Please help me answer my questions.. I am sick and tired..

Hi

I am 18 years old and was diagnosed with UC last year, I find that stressing about my condition only makes my symptoms worse. I have been advised to avoid spicy foods and food containing high fibre. It frightens me that this is an incurable disease and it isn't something a teenager would expect to deal with. However, this illness can be controlled with the right medication. Try to keep positive and stress and anxiety to a minimum. I am also vegetarian and am confused as to what eat to keep my iron at a decent level. Apparently alovera juice helps, its something which you can try. I was initially prescribed Asacol which worked immediately however my doctor then changed it to Mesren after which my health deteriorated, I am now back on Asacol and am hoping that this will reduce my symptoms once again.

Hope this was of some help.

Hey, Thanks for your reply Sonu..Just wanted to know what do u do in flareups..From past 1 week I have been going toilet 5 to 6 times a day which doctors say is flare ups. It is just horrible times..How do u keep ur stress level down,,I can't stop thinking as I am becoming week and have lost 6 to 8 kgs in the last 6 months. Also I see constant blood. Where r u from? On food wise what generally u eat? I am on normal Pentasa tablets (meselizine) prednisolone Rectum foam (Steriod) since a week for my flareups but not doing good. Doctors say to continue taking that. My appetite has reduced crazily..Is there a better way to stop motions?

No problem

Well ive been having a flare up for almost 6 months...it has been awful and my stress levels have been so high due to exams and things. I have lost 3kg in the last 2 months and also see constant blood. I generally try to avoid bread and anything which is heavy as my abdominal pains increase..I eat rice and lots of fruit and veg. I am not sure what to do about the motion however i have been told that bananas help..also, try to stay away from foods with acidity. Eventhough you are experiencing a loss of appetite, by not eating you will notice yourself becomming more weak. I try to force myself to eat atleast 2 decent meals a day.

Hi Sonu and the rest of you there..I am now in a very bad stage and have been going toilets every 4 hrs..Almost like 6 times a day..Whatever I eat goes down. I have lost 3 kgs in a week..Yes, just a week..I went to Accident and emergency and they said me to continue taking my medicines..I am taking 8 Pentasa and Prednisolone rectal foam twice daily but none of these are working for me I guess.. Any other medicine you guys take? Any natural remedy to make my stool better and how I can stop my health from deteriorating. How many times do you go to the toilet? What food you eat everyday as a vegetarian..Where are you from?

Hi to everyone who has posted to the Ulcerative Colitis Forum. I feel for everyone and would just like to shed a bit of hope for some of you. All my adult life from about 18yrs old I had 'bout's of diarrhoea, tummy cramps and a general feeling of being unwell. I didn't seem to put on any weight. When I was 24 I had my first child but throughout the pregnancy I had constant diarrhoea and at about 8 months my GP was concerned as I was underweight and according to her, dehydrated. She sent me to see a Consultant Physician whom, because I was pregnant, wouldn't carry out invasive tests but prescribed Codeine Phosphate to stop the continual running to the loo. He told me that Codeine Phosphate is basically a pain killer but had a side effect that (and he said these words) they paralyzed the nerve ends preventing passing faeces for a period of time. I ended up with a real emergency cesarean which I am convinced to this day was all part of my problem. Anyway, during the next year I had a barium anaema carried out along with all sorts of blood tests. The Consultant could see something wasn't right and wanted me to go to London (I lived 80 miles away) for investigation but due to being a new mum and unable to leave baby I put it off and continued to live with the diarrhoea. As time went by I actually learned to live with the problem and requested a further supply of Codeine Phosphate which I eeked out when it was really bad. Years went by and to go on holiday or to fly was a real nightmare but I saved up my codeine phos to see me through the travelling period. It wasn't until 6 years ago that I was eventually talked into going to my GP to ask to see a Gastroenterologist after having spent quite a lot of money going to 'quack's who offered special diets and pills, saying I was allergic to this or that. First thing the Consultant did was a Colonoscopy and he was able to tell me I had non specific Ulcerative Colitis, diverticulae and polyps. Polyps were removed and he then told me that he had no idea what caused the UC but to continue taking my Codeine Phos., not to deny myself food (apart from known triggers) and if need be to take an extra tablet in the event of a flare up). Whilst in the home I just go to the loo as often as needed but when planning a trip, even to the corner shop I have to take a Codeine and this will last up to 4 hours, so some days I don't take any and on a long journey I have to plan it like a military manoeuvre, taking a C.Phos every 4 hrs until my journey's end. I fly to the USA and although the car trip to the airport and then a long flight is a huge ask, I do it. I have a membership card to a Society that requests that as a Member, I may need toilet facilities urgently. I have it handy on the plane in case I can't access the toilet because of the 'return to seat' message. I would add, I am now 69 and although it has been miserable at times, I have not allowed UC to prevent me enjoying life. I know a lot of Consultants will probably be dismissive of Codeine Phosphate but I can say hand on heart, they have allowed me some semblance of normality. I found a long, long comment written on a Forum by a retired ail line pilot who had had the same experience as myself with Codeine Phos. and he had kept quiet about it and was able to fly for 29 yrs. until retirement. Had anyone have known he was taking the medication he would not have been allowed to pilot as in the USA it is Classed as an addictive drug but he like me, consider it a life saver. Hope this may help some of you.

I realise this is an older discussion but hope that you may still log in. I am 42 and have had uc since I was 19

At 36 I was diagnosed with bowel cancer, and looking back probably had it for a couple of years, so around 34, I am not trying to scare you but just want you to understand age doesn't always come into it with bowel disease. Make sure you go for regular scopes even when you are in remission. I recovered from cancer and in my experience, after the initial shock and speaking with specialists, it wasn't as bad as you imagine. Yes,chemo made me sick but only for a few days either side of it, the rest of the time I was living pretty normally.Since recovering, I have moved area, went back to work, got married, so life really does go on. My advice to you would be, try not to over stress yourself, that aggravates symptoms, eat well but not to much fibre, fruit veg etc, your bowel is ulcerated so shouldn't work as hard as a normal persons, get plenty of rest and always go for your check ups even if you feel well, and ask your GP about pain relief, enteropathic arthritis is very common with IBD, I couldn't work if it wasn't for tramadol. My uc is an autoimmune disease and I now suffer with autoimmune hepatitis, primary sclerosing cholangitis, sjorgrens syndrome and thyroid disease, as well as uc still in the small part of bowel I have left, but I work full time, go on holidays and don't really live much differently to most people apart from all my medication and hospital appointments and I need a bit more sleep than most, so please dont get too down, once your GP hits on the right meds for you (it can be trial and error for a while) you will learn how to live with your health problems and your life will go on as normal. Btw, I was living in Manchester when I was ill and Manchester Royal Infirmary were amazing, you are in the right place!

I forgot to say, as far as diet goes, I found milk an aggravator, fine if I have it in tea or a small amount on cereal ocassionally, but if you drink milk you may be making things worse and being veggy might be difficult, I was told to stay away from seeds, wholegrains, high fibre fruit and veg (not all) be careful of seeds in berries etc. I was basically told to do the opposite of what they recommend for normal healthy people, no five a day for me, Ask your GP about a low residue diet.

Hi,

As you read above I was diagnosed with mild UC in Rectum and lower sigmoid early this year in Jan 2013 with stools just twice a day initially. It was a mild disease early so they started me with Pentasa for first quarter but my health and disease started deteriorating. My first bad phase or flare u can call it happened in May, where my bowel moments increased to four to 5 times a day..Lasted for few weeks and then I was on oral Prednislone steriods which worked fine and gave me relief for a month but again UC relapsed. This process repeated in October. Then they tried Azathioprine (Imuran) but again was told to stop it in 2 weeks time as I started vomiting and had nausea. Could barely eat..Since last week I was bleeding with liquidy stool, 4 times a day..I have now been admitted in Royal Infirmary Hospital to sort things properly as Pentasa, prednisolone and Azathioprine didn't do well to me and it's been 9 months since my disease has been active ranging from both mild to moderate. I don't want it to get any worst after this. I am on Hydrocortisone Injection for 4 days and then with a camera test tomorrow and depending on the condition of flare they will either start me with Infleximab (Remicade) or Mercaptopurine. Remicade does do wonders for many but not for all and has some side effects. I don't wan't to bother myself with side effects now. Can I travel much while I am in Remicade? Would you know more about remicade? If some else have been treated with these medicines then do let me know. Please I would appreciate ur reply?

Diet wise since I am a vegetarian I have been asked to add soya milk and tofu to get the proteins and have low fibre diet. I am also taking fortisip food supplements to help me maintain my weight. At the moment I have been also told to take high calorie food so all the junks like, chocolaes, cakes, crisps, fatty foods r quite useful for me to help increase myweight but I don't think that's right. Trying my best to eat health and improve my weight.

Male – 29 yrs of age. Job – Banking, Location – Manchester, Weight – 50 (Was 56 when diagnosed)

Hi, I was on remicade a few weeks back but it didn't agree with me, they want to try me on humira next.

The side effects can be bad but like you say, it's best not to worry about them, your medical team know the risks and if they think the benefits outweigh the risks for you then thats all you can go on, and you will be carefully monitored while on it anyway. When I was first diagnosed it took a good year to get it under control, Im sure you will get some sort of respite soon, I doubt I would be here if it wasn't for MR Infirmary, you are in good hands. I went to Spain while on remicade, so you can travel but maybe if you intend to go further afield where diseases may be more prevelant, I would ask your consultant.

I am on azathioprine, to try to control my other immune disorders as well as UC, but UC hasn't really improved on it. I wouldn't worry about healthy eating at the moment, get the calories in and get stronger and take up the healthy eating when your health improves, I was going to suggest build up shakes from the doc, so its good you have those. Try to keep positive, it might not feel like it but you will get to a better place.

Hi Thanks for the reply Steph.. I am pretty satisfied as you yet while I am in Hospital. As I said have my camera test tomorrow which will say which treatment suits best. Actually I am also hepatitis B. I forgot to mention earlier so they are watching me very carefully. They don't want my viral load to go up because of steriods..Lets just hope for the best and try to be positive as you said.. Want to get out of here soon and resume work.. All the best to you as well.. Hope you get better..I am glad that I can share my story with so many similar patients like me and get positive feedback.. Thank you for your advice..

Hello Chetan

I have been diagonosed with UC back in 2001. In early stages i was give steroids (prednisolone) starting with higher dosage and reducing it every week. I was also taing Asacol with steroids. But as soon as steroid dosage stopped my Ulcer conditions use to get worst (bleeding in stool, increase in number of bowel movements, weight loss and other related problems). It continued for couple of years where I have take steroid dosages numerous times but my health never improved. I am an Asian origin male and I even went back home to try Homeopathy treatment and even stayed there for almost 6 months doing this treatment, but no luck. I came back to UK in 2004 after staying 6 months abroad. On my 1st consultation at Hospital (not GP), I was seen by one of the Gastro... consultant who adviced me that there was a new medication on market for UC and offered me to use it on trail basis to see if it makes any difference to my conditions. This medication is called "Azathioprine". Its an immunosuppressant medication which works through your immune system. Since taking this medication my life has changed and has become normal life like it was before i was diagonosed with UC. Since than I have not taken any steroids. But i am still on Asacol tablets 2tablets a day. I thank God so much that it has worked very well on me, I can eat anything i want and do everything (even excercise, weight lifting, running) that i use to do in my normal life before being diagonosed with UC. I am not sure of you have heard of it. If not than I would recommend you to try this medication. But please be aware that it has not worked on one of my friend who has UC problems, but however it has worked very on me. I started off Azathioprine with prednisolone enema (from back passage) but i only used it for a week than i was told to stop using this enema and just take Azathioprine and Asacol tablets.

If you need any more info than let me know, I'll be happy help you because I know how painful and suffering this illeness is.

Regards

Dips

Hi Dips,

Good to hear from you..I was diagnosed with mild UC in Rectum and lower sigmoid early this year in Jan 2013 with stools just twice a day initially. They started me with Pentasa for first quarter but my disease started deteriorating. My first bad phase or flare u can call it happened in May, where my bowel moments increased to four to 5 times a day..Lasted for few weeks and then I was on oral Prednislone for 2 weeks which worked fine and gave me relief for a month but again UC relapsed. This process repeated in October. As you mentioned the doctors here then tried Azathioprine but again was told to stop it in 2 weeks time as I started vomiting and had nausea. Could barely eat..Since last week I was bleeding with liquidy stool atleast 4 times a day..I have been admitted now in Hospital. They had to give me Hydrocortisone Injection for 4 days through my veins to get things in control.. I had my sigmodioscopy couple of days back. My colitis is now gone up to the transverse colon but the doctors say the severity is the main thing and not the extent of colitis and at the moment it is not very severe. I am getting discharged now..Considering all this they have decided me to stay on Prednisolone for the next 8 weeks and while that gets tapered down, they have also introduced 6 Mercaptopurine started yesterday as in my case Azathioprine didn't work. The idea is to stop my prednisolone in next 8 weeks and 6 MP to taken in effect from next few months..Have you ever been on 6 Mercaptopurine? They are just doing a trial and error basis here I assume? Nothing else can be done other than trusting doctors. Have u tried Ayurvedic medicines as well? I am keen to start that.

Hey Chetan

I am sorry to hear that you are admitted in Hospital. I can understand what you are going through as I have also gone through with the same pain and suffering. I really feel for everybody who is suffering from this illness.

Prednisolone will only tamper / heal for certain amount of time, basically until you keep taking it and until it is in your blood. When you stop this medication and it effects runs out of your blood, the flare up will start. To be honest, it is not a curable medication in this case. I am sorry to hear that you tried Azathioprine and it did not work. Same thing happened with one of my friend. He has tried it too but did not work.

When I was admitted in hospital when they found out and it was getting worst, I was given few injections but I don’t remember what they were (name of that medication). I was also given prednisolone tablets along with folic acid.

I have never tried Mercaptopurine. Chetan, in UC the only thing we have to is to try everything we can to stop this flaring up. I know its very hard but there is no other choice. In my case Azathioprine worked after suffering for almost 4 years. In those 4 years I have taken prednisolone numerous times and as you know it is not good taking prednisolone for long time. It has lots of side effects. One of the side effect I have contracted is it has weakened by bones. I am now on Vitamin D & Calcium medication since past 6 months. I would recommend you to trust the doctors and try every medication they can. One day you will come across one of these medication which will work and your life will be back to normal.

In regards to Ayurvedic treatment, No, I have never tried Ayurvedic medications. If you are keen to start on it than go head my friend, as I said in UC the only thing you can do is try everything that you can in order to stop the flare up, get rid of this illness and get your life happily back to normal. But one thing I would say is don't mix these different treatments together (Ayurvedic with other treatments). Seek advice from your doctor on this.

Wish you all the best my friend. I hope very soon you will something that will cure your UC.

Dips

Chetan could you let us know if Mercaptopurine works well in this condition. Or any other treatment or alternative medication that works well, could you let us know so that I can recommend it to my friend who is also UC patient.

Thanks mate

Dips

Hi Dips,

Thanks for the reply. I am not sure how Mercaptopurine will work as I have just started on it. The doctors say it takes at least couple of months for the effect to be seen but will let you know if I feel better. Also in terms of Ayurvedic medicine I am keen to try it because they do not do any harm to your body and has no side effects so can be taken with normal medicines and sometimes has the tendency to heal and not just stop the flare up.. Where are you based by the way ? How old are you? How long you have been with the disease. Also I am indian so again just asking on the diet? What do u generally eat? Anything that helps you food wise? I eat no meat or fish apart from just eggs and total vegetarian.