually works if you remain faithful for the most part. You will start feeling better.
Hi Avery, I have had to eliminate foods before but the think is it didn't work because I had to eliminate pretty much everything I ended up in hospital because I couldn't eat anything because it would just make me vomit not stop after and I had constant pain after eating as well, I'm also scared of trying probiotics because of my previous encounter with them lets just say that it really didn't work for me. I have never heard of whole Aloe Vera juice before, What's it like??
09-13-2013, 07:29 PM   #13
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Well I must tell you that when I was bleeding and having problems that the 50 billion probiotics "Critical Care" completely fixed all of that within 2 days. I noticed it in my bowel movements very quickly. Studies have shown that it does help people with digestive disease. The probiotic I use has many good reviews. If you want to know I will tell you but I don't want to sound like Im promoting any specific products.
The Aloe Juice is basically watery and a little tangy but not bad. I have been using Aloe for over 20 years for Crohn's. I do not take any medications. The particular product I used has had some studies done on it showing that it boosts immunity and helps certain vitamins to be absorbed in greater amounts.
When I had major pain from a flare the aloe would take the pain away within the hour.
Keep in mind that I am very careful as to what I eat and the pain only came when I ate something that I should not have. It is hard but it is attainable.
09-16-2013, 11:20 AM   #14
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Probiotics have really helped me sry to hear u had a bad experience but u may wanna give it another try as they have helped me tremendously...also going to an all liquid diet of nutrient pack shakes and smoothies has really helped me, I just eat 1 solid meal a day, also medical marijuana helped me, don't know if its an option for u...
09-16-2013, 12:45 PM   #15
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HorseLover, The liquid diet that ce1210 mentioned, really does work because your intestine is inflamed and has a stricture or closed up, so solid food passing through can be very painful. That is usually what causes the most severe pain. I used to eat baby food for a few days, when I was in a flare. It was suggested by a nutritionist.
Another quick way to relieve the pain is to use Milk of Magnesia which softens the food so it can pass easier.
Aloe Vera juice has help me in the past to help bring down inflammation and relieve pain. It is not instant but takes about a half hour or less for me.
Also you really should give the probiotics a try. It has to be a strong probiotic with 25-50 billion cultures or you will not see much effects immediately. I also keep it refrigerated since some are sold that way.
09-16-2013, 01:42 PM   #16
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Aloe Vera juice may be helpful but you need to know that it is a laxative and could worsen your condition. The reaction varies from person to person.

It should not be taken at the same time as medication since the laxative effect may cause the meds to be flushed through the system too fast for absorption.

Finally, Aloe vera interacts with Methotrexate, a commonly used CD medication so you should not ingest aloe vera if you are on Methotrexate.

Regarding the use of probiotics, this is something it would be wisest to discuss with your doctor. There are thousands of kinds of probiotics and not all of them are necessarily safe for people with CD to take.

This meta-analysis of 6 studies (link below) concluded that one kind of Lactobacillus was actually associated with an increased rate of relapse and another kind appeared to have no effect one way or the other.

http://www.ncbi.nlm.nih.gov/pubmed/19220543
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09-16-2013, 03:10 PM   #17
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Patricia56,
I have been using Aloe Vera for over 20 years as the main treatment for Crohn's. It has only benefited me in helping to maintain fair health & to remain off of prescription medications.
I tried the Rx route and the Meds were causing me to feel sick on top of dealing with Crohns, so I choose the natural route.

I also did not need any studies to verify that my bleeding stopped within a few days of using the strong probiotics and Aloe Vera.

It is very disappointing when I see someone trying to deter people suffering with Crohns from trying something that actually can help them without the side effects.

Any of the side effects of Methotrexate are definitely more dangerous than trying Probiotics or Aloe.
If I continue to drink milk and coffee and eat greasy foods, I would still be sick. Regardless if I was taking probiotics or aloe.

the Study does not mention if the majority of those people in that study were carefully watching their diet. Also the study was based only on the L. rhamnosus strain GG bacteria & L. johnsonii bacteria

The product I use contains 10 different bacteria cultures amounting to 50 billion cultures.
The study did not list how much probiotic cultures the subjects were given.

There are other studies to suggest that probiotics are beneficial to having a healthy Digestive tract, after all isn't that where Crohn's is located and that is where good bacteria already exist.

http://www.sciencedaily.com/releases...0331142221.htm

http://www.sciencedaily.com/releases...0131153246.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3749555/
This is an excerpt from the above listed link. From the same source that you listed
8. Conclusions

Gut microbiota plays a crucial role in triggering, maintaining, and exacerbating IBD. Specific microbes can be overrepresented in IBD while others seem to be protective. A decrease in microbial biodiversity has been found in mucosa and feces of IBD patients, together with an increase of fungi.

Pre- and probiotics could represent a valid armamentarium to modulate gut microbiota and, probably, to cure IBD. Current evidences, however, show a clear clinical efficacy of some families of probiotics only in pouchitis and ulcerative colitis but not in Crohn's disease. This efficacy has been prevalently associated to mild disease and seems to have a better role in maintenance of remission compared to induction of remission.

Further studies are necessary to better characterize the exact role of probiotics in IBD, their specific mechanisms of actions, including a direct effect on mucosal homeostasis or healing. Since probiotics are becoming a legitimate therapeutic option, it is necessary to determine which probiotic strains have the greatest efficacy, whether they are more effective alone, or in conjunction with other pro- or prebiotics, and what is their half-life in the gastrointestinal tract. On the base of these data, frequency of administration and dose could be exactly calculated.

I personally chose to try something that might work with little or no side effects and it did work for me.
09-17-2013, 12:27 AM   #18
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You have read a great deal into a few simple statements. Nothing I said was incorrect nor did it dismiss your results as invalid. I did not criticize or condemn any of the advice you offered.

I simply offered some cautionary points which are well established in the medical literature.

I think it is especially important for people considering Aloe Vera to know that it interacts with Methotrexate don't you?

As for probiotics all I said was that he should consult his doctor because just picking something off the shelf can have negative effects. I offered a single study of lactobacillus strains as an example. As the quote you included says

Current evidences, however, show a clear clinical efficacy of some families of probiotics only in pouchitis and ulcerative colitis but not in Crohn's disease.
09-17-2013, 11:23 AM   #19
ce1210
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consulting with a doctor never hurts, just don't take everything they say to be doctrine...I asked my doc about probiotics and he told me not to waste my money, so I stopped them and within 48 hrs was beginning to have uncomfortable bowel movements and within another 48 hrs blood so I know they work for me, I also know that I have even less symptoms when Itake much larger doses of probiotics. I take 100 billion 3x a day along with natural foods and drinks that contain live and active cultures, never tried aloe vera juice bc I cant find it around here but am going to try that at some point. But the liquid diet def helps in the short term.....and checking for interactions with meds is always a good idea.
09-18-2013, 04:16 PM   #20
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I get the Whole Leaf Aloe Juice online in a gal. and it is a savings from the local store.
The company I use have independent lab studies available online of how it helps the body to absorb more vitamins with the whole Leaf version. It does not have any studies for IBD.
If their studies are legit, they show that somehow the Aloe aids in the digestive process in a positive way enabling the body to assimilate certain vitamins at a greater rate.
I have never had any bad effects from using Aloe Vera & I have been using Aloe for over 20 years. Aloe has only helped to minimize the symptoms of Crohn's.

I have always weighted everything that the doctor has suggested & considered all the options. With the internet today there is enough info out there to educate someone with crohns on what the options are, that have shown to be successful for some.
I was not aware that there were "drug interactions" with aloe, since it is in the category of a food item.

I was not able to locate any information about a "drug interaction" between Aloe and Methotrexate. I did see a long list of other medications that supposedly have a "moderate interaction". They all said that Aloe increases the effects of the drug. that might seem to agree with the study I mentioned earlier above.

My very close relative was prescribed many different medications over the years for different issues.
When I looked up to see if there were any drug interactions between them. I found that there were major drug interactions between them, that could even cause death. When I inquired about it, I found out that it was considered "normal" practice to prescribed those same medications in that combination.

It would be to any ones benefit to ask a lot of questions before submitting to any form of treatment by a medical doctor, since they are not always looking out for our best interests it would seem at times.

Another very close relative of mine has been a pharmaceutical Rep for many years.
He actually acknowledged that many doctors do not know enough about the medications that they prescribe to their patients. Either they have too many patients to keep up with or they don't always read enough about the meds that they prescribe.
I know there are good doctors out there but they are hard to find and for anyone suffering with Crohn's they should get a second opinion before submitting to any treatments.
09-20-2013, 07:59 AM   #21
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Hi guys just a bit of an update, I went to see my doctor yesterday-his secretary finally rang to say he wanted to see me, so I did go anyway and he said that this is a follow up from my dietician only because when I went to see her I mentioned that I'm having trouble swallowing, pain after eating and my bowels aren't emptying properly, so anyway my doctor said that he's going to get an x-ray of my throat- I have to drink some barium for that and he want an x-ray of my stomach. great more appointments as if I don't already have enough going on
09-20-2013, 10:19 AM   #22
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Im glad you managed to get in to see your doctor. I know having more tests isn't fun but hopefully they'll be able to show what the problem is so that it can be treated. Feeling unwell all the time can become a way of life for Crohnies, but it doesn't always have to be the case. I hope they can sort things out for you.
09-20-2013, 10:43 AM   #23
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Im glad you managed to get in to see your doctor. I know having more tests isn't fun but hopefully they'll be able to show what the problem is so that it can be treated. Feeling unwell all the time can become a way of life for Crohnies, but it doesn't always have to be the case. I hope they can sort things out for you.
Thanks SarahD Feeling unwell all the time for me is definitely a way of life for me because I haven't yet managed to get into remission properly yet so I'm hoping that when that time comes I will actually know what it feels like
09-20-2013, 11:35 AM   #24
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Until my latest flare I never knew it could be so difficult to reach remission, but I certainly know how you feel now. I've forgotten what normal feels like...Hopefully remission is just around the corner for us both!
09-20-2013, 11:40 AM   #25
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Until my latest flare I never knew it could be so difficult to reach remission, but I certainly know how you feel now. I've forgotten what normal feels like...Hopefully remission is just around the corner for us both!
It is really hard, but yeah like you said hopefully it is just around the corner
09-21-2013, 11:22 AM   #26
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hey horselover, I def feel ur pain on the endless doc appointments I'm ab 3 months into my 1st flare and I have been feeling like remission is this delicate, fleeting thing. I'm afraid to say the word out loud as I may scare it away
But, alas, staying positive (which is at times the hardest thing in the world to do) and finding joy in very small mundane everyday things is keeping me from completely losing it and head butting my GI doc when he looks me in the eye and says that my liquid diet and probiotics are a waste of time and money and I need to accept my fate and jump on the biologics bandwagon. I really hope you find relief soon! don't give up and feel defeated! we can't let the crohn's win!
09-21-2013, 11:46 AM   #27
HorseLover!!
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hey horselover, I def feel ur pain on the endless doc appointments I'm ab 3 months into my 1st flare and I have been feeling like remission is this delicate, fleeting thing. I'm afraid to say the word out loud as I may scare it away
But, alas, staying positive (which is at times the hardest thing in the world to do) and finding joy in very small mundane everyday things is keeping me from completely losing it and head butting my GI doc when he looks me in the eye and says that my liquid diet and probiotics are a waste of time and money and I need to accept my fate and jump on the biologics bandwagon. I really hope you find relief soon! don't give up and feel defeated! we can't let the crohn's win!
Thanks ce1210 I'm definitely trying to stay on the positive side, hoping that remission is just around the corner but after being in a flare for 5 months now I'm starting to doubt that it's going to happen I feel the same way about wanting to completely lose and head butt my GI when I'm sat in his office telling him what is going on and he's looking at me like 'what' then sends me out like I'm a complete waste of his time I've just got so many other things going on at the minute and I don't need him and this disease getting in my way! The NHS are driving me mad at the minute but I'm still trying to stay on the positive side of things
09-21-2013, 01:19 PM   #28
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Hi horselover

Just wanted to say that I feel for you and hope you make a speedy recovery.

I'm currently on aza after my first major fare and been on it for 10 months now. It has certainly made me better than I was this time last year and although I still get the odd grumble, I have to try and stop myself from thinking it's a set back. Being on medications like this I guess you put some faith into it and hope it works indefinitely. There will probably be a day when my body gets immune to it but trying not to think about that.

The barium test wasn't too bad as I recall and it gave us the results we needed to decide which direction to go and what medication would be best.

Chin up and sending you best wishes.
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09-21-2013, 02:06 PM   #29
HorseLover!!
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Hi horselover

Just wanted to say that I feel for you and hope you make a speedy recovery.

I'm currently on aza after my first major fare and been on it for 10 months now. It has certainly made me better than I was this time last year and although I still get the odd grumble, I have to try and stop myself from thinking it's a set back. Being on medications like this I guess you put some faith into it and hope it works indefinitely. There will probably be a day when my body gets immune to it but trying not to think about that.

The barium test wasn't too bad as I recall and it gave us the results we needed to decide which direction to go and what medication would be best.

Chin up and sending you best wishes.
Thank bettyboop12 I will try and keep my chin up, I'm not looking forward to the scope going down my throat because the last time they did that I vomited and then blackout completely, drinking the barium and then having an x-ray I don't mind that.
09-23-2013, 08:42 AM   #30
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just got scheduled for a barium swallow and endoscopy myself...apparently taking up to 60 mg of Prilosec a day and still having to eat tums when ur on a low acid/mostly liquid diet and drinking nothing but 9.5 ph water is not normal my GI is suspecting that crohn's may be affecting my stomach or esophagus? dunno...but not looking forward to the camera down the throat either

Good luck dealing with the NHS by the way horselover...at least they aren't sending u 3 bills a day in the mail ;-)
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