Ulcerative Colitis- Please Help!

Hi,

It's such a relief to find this site and hear from other people in the same boat! My partner's been hospitalised several times and been on a variety of different tablets for UC. So more recently he's been trying a few different things. So far Aloe Vera juice has been fine, the hospital were fine about him taking this along with his medication and although it's early on the first signs are positive. The other thing we've been reading about is 'slippery elm' - there's limited research into this, but I'd recommend 'Googling' it.

The one thing I have read and am cautious of is reducing absorption of other oral medication - so would suggest leaving several hours between taking aloe vera/slippery elm and any oral med.

HornofPlenty referred to the Specific Carbohydrate and the book 'Breaking the Vicious Cycle' - we've had success with this, but it has been very hard to stick to, but potentially well worth it!

I don't think there are any miracle cures or quick fixes to get into remission, but my partner's gone back to work today, so we'll just have to see.

Good luck and keep in touch

Nick Nack

Hi to everyone who posted experiences. I'm new to all this. I had trouble about 6 years ago and was referred for a Colonoscopy. Nothing was found that could explain my symptoms and it was recommended that I could have Irritable Bowel Syndrome. Things improved and were sort of hit and miss then, except this last six months I've started with problems again, different to my last ones. I saw my GP a week ago and she rushed and she got me an urgent appointment for a Sigmoidoscopy on my lower bowel area. I know it's not as bad as the Colonoscopy (hated that), but I'm in constant pain this last week and feverish with general ill health and awful symptoms, so I'm expecting them to find something this time. My mum had polyps removed and so have other relatives, so it could just be an obstruction caused by that, but I have this nagging feeling that it's either Crohns or Colitis. Naturally, I don't want it to be either. I don't think it could be Cancer, as I've not eaten meat since I was 5 years old and don't smoke, hardly drink and keep fit regularly eg: 3 times a week at least. I have been losing weight gradually over the last 9 months, but through diet change and it's been a slow steady loss and i've had to really try hard to lose a pound a week. However, this last month, I've noticed I'm losing weight much easier and hardly exercised as I've been under the weather. The symptoms are worse first thing in the morning and late afternoon/evening. I have the investigation on Monday and will keep you posted, but I'd value your replies and am grateful for the advise posted, should I indeed have anything to worry about. Thank you to you all.

I had uc for a few years and i was on steroids I even had 5 pnts of blood

given to me in hospital as I had lost so much through bleading.That was 12 years ago, and then i had my large bowel removed and it was the best thing i ever did I had a bag for four months and then I had it reversed.I have had a normal life since then I maybe go to the toilet 3 to six times a day but I have no pain it is great

I briefly scanned through the various entries and the experiences were rather familiar.

I started suffering from UC in 2004. Over three months it got very bad very quickly. They tried various medications but I kept loosing weight and needed a series of blood transfusions. Black days indeed.

In the spring of 2005 my consultant told me that he was referring me to a surgeon for a colostomy and I reluctantly agreed. However, a few days later he contacted me and suggested that I might be offered a trial treatment with infliximab (Remicade).

Infliximab is a \"biologic\" drug that is given via an infusion every eight weeks or so. It modifies the way that the body's immune system works. Rather than let me explain how it works, I suggest you research it on the net.

What I do know is that it has changed my life when nothing else made a difference. For the last couple of years I have led a completely normal life and I have only experienced very mild symptoms from the disease. I no longer have to plan journeys around toilet visits, I have no embarrassing episodes and I feel virtually as fit as I did before I was ill. My experience is not unique. I know this trreatment has had an equally profound impact on the lives of the others I have met who were prescribed it.

Apparently infliximab does not work for everyone and the NHS will only offer it to certain patients if other (cheaper) treatments have proved ineffective. Like all medications, there are some possible side effects but, for most people they are relatively minor - particularly compared to the disease.

I believe that the numbers being prescribed this medication are increasing rapidly. If you are still having major problems, before considering radical surgery with its associated risks, I would at least ask your consultant whether he or she considers that the drug would suit you. If you are unhappy with their response, as my consutant always reminds me, I would seek a second opinion.

With regard to diet I find that avoiding too much sweet and starchy food helps. One of the worst things is bread. I also find that very high fibre foods are also best minimised.

Please bear in mind that I am a chartered surveyor, not a doctor. Therefore the above just outlines my own experience and some of the details may be inaccurate. So do your own research. and good luck!

If you are Male and under the age of 35 :

DO NOT TAKE INFLIXIMAB/REMICADE.

Not for UC or Chrons or even Arthritis.

There is a chance (10/10000) to develop a rare type of lymphoma which has a documented 80% fatality rate within 1 year, some cases the patient was dead before the results of there actual diagnosis was established.

The disease has a male preference and only strikes younger individuals. In hindsight i was young and sick (chrons) and also being pressured by family to take this.

[quote:22aa70192c=\"N/A\"]If you are Male and under the age of 35 :

DO NOT TAKE INFLIXIMAB/REMICADE.

Not for UC or Chrons or even Arthritis.

[/quote:22aa70192c]

Of course, the risks of this drug are a concern. Unfortunately, the decisions one makes in life are rarely clear-cut. Everyone needs to do their own research. They should also seek the advice of their doctor. Working for the NHS in the UK, my doctor has absolutely nothing to gain personally from prescribing this treatment. The NHS discourages due to its cost. It is for each person to weigh up the pros and cons and what is right for one will not necessarily be right for another.

For me, the only alternative besides infliximab (Remicade) was radical surgery - and that carried its own significant risks. The other drugs simply did not work. Even if they did, they also had risks and side effects.

Maybe Infliximab should not be the default treatment of choice but, for me, it was the least worst option. If next year someone comes up with a cure or an effective diet that is effective and free from side effects and risks, I'll be first in line.

Hi.

Try joining the IA (The ileostomy and Internal Pouch Support Group). They have a discussion forum which is brilliant! :D :D:D

I had severe UC for 3 years and then decided to have my large intestine removed. I now have an internal pouch which was made from my small intestine. This forum is ace for all your questions answered and a sympathetic ear.

C u there XXX

i am 60 and have had U C since 15 !!

I was on SALAZOPRYENE for years which worked well.

I tried Homeopathy for a period and was given LICOPODIUM in high strength and it worked for some time but took a while for any positive effect to manifest.

But gradually the effects wore down and i reverted to salazopryene.

i,ve lived without any medication for about 12months now but am trying BETHNESOL.

see my note with regard to LICHEN PLANUS

I hope this is of interest to anyone who suffers from the problem

Hi everyone

I was diagnosed with crohn's disease 9 years ago and have since been on varied doses of prednisolone. I am currently on 10mg a day but every time they try to wean me off it i end up having a major flare up. As i have taken it for 9 years without a break i have developed osteoporosis in my hips and spine, steroid induced diabetes, high blood pressure, depression and have just been diagnosed with kidney stones and an ovarian cyst. I am in catch 22 at the moment but i am sure the prednisolone has caused more problems than it has helped. I am also on asacol high dose but i cant get off the steroids and it scares me that eventually they will stop working for me altogether. The shorter time you are on steroids will be much better in the long run.

Mm xx

I was diagnosed with Ulcerative Colitis in 1984, and have been on sulfasalazine (500mg x 2 three times a day since that diagnosis, recently increased to x 3 three times a day. I've had 'the usual' problems for the past couple of years which have recently got worse, but apparently the condition is not in 'flare up'. So what is causing it? I also have thinning hair and itchy skin and a rash, but my GP didn't seem to want to pursue the rash... which I felt sure was to do with the drug but had no proof.

I was recently given a month's course of the steriod 'Clipper' which did nothing at all for me (except make me more bloated, (which I now am having trouble getting rid of even though I've joined the local gym...).

When I asked my GP and the consultant at my local hospital, neither seem keen to change my medication. I wonder what experiences other UC sufferers might have had with this drug?

Get on an organic diet or at the very least eliminate GMO's from your diet. As much as possible avoid processed foods, dairy, wheat, soy, eat as much raw fruits and vegitables as possible. Buy a juicer and a nutri bullet and juice vegitables and make smoothies with ingrediaents like flax seeds, goji berries, raw unfiltered honey and other super foods like cocoa nibs. Buy organic aloe vera Gel (In the suppliment section at whole foods market) And drink 2oz every morning on an empty stomach when you wake up. Drink chia seeds in water daily. Put your feet in the grass for at least ten minutes a day (Its called grounding or earthing research it). Do a dr. floras colon cleanse. I have been doing these things for almost a year I went from being on steroids, imuran, hospiatals, pain meds to almost being totally cured.

I hope you are feeling better. My mom had a severe episode of UC several years ago and could have died. She changed her diet, takes Enzymes and Probiotics and has been been doing really good. While doing research I found a lot of information to heal UC Homopathically. Just type in how to heal UC homeopathicaly and you should find it. To search postings in the US, go to google and type Google/USA, then do your search.

 

Dear Nat, 

I notice your message was written a while ago, so I hope you have had some improvement from the U.C by now. 

I've had pretty much the same experience as you, though not so severe, which didn't improve until I was prescribed Prednisolone rectal foam, which I used morning and evening for the first month, then night time only for the next month. This acompanied by two Asacol (mesazaline) tablets three times a day was very effective. Six months on I'm still without symptoms although still taking the Asacol.

Before I used the  rectal foam, which actually was easy to use ( though scary at first ) and had no adverse side effects I had a three month course of Prednisolone tablets with the usual sleeplessness, weight gain and moon face. Although they worked, as soon as I stopped the U.C returned. The rectal foam seemed to do the trick. While I am having a flare up diet does seem to have an effect, but I don't think it is the cause, as when I'm well, I have no problem with any specific foods with the exception of raisins, and currants.

Hope this may help someone - you are not alone in feeling down, it's a miserable condition.  All the best.  

 

Hey I definitely know what you are all going through to help I kinda have to tell my uc story. I am a 16 year old girl and was diagnosed when I was 15 after 6 of the worst months of my life. It started with what I thought was food poisoning that progressively worsened. My doctors told me I had been going through more pain that most people could even think of while doing extreme exercise. After months of begging my mother I finally when to the doctor and was then hospitalized getting a 2 pints of blood. I whent through months of every and any drug they could put me on and nothing worked. i was told I need surgery and was horrified when told they have no idea what they will find when it happens. A 10 hour surgery later I had an ostomy bag for a month and boy did that month drag on. I am now 7 months out of my second surgery with no bag. Here's how I can help 1. YOU CANNOT EAT ANYTHING YOU WANT there are a lot of websites giving you examples of finding what you can eat with a uc diet but you will have to find what works for you 2. Surgery is not a complete cure! for me I still have the arthritis associated with uc and I've become lactose intolerant along with many other problems 3 it's ok to feel upset about what you are going through you should never be ashamed about what you can't control (I'm still working on this) 4. FIND A DOCTOR YOU TRUST please just listen to this I have to constantly fight with my doctor to listen to me because she labels me CURED 5. Research. Research everything you can about your disease EVERYTHING!!! Every symptom you thing is related I just learned I have a salt allergy due to uc. It helps you understand how to help yourself or anyone with this disease I hope this helps someone