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Crohn's Disease Forum » General IBD Discussion » Looking for some advice on cramping and dealing with UC


12-01-2017, 05:27 AM   #1
Sara47
 
Join Date: Dec 2017
Looking for some advice on cramping and dealing with UC

Hi,

Newbie here so apologies if this post is a bit waffly!

I was diagnosed with UC in August, although my GI believes that I have had it for years, and given symptoms I'd had, that could well be. I currently live in Macau and am having a lot of difficulty getting any advice or information at all. After I had my colonoscopy my GI came in and told me that I had UC. I wasn't told to come back or return for another appointment. Once I had gotten over the general anaesthetic we realised that this was probably something that we needed to do, so managed to arrange an appointment with her.

She speaks only Chinese and we have to use a translator to get any details, and this can be difficult at best. I wasn't told what the disease was, or what it meant, nothing.

I was put on 3 x 1mg Pentasa suppositories, 4 x Lacteol Fort and 4 x Duspatalin. She also gave me a combo of Flupentixol / Melitracen but I didn't take this as I suffer from depression and read that there could be bad side effects. I was asked to come back in 2 months. When I did, she reduced the Pentasa to one a day and took me off all the other meds. She then said I would need to be on the Pentasa for 3 years and to come back and see her in a year.

I decided to keep taking the lacteol fort as I had read online that this was good as a probiotic and I also started taking Florasix Iron and Vitamin tablets.

So the Pentasa definitely helped. Before then it was basically mucous and very loose. Now my BM are soft formed for the first time in years. But I have noticed a difference from when I started on them to now. At first I would have a BM every morning and usually just one or two. Now I am having sometimes 3 or 4 a day or none at all. Then the cramping returned. Sometimes in the middle of the night, sometimes after food. This last time has lasted for 4 days of sporadic cramping.

What I would really like to know (if there is even an answer to this?!) if I get a cramp, is it likely from something that happened just before it, say food or stress? Or can it come a few hours after food or stress? It's just that I'm trying to keep a food/emotional diary to see what triggers me, but I just don't know if I should be looking right before the cramping or awhile before - does that make any sense?!

I am also suffering from pretty bad agoraphobia at the moment due to a couple of near accidents, and obviously the stress isn't helping with the urgency - such a vicious cycle! I take diazapam and xanax when needed to try and help with this. I am also in therapy for various other reasons, but we are trying to deal with this too. Does anyone have any advice how I can get out of the apartment without freaking out? I have a pack I put together for emergencies, but I just don't even want to leave the house, and I never used to be like this before.

I'm just feeling so lost. I saw back home in the UK there is a Crohns and Colitis group, toilet cards, leaflets and so much more, here there is nothing and the Dr just doesn't seem interested at all. When my husband called her telling her that I was in terrible pains due to the cramps, she told me to go and visit the local GP - they hadn't even heard of colitis!!!

Anyway, so sorry to go on, hopefully someone might be able to help, so I can try and see what is setting me off. I knew nothing about this disease before, and understand how other people/friends just think I have an upset tummy and I'm just making a fuss... but boy, is it worse than they think! Not as bad as some obviously, but not want anyone wants to have either.

Thanks!
12-01-2017, 11:14 AM   #2
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

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Hi and welcome to the forum.

It sounds like the Pentasa is not enough for you and that your symptoms are getting worse. If possible, you should consult with the doctor again to let them know that things are not improving, that in fact they are getting worse. The longer you wait, the longer it will probably take to get things under control again.

As for the cramping question - it can happen at any time from my experience - keeping a food diary is a great idea, to help see if there is anything that affects your more/less than others.

If possible, print out osme information on UC to take with you to the doctor, any doctors these days SHOULD have heard of UC/Crohns'!
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-05-2017, 01:43 PM   #3
Scopey8
 
Join Date: Dec 2017
Hi,

Newbie here so apologies if this post is a bit waffly!

I was diagnosed with UC in August, although my GI believes that I have had it for years, and given symptoms I'd had, that could well be. I currently live in Macau and am having a lot of difficulty getting any advice or information at all. After I had my colonoscopy my GI came in and told me that I had UC. I wasn't told to come back or return for another appointment. Once I had gotten over the general anaesthetic we realised that this was probably something that we needed to do, so managed to arrange an appointment with her.

She speaks only Chinese and we have to use a translator to get any details, and this can be difficult at best. I wasn't told what the disease was, or what it meant, nothing.

I was put on 3 x 1mg Pentasa suppositories, 4 x Lacteol Fort and 4 x Duspatalin. She also gave me a combo of Flupentixol / Melitracen but I didn't take this as I suffer from depression and read that there could be bad side effects. I was asked to come back in 2 months. When I did, she reduced the Pentasa to one a day and took me off all the other meds. She then said I would need to be on the Pentasa for 3 years and to come back and see her in a year.

I decided to keep taking the lacteol fort as I had read online that this was good as a probiotic and I also started taking Florasix Iron and Vitamin tablets.

So the Pentasa definitely helped. Before then it was basically mucous and very loose. Now my BM are soft formed for the first time in years. But I have noticed a difference from when I started on them to now. At first I would have a BM every morning and usually just one or two. Now I am having sometimes 3 or 4 a day or none at all. Then the cramping returned. Sometimes in the middle of the night, sometimes after food. This last time has lasted for 4 days of sporadic cramping.

What I would really like to know (if there is even an answer to this?!) if I get a cramp, is it likely from something that happened just before it, say food or stress? Or can it come a few hours after food or stress? It's just that I'm trying to keep a food/emotional diary to see what triggers me, but I just don't know if I should be looking right before the cramping or awhile before - does that make any sense?!

I am also suffering from pretty bad agoraphobia at the moment due to a couple of near accidents, and obviously the stress isn't helping with the urgency - such a vicious cycle! I take diazapam and xanax when needed to try and help with this. I am also in therapy for various other reasons, but we are trying to deal with this too. Does anyone have any advice how I can get out of the apartment without freaking out? I have a pack I put together for emergencies, but I just don't even want to leave the house, and I never used to be like this before.

I'm just feeling so lost. I saw back home in the UK there is a Crohns and Colitis group, toilet cards, leaflets and so much more, here there is nothing and the Dr just doesn't seem interested at all. When my husband called her telling her that I was in terrible pains due to the cramps, she told me to go and visit the local GP - they hadn't even heard of colitis!!!

Anyway, so sorry to go on, hopefully someone might be able to help, so I can try and see what is setting me off. I knew nothing about this disease before, and understand how other people/friends just think I have an upset tummy and I'm just making a fuss... but boy, is it worse than they think! Not as bad as some obviously, but not want anyone wants to have either.

Thanks!

Hi I think its hard to find a trigger sometimes a reaction could happen straight afterwards or several hours after eating. If the pain does get wose I would go to an A&E and not suffer. Not sure if you need to pay for treatment though. I would keep going back until your pain-free. I phoned the crohns and colitis support group who were very helpful maybe you could give them a call and hopefully offer advice?
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