HealingWell
Search Close Search
☰

Messed it up....

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/31/2013 1:07 PM (GMT 0)
Hi everyone,
I am into 4th month of my first flare up.
And 3 months into 5-ASA treatment.

To be honest, I had largely controlled my symptoms after re-joining my job.
No Blood, No Pain, controlled bowels. In short Stable for a period of one month
with just 2 medications
6.6 g of Balsalazide(Balacol in India) and 1 VSL3 cap everyday.
(I had even started to taper down to 4.2 g/day with no issues]

But last week, I forgot to bring Balacol to my workplace[5 days a week, away from home]
and had to get Mesacol(Roughly Asacol) which I had for 4 days.

On 5th Day itself I noticed traces of blood in mucus.
And by this Monday, the all to familiar cramps came up.

I am not sure whether I was in remission or not...

Really feeling awful, after experiencing the cramps again.
They are gentle, but they remind you -"Buddy You are not healed"

Latest update is I have lost 9 Kgs in 4 months, thanks to fat free and reduced carb diets.
I had no issues with normal Indian food, apart from Tomato.

Even half cup of Tea a day wasnt doing any harm whatsoever.
Sweets ocassionaly.

But I had no idea that I would forget my meds at home, have Mesacol,
and end up flaring[read bleeding] again.

I am back to full dosage for the last 5 days, but I am really wondering
just 4 days of missing your meds can do this thing to you....
Posted 7/31/2013 2:05 PM (GMT 0)
The constant flow of medication helps tame the beast so it's no surprise that you started having symptoms again. Has the bleeding and cramps stopped?
Posted 7/31/2013 2:33 PM (GMT 0)
Cramps are still there, they come and go. Bleeding is minor...
Posted 7/31/2013 5:36 PM (GMT 0)
Your colon can get healed but it will never be cured, ever. A lot of people confuse healing and remission with the thought that "you are fixed". In order to stay "fixed" you have to continue with the meds, forever. If you don't then at some point you will be back to square one. It's just a matter of whether it will just be a few days, a few weeks, a few months, or a few years. Never stop the meds, ever, because future flares often get harder and harder to treat.
Posted 7/31/2013 6:40 PM (GMT 0)
I'm going to suggest you also get a rectal retention enema medication. Mesalamine would be the best bet to start.

Basically, Balacol isn't going to deal with the rectum, and the change in meds tells you that things aren't doing so well.  


If you do add the enemas, hopefully you'll get back on track now that you're back on the Balacol.

q

Posted 8/1/2013 12:27 PM (GMT 0)
@garylousville,
well I know its difficult for most of the people, But during this short duration, I have come across so many people within my friend and relative circles who have been all but free of symptoms on minimal or no meds.
One of them is my aunt who was advised surgery but got saved just by having raw papayas. That thing didnt work on me. These people are as good as healed, and its a plain fact May every colitis is not ulcerative and people do get better and literally forget that they even had this problem...
Posted 8/1/2013 12:56 PM (GMT 0)
You are quite foolish to stop your uc maintenance medications for any reason. The history you gave us quite clearly says "when I stopped my meds I got worse"; reread it yourself. That backs up the medical doctrine for this disease. As gary said this is a lifelong disease that doesn't go away; is never cured so you need your medications no matter how good you are feeling.

I mean you do understand the basic mechanisms of how your medication and uc work, right? Your immune system is attacking the lining of your large intestine and that causes inflammation. Your uc medications contain a chemical compound known as meslamine which is an anti-inflammatory medication. As the casing of those pills dissolve in your large intestine (based on PH) the medicine is released and it reduces your inflammation. Your immune system never stops this attack. So, if you stop taking your medication then the inflammation will build up over time. Maybe you might get away without your medication for a few days, weeks, or perhaps a month but the inflammation will build up until have a uc flareup (when the inflammation is so bad it causes blood, mucus, and urgency of bms). The length you can go really depends on how aggressively your immune system is attacking your large intestine and the amount of active disease you have.

No amount of tea, raw papayas, or magic pixy-dust will cure you. The only thing close to a cure for uc is surgery (they remove your large intestine which is what your immune system is attacking) but that is no walk in the park and caries risks and complications. I think we all wish we could forget about uc but it has a way of rearing its ugly head no matter how much we try to forget.
Posted 8/1/2013 1:25 PM (GMT 0)
Thats the issue iPoop, most people just feel that its a life long illness.
thats not the case with everyone. Its just the mindset, that if i need meds to keep going...

Read Again, I dint stop my meds, I missed my meds, regular ones, for 4 days(left the pouch at home).
So what did i do?
Unlike USA, we dont need prescrips for evrything, And I asked for Balasalazide, which the pharmiscists didnt have at that time, so I asked for any mesalamine, and he gave me Mesacol.
i had mesacol for 4 days. Thats it, I never stopped my meds. Back at home, I got back to full dosage of Balsalazide.

I never had issue with Gluten, read wheat, In fact i still have almost the same amount in my diet.
I never said that Tea is going to cure you, I said Tea with milk created no issues to me.

Yes I flared, n docs over here are in India not foolish enough to start off with enemas and preds straight away.

And to be very precise, my Biopsy ruled out IBD, still I have symptoms close to UC.

Just because one has suffered for a considerable length of time, dosent mean He has done a Phd in UC.

And if thats reasearch read again - Immune System is a probability and not a certainity.

Thats why ***** drugs like Immuran etc dont work for some people.

How do you explain that???

Dont go by the book, and read into peoples experiences
The genesis of this disease is different in different geographies.

It dosent affect the asians in the same way as it effects the western community.


Read a clinical research of Benaras Hindu University, when a set of over a 100 people were treated
with Just Yoga and Ayurvedic medicine - with no western MEDICINE
How come those people reached remission without your so called meds.

The first line of treatment is of course anti-inflammtories.
Then we have alternative medicine.

I am at my first line of treatment.

And I can give a personal experience.

I had cystitis infection last year. After recovering from a bout of Gentamycine,
I had problems with frequent urination for over 8 months.
And one fine day I had 'Triphala' powder (ayurvedic supplement) for constipation/diarrhea

within one day my urine got normal, I had no isssues whatosver.

Yupp, Just as you said, no magic powder' right. But man, it was like a magic thing for me.

What meds had no answer for, was cured from root by a normal Indian meds.

Be positive and tell people that there is a solution to this and never go by the book.
Posted 8/1/2013 1:28 PM (GMT 0)
Missing a dosage of your medication is just like stopping them.

Wow what a trip, believe what you like I guess. I think in the end, reality has a way of catching up with you no matter what your soap box philosophy might be.
Posted 8/1/2013 1:47 PM (GMT 0)
Exactly... If I go by definition Mesacol releases mesalamine into blood stream
While as my med Balacol releases a %age of mesalamine in colon after a length of time.

I missed balacol, but I had Mesacol.
So I never stopped meds...
And thats a bare fact, no philosophy...
Posted 8/1/2013 1:54 PM (GMT 0)
Lol okay I'll just take the word of some anonymous person on the web and throw out all of western medicine and just order me some of those sweet indian roots. Uc has been researched for more than 50 years here, there are lots of scientific studies done on the various medications. I'll back science and research over this any day
Posted 8/1/2013 2:00 PM (GMT 0)
search comphunk.. on web and you will have the anonymous person on the web.

And you will come up with a guy who is an expert at one of the largest software exporter of the world, and creates websites that anonymous people on the web can put their medicinal comments upon.

And for gods sake... take out the fun factor....
There is no 'replacement' for western medicine....
There are options, and its just a question of what suits you best...

And dont take my word for it.. Carry on with your horror drugs that your insurance covers..
Posted 8/1/2013 2:03 PM (GMT 0)
So a LOL from my side as well.
UC is researched from 50 years in western sciences agreed,
Ayurved has listed down colitis a 1000+ years back.

I have utmost regard for western medicine, but i guess you dont gave a darn dime for alternative meds.
Posted 8/1/2013 2:08 PM (GMT 0)
I just don't discount anything. For me, I will always take my meds, as I seem to be in a constant simmer no matter what I do....but I will still try. I def. think it is a smart policy to always take the meds...esp. if they are low risk such as mesalamines etc.... However, (and I am not saying to do this) my friend has UC since she was a teen (now in her 50's). She went over 10 years w/ no meds and no special diet etc... and was totally fine UC wise. THis is so amazing to me. If it is true that immune system is constantly attacking than why was she fine for all those years?

However, like the ugly beast that UC is...she did eventually flair during a very stressful situation in her life and went back on her asacol/enemas. So my point is...everyone is different, and I think we all have to learn our own thing. I would just say that if you do try to go off meds..pls be on the lookout for early flair symptoms (extra gas, constripation etc....) and than start the meds asap. I am confused however...did you mention that you do not have IBD and just colitis? IF so it may be a whole different animal. Just my 2 cents.
B
Posted 8/1/2013 2:23 PM (GMT 0)
Exactly hateuc...

I really dont understand this Immune System theory, does it go to sleep when one attains remission, some people even return their regular supply of meds. People taper down their regular meds, and eventually they come to zero sometimes.
And as u said, dosent hold true for evryone.

I am also carrying on my meds, after all they are the ones that brought me relief and kept me symptoms free. Being a strong advocator of alternative meds, I have taken ayurvedic supplements, I cant say they worked for me or not. since i took them during the time of relief.

Yes, my biopsy ruled out IBD.. It said infectious, but all my symptoms are 90% similar to UC.
Except the fact that diet is not a issue for me, apart from a couple of things....

Infact I had some fine bowel motions , when I was getting treated for IBS by my physician initially.
Posted 8/1/2013 2:42 PM (GMT 0)
Look I am not sure what you are trying to get out of this. We are here to offer you advice and if you don't need it then why are you here? I don't care if you are the largest software exporter or a janitor; it doesn't matter. "Ayurved has listed down colitis a 1000+ years back" well colitis has been around a long time and I am sure you can go back just as far in medicine in many cultures and things were tried (like blood letting) doesn't mean they were right by any means. It was from a time before the scientific model and before microscopes and so much of modern instruments to really quantify things. In your first post you said "I am back to full dosage for the last 5 days, but I am really wondering just 4 days of missing your meds can do this thing to you...." to which many of us said don't stop your meds. Later you contradicted yourself and said you didn't stop your meds. You tell me you trust western medicine, there is no replacement for it, then you tell me to take my horror medication. You are full of contradictions, you don't make any sense. Whatever, I am blocking you because this is pointless.
Posted 8/1/2013 2:54 PM (GMT 0)
You do know the difference between colitis and Ulcerative colitis yes? Colitis can be cured and as of date UC can not. Sure it can be controlled and maintained, whether its from meds, diet, supplements what have you. They really don't know what causes it and to be honest I don't think they ever will. There are just too many variables. For some of us, I do believe in the AI connection because we do respond to immune suppressors and biologics. But there are also some out there that do not. It may be that theirs is not AI related.

IBD is such a mystery that there is always going to be the eternal debate and cures and whatnot. Honestly, I don't care. As long as one can manage their symptoms thru whatever means necessary is what counts. If you want to believe in a cure, go for it.
Posted 8/1/2013 5:55 PM (GMT 0)
I agree with Red. There is a difference between Colitis and UC. They are like comparing apples with oranges. Comphunk seems to be talking more about infectious colitis where this is a UC forum. You can't apply the same laws and principles to UC that you believe about Colitis. They are two seperate things. Once you have been diagnosed with UC, and that diagnosis is accurate, it isn't just going to go away by eating raw papayas.
Posted 8/1/2013 8:40 PM (GMT 0)
just want to clarify one thing regarding your chumpmunk comments...

Mesacol isn't a systemic medication and isn't delivered into the bloodstream.
All mesalamine oral medications are enteric coated (either to be released in the small intestine, terminal ileum or colon.

You don't have a definitive diagnosis it seems.

We do know what we're talking about regarding medications, and your being here goal is highly questionable.

Although some are up for an argument, I personally don't care about what you do other than needing to clarify the point about the mesacol.

q
Posted 10/3/2014 2:47 AM (GMT 0)
This is my father hispathology findings.
Colonoscopic biopsy shows fragmented colonic mucosal tissue which displays focal disarrays of glands
and cellular debris in superficial crypts.No cryptitis /crypt abscess are seen.No granulomas /atypia seen

Non Specific colitis.No evidence of IBD/Malignancy in biopsy.
He had loose motions frequently and did had some bleeding for a day which has stopped now .
Also hes a psychiatric patient.
i need to know the seriousness of the disease.
Since right now hes been prescribed mesacol od .
The amount of loose motion has reduced but the frequency hasnt
and he do go many times and come back.Can i know how does this disease cause.

Right Now hes on medication of Mesacol OD,Biogest,Deplazacort
Posted 10/3/2014 2:08 PM (GMT 0)
You should start a new thread on this.

It looks like there is some acute colitis, of unknown reason. But they seem to have ruled out IBD, which included UC

Not sure the UC folks will have much to offer.
✚ New Topic ✚ Reply