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Ulcerative Colitis
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Posted 6/2/2016 10:08 AM (GMT 0)
Hi Everyone,

I hope you all are doing good..

From 1st Mar 2016, I had a heavy chest pain, and on blood test, found Immunoglobulin of 1138( very high). Was prescribed antibiotics like Clavam 650mg ( 3 times a day) for 7 days. I left smoking and drinking for that period. Soon, after my chest infection was okay, I used to have 3-4 times bloody stool a day, with no abdominal pain or cramp . Then, I went for colonscopy and was diagnosed with Ulcerative Pancolitis, as termed by my doc after colonoscopy results, on 29th Mar, 2016. I started with Predmet (16mg) once daily, Mesalamine (1.2g) twice daily. Then after 2 weeks, Predmet reduced to 8mg, and then 4mg to have alt days with new addition of Azothioprine (50mg) once daily. Doc said to stop Predmet after 10 more and Azothioprine and Mesalamine to continue with same dosage. Now, I lost 6kgs of weight from 66kgs to 60kgs, there is abdominal cramps after heavy eating, and then diarrhea. Also my appetite has increased. Want to know from you all, that are these changes are normal or not? Also, I am assuming, because of high Immunogobulin, my immune system was disrupted and caused this. I am worried , whether I will regain my weight or not? I already left smoking and not drinking at all. Also, in a strict diet, with no oil, spices etc. Now, there is no blood (2 times stool a day), but sometimes there is diarrhea, rarely mucus blood comes ( a flare ). Doc said to continue this medicine for 10 years. Not sure, taking a medicine everyday, may impact my other organs like Liver etc. Recently I did a blood test of Haemoglobin and it was okay. Did anyone experience the same things?

I am worried should I consult another doctor as my current doc is not saying things clearly. I heard pancolitis is very serious, and symptoms are severe. But in my case, I dont have severe symptoms..

Your suggestions will really help me to get a clearer idea..

Rgds
Anirban
Posted 6/2/2016 11:05 AM (GMT 0)
Azathioprine can cause you do lose your appetite. I was very nauseous when I started on it the second time. The dosage of 50 mg doesn't seem to be much. I'm surprised your doctor said you'll be on it for 10 years. True, mesalazine is a safe drug but for Azathioprine, your tolerance has to be proven first. You'll have to have regular blood work done to check on your liver. Either way, being on medicine for a very long time sounds reasonable. It's a chronic disease therefore you may need to take meds every day.

I had pancolitis twice in my life and I couldn't walk upright... It all depends on the severity of the inflammation itself.

You could get a second opinion but I think that the next GI will tell you almost the same.
Posted 6/2/2016 11:46 AM (GMT 0)
Thank you very much Andrina..

Also want to know on this weight loss things. I lost 6 kgs in these 2 months. There is no other weakness as such, but suspecting some eye problem. Now, if I look onto something for a long time, there's a mild headache. Checked my eye, and got -0.75 power on my right eye with cylindrical..

Do you know is eye related to UC? Also will I regain my weight..

Rgds
Anirban
Posted 6/2/2016 12:38 PM (GMT 0)
Many of us have been on azathioprine and mesalamine for decades without issues, they're safe long term maintenance medications for uc. You need a maintenance medication for life, not just 10 years. Your medications can't cure you of uc, they only treat your symptoms. Stop those medications and your symptoms return.

Loosing 9 kilograms (20 pounds) is common with a bad ulcerative colitis flare. So, your 7 kilogram loss isn't as bad as it could've been. The weight can be regained once your symptoms improve. If you're at 2 bms a day, then increase your calorie intake and you should be able to regain your lost weight. Eat large meals, have extra healthy snacks. Often weight gain is slow.
Posted 6/2/2016 5:14 PM (GMT 0)
Thank you so much for your suggestions...I wish I gain weight, then I will feel some confidence...

Also, my doctor said, I can eat everything, but less oil and spices. But, in these 2 months, I have listed down few things which probably gave a bad flare. Though not sure, whether its the only reason..
Cakes or pastries ( even a small bite), big gap between meals, abdomen cramps with heavy meals, Noodles, outside snacks. etc..

Does a flare means bloody diarrhea or only diarrhea? because, now almost there is no blood..though sometimes, I see blood mucus..very little though..if I had pastry, or outside food..

I can predict a diarrhea with a bad sound in abdomen. Also to observe, the days when I am not taking predmet 4mg, I have 3 bms a day, and when I take predmet 4 mg, only 2bms. Doc said to stop predmet after 10 more dose. So, is there a chance of my symptoms coming back..

Can I smoke and drink occasionally? Any rule to follow, when I am doing this..

Rgds
Anirban
Posted 6/2/2016 6:48 PM (GMT 0)
Anir, can you tell us what country you are in? I know it is a steroid and can present with many side effects, one of them being an increased appetite, another being decreased muscle mass.

Have you finished taking the Predmet (methylprednisolone)? It definitely does help to decrease your bowel movements, the trick is to make sure you slowly stop it. You are at 4 mg now, for ten days? Or every other day?

When you slow it down or stop taking it, you may have a return of symptoms, sometimes just for a few days until the other drugs you were prescribed take over. You may also experience mood swings.

Many people with UC do have gluten intolerance, so it sounds like you should try to skip the noodles, cake and pastries. Do you have problems with other grains like rice? Many try cutting out grains for a time or eating low fiber foods.

And yes it is very hard for many of us to regain lost weight after a flare. Eat less oil like your doctor said but eat plenty of "healthy" fats: avocado, fatty fish, nuts, eggs. It is better to eat many small meals and no heavy meals for a time. Once you are in remission you will begin to regain weight.

Yes you can smoke and drink occasionally. Many people develop UC after they quit smoking, myself included! It really depends on your over all health.

A flare can include all or any symptoms at a time: urgency, pain, frequency, diarrhea, mucous and blood to name a few. Frequency is my first symptom, then urgency, diarrhea, pain, mucous and blood. But it is different for each person.

I hope you get well soon!
Posted 6/2/2016 6:54 PM (GMT 0)
A flare is a persistent worsening of symptoms. A flare can give you mild, moderate, or severe ulcerative colitis symptoms. A mild flare might include more bowel movements and more urgency than what is normal for you. Flares sometimes, but not always, include blood.

There's no rules on what you can or cannot eat for all UC patients. It's very individual. Some uc patients are lactose intolerant, gluten intolerant, and have known food sensitivities. They avoid certain foods that bother them. It's a process of trial-and-error to see what foods bother you. Eliminate a food, reintroduce a food and see if something truly bothers you. I have no food restrictions, nothing bothers my uc (except very spicy food or excessive alcohol).

There's no rule about smoking and UC. Certainly, it's not a healthy habit to have. Some who quit smoking, and then got uc, find it helpful to smoke again.
Posted 6/3/2016 10:03 AM (GMT 0)
Hi, I stay at Kolkata, eastern part of India. I am taking 4mg now for every alternate day, and 9 more are left So, 21st June, I will stop Predmet. You are right, I have reduced body mass mainly from my hips and shoulders, arms. I can see the difference, when I stand in front of mirror..

My all plans are stuck due to this. I have a plan to do my master study, already got admission, but my mother and wife are really nervous of my trouble. They are not saying "NO" directly, but when I give them some hint of me not going, then they all of a sudden becomes very happy, and start saying philosphical things, that first health and then dreams or goals. Then I get mood swing, and sometimes get rude, fight with my wife, say something to mom, which is very unusual of me. I never used to do all this before. Sometime, I feel, I am getting physchological. And surely, that day, with stress, I get a flare, and upsets me again..

Anyway, thank you all for taking out your busy time, and helping me with your kind suggestions..

So, may be I can try to start smoking slowly, and see, if I get remission..



Rgds
Anirban
Posted 6/3/2016 2:07 PM (GMT 0)
Try to be patient until after you've finished the steroids, it might be a period of weeks after that until you feel "normal" again. I'm sure your mood swings are because of the steroid--maybe you can explain that to your family and ask them to understand. Maybe, if you need more time to heal, you can postpone until next semester? You may also be lucky and finish the steroid and go straight into remission.

It's important to try not to stress. Prayer and meditation can help, or just concentrating on your breath, or doing something you enjoy.

If I was a young person I probably would have gone back to smoking to prevent another flare but I am an old lady--65, with already lung problems. I wish you speedy healing.
Posted 6/4/2016 7:11 AM (GMT 0)
Thank you so much for your kind suggestions..I also wish you a speedy recovery..

I ate some spicy food yesterday night and watched movies till late and already 3bms since morning..

Rgds
Anirban
Posted 6/4/2016 7:34 PM (GMT 0)
Sorry to say Hi here...
Good that you found this forum ..

From our experience - I would suggest you to take this diagnosis seriously and do everything to get into remission. Sometimes along with meds one has to incorporate supplements , probiotics, diet changes and life style changes to attain remission.

Anti inflammatory diets that helped many- SCD diet, Paleo diet, low food map diet, Gaps diet. Browse net and figure the best that suits ur life style

Being in India - Avoid commercial Milk and dairy products . But if you can-get local grass fed cow / goat milk and make yogurt and try.

Spices - including turmeric, chilli, corriander powders- Do not use packaged branded ones . They have colors / dyes added which irritates your already inflamed colon. Use home dried/ powdered ones . Also Turmeric has lots of benefit if it's pure.

Do not eat bakery products until you reach a strong remission.

Best wishes ..
Posted 6/6/2016 9:42 AM (GMT 0)
Hi All,


I have 6 more Predmet (methylprednisolone) (4mg) left to take for alternate days.

Today, I did not take it and feeling good. Only 1bms a day. Can I stop the 6 for the time being and see how it goes? I don't want to take steroids anymore.

Any suggestions?

Rgds
Anirban
Posted 6/6/2016 10:47 AM (GMT 0)
Take it as prescribed, a proper taper is important.
Posted 6/6/2016 3:03 PM (GMT 0)
It's important to stop slowly so your own hormones learn how to re-boot. It's a fairly low dose you needn't worry. I'm glad you're feeling better!
Posted 6/6/2016 3:51 PM (GMT 0)
Hi,

Just returned from office, got fresh, started reading a book, and had a small meal..everything was okay. Now suddenly felt a bloating feeling in stomach and went to toilet. Again it's diarrhoea with some thin blood with mucus. I have seen this, my stool falls in the water and it looks like some thread. Looks to me some mucus..

Any idea? Had 2 bms today till now..


Rgds
Anirban
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