Newly diagnosed with crohn's.

Medicines treat every autoimmune disease using steroids and we are at receiving end of it. I understand it's a horrible disease and will not stop taking medicines, but will keep researching hoping that one day I will no longer need medicine. I am vegetarian since birth, I dont have option to cook meat and fish. I can eat egg, will that be helpful? Can you recommend something else in diet?

Hi anna, happy to hear about your 4 years remission, I hope it's for life time for you and no one to suffer of this again.The problem with me is I don't get pain. I have never had pain. I am bloated all the time and nauseated. I can not eat anything. And food gets stuck on upper part of abdomen. It take two to three hour to travel in my stomach I think. I already have auto immune issue with my lungs, But I manage It and haven't taken medicines since 7 years for it.i think I am prone to other autoimmune disease as well.Yes I will do read and research, also will check with a GE. As of I am diagnosed by my general physician.

Thank you! Mine was in the terminal ileum and on occasion I too had problems getting food through, I would bring up undigested food the next day, another reason I knew something was wrong. When I had ct or MRI scans I couldn't drink all the liquid. Now I know it was because the inflammation was bad then I had an abscess and it all went downhill from there. I had 7cm small bowel removed. Sorry you are suffering, wish I could suggest something for you to try. Fodmap diet might be helpful. Can you tolerate something like isowhey, a kind of liquid food with nutrients, a powder you mix with water? I also have to take B12 and D as I don't absorb them from food. Warm water used to help me in a flare up and I tried Yakult. Some people have to be fed by tube into the stomach to give their bowel a rest and a chance to settle down, is that an option for you? I do hope you get some relief, codeine based painkillers also helped me. Take care

I am more scared now. I don't want to have surgery. I don't want to be negative but instead of going for surgery I'll prefer to die. Will try diet and consult a gastroenterologist as soon as possible. I am having similar symptoms as your. Food doesn't seems to go down, not able to drink complete bottle. I have to been from one doctor to another since last 12 months and every one said it's nothing. Wish they were more serious towards their patients.

I am already a vegetarian. I only thing I eat is vegetables and wheat bread, pulses. I don't know what more should I do.

I am so irritated right now. I am out of options. I feel my upper right side of abdomen is swelled.

I don't want surgery either, but I don't want to die. It doesn't mean that you will need surgery, but many people have to and they come out of it fine, so try not to be scared if this is what you need to survive. Medications can prevent surgery and damage to the colon and small bowel, so medicines are a good way to go. I have been dealing with IBD most of my life. It sucks but I am ok and you will be also.

Surgery is always a last option. Have you had colonoscopy/endoscopy/MRI/ct scans to definitely diagnose Crohn's? Are you coeliac? Wheat would upset you if you are. In a flare up you need to be eating bland food, the bowel doesn't like roughage as it is already inflamed so needs what I call beige food, colourless like chicken, rice, scrambled egg, maybe your veg and pulses are upsetting you? I only ask as you say you have seen various doctors who all dismiss your worries which isn't helpful. You know how bad you feel so please get back to your GE

Yes I have been to 4 gastroenterologist in 11 months or so. One said is dyspepsia, other said it's gastritis, third one said it's only only acidity, last week only my physician diagnosed me with Gerd and crohn's. I didn't have any test recently except CBC. Which showed bit of infection so I got antibiotic again. Though I do not have any relief.

You really need a colonoscopy/endoscopy/MRI/ct scan to diagnose Crohn's, there are so many bowel diseases with similar symptoms. I was told in 2006 that my small pain may be Crohn's, I had all the tests and was told because they couldn't find anything else it is more than likely Crohn's. The terminal ileum is a very difficult area to reach for definite diagnosis so I wasn't convinced. I am very proactive with my Crohn's, if I am going to have to live with it forever then I need to find out everything from diet to treatment and maintenance. GE's need feedback from their patients as everyone has different symptoms. I was told to avoid dried apricots/sultanas/raisins and anything dense like donuts and tomato based meals like bolognese tend to upset me. Have you been given steroids, they are really good for getting inflammation under control. I don't mean to sound pushy but I hate that you are suffering and what your doctors are telling you is guesswork and treatment ineffective

It's tiring thinking how I am caught in this mess when one year back I was very healthy.i have all the symptoms of crohn's loose bowel in morning, tired all the time, nausea, can not eat full, I think based on symptoms she diagnosed and she is pretty sure. Will check with doctor as of now she has not prescribed any steroids. Already missing today's work day to get her appointment.

Will update you all about the progress. Thank you everyone for the suggestions.

All those symptoms can be attributed to other things, I know it is frustrating and you put your faith in doctors but for your own peace of mind you need a firm diagnosis. You have joined this group for help and I am sure everyone on here would advise you to insist you get properly investigated to back up your doctor's assumption you have Crohn's, then treatment will be clearer and more effective

Hi Sheila, I Am really sry If I sounded like I feel you guys are not brave. You people have been suffering from this horrible disease daily, getting surgeries and still living with such nice attitude I respect that. I no way I meant that. You people are the first support I have here. Because crohn's is very rare where I live.

I was thinking to find way because I see that it's an inflammation disease and medicines only does is reduce the inflammation, they don't go for the root cause. I was thinking to figure out the prob and then treat it. I would once again thanks for you reply I will be now more cautious and will not ignore medical help.

I forgot to mention, I think I am in early stage of disease. I think only prob as of now is food is not travelling though intestine due to inflammation as it used to be. I eat at night I feel like food is stuck on top of the abdomen and then I sleep, morning I wake up Okay. With no issues except that slight nausea. I don't have diarrhea, after antibiotics morning Loose bowels too went away. Due you have suggestions for this, how did your crohn's started? Was it full blown? I mean all symptoms at once.

Hi, my phone started making funny noises and as I am on a alarm system had to come and check it out, which is why I caught your reply. Up too early for me!!!  Anyway will answer your query. I was 21 (which is something that you will hear a lot about) Apparently every 7 years your blood changes and things happen. I already had problems eating and lost 6 stone. I ended up at 5.5 stone and looked as if I had come out of Belsom. Crohns can attack any part of the digestive system from mouth to the other end. Terrible pain because it caused blockages in the bowel. Quite frankly I looked as if I was going to die. Rather like you are saying about where you live, there were very few cases then and people were frightened to ask what was wrong. I spent my life in and out of hospital. Luckily for me I met a surgeon who had gone to USA to study this and he came back with typed notes on how to tackle the op. At that point all I wanted was to be out of pain. They fed me with a huge lot of iron, I was constantly anaemic so did what they could to make sure I survived surgery. The op was nearly 6 hours long and I knew that without this I was not going to survive. Needless to say I did and for the first time in something like 8 years I could eat chips!!!!! Laughable I know, but they were one of my favourite things. I think it took about 5 years to get back to a reasonable weight and after that it left me alone for a while.

Luck came into this, I met a great guy who was my specialist who talked to me as a human being and passed on what he could in the way of knowledge. I told you about my latest scare, when I nearly lost a leg because of infection, and dear love, although retired and dealing with his own health problems got in touch and told me what to do. He impressed on me how urgent the situation was and once again was the fault of my immune system. Out the other side of this now,but you will gather from this how much we need medical care. With you, have they said anything about a hiatus hernia which I believe causes the type of symptoms you suffer. Phone now quiet so I can go back to bed. Best wishes

Sheila

Hi Sheila, Nope nothing of hernia they said.

With symptoms doctor is quite sure. Also I have undigested food in stools always,even of what I had eaten one day back. Again I am getting loose bowels now. She told me go to gastroenterologist as she is out of options and symptoms are not improving.

Hi again. I really think that an appointment with the Gastroentermologist is a good thing. because they specialise in all sorts of bowel problems and who knows it might not be Crohns. You will gather from the replies you have received that it takes a lot of tests to ascertain the evidence to seriously consider it's Crohns. Hopefully and fingers crossed you will be able to feel confident of their advice and diagnosis. As I said before try looking up the nearest branch of NACC and put your concerns to them, even if you have to ask the questions on line.Good luck. Let me know how you get on.

Best wishes

Sheila 51271

I consulted gastroenterologist. He agreed with something being wrong in stomach also sait that it could be mostly due to antibiotics. As of now he has given me b12 supplements, as I was low on it and he said to take those and watch. Then if things doesn't work out I will have to take colonoscopy. Since I am vegetarian I have just started eating eggs now and taking supplements. But I don't think this is the case as most of the vegetarians are low on b12 and it never createzs prob for them. He wanted me to take shots. Due to OCD of syringes I can not.

Hello again, there is another stomach condition called helicobacter pylori which you may like to Google, worth investigating and if proven treated easily. Vit B12 and D are common deficiencies with Crohn's, I used to have a B12 jab every 3 months but then I started taking 1000mg tab once a day and all bloods have been fine. Glad you've seen the GE, hope you get answers soon

Hi again

The reason why I had to start taking B12 was because I was badly anaemic and they don't like to introduce blood transfusions to the body too early, because it could cause your body to get lazy and not produce new supplies. The reason for the anaemia was because I was constantly losing blood in the digestive tract. This had nothing to do with the fact that I was not eating meat, because people who suffer from Crohns and Colitis know that meat can take a long time to breakdown in the bowel. so you are advised to limit eating this. Root vegetables (potatoes, swede etc) are fine, but things like lettuce do not breakdown and basically come out as they went in, Spinach and brocolli have iron and lots of other veg as well, I think one of the things they advise you about is eating sloppy food. I never was able to drink hot drinks ending up in the loo immediately so had to get use to tepid drinks, it was the only way. With me I became very allergic to some smells and eggs came into that cycle, couldn't bear the smell. The same occured with water from the tap, if it was too chlorinated. So I would buy bottled water. I think a lot of people these days are vegetarian, so reason that this is not the culprit.

I think you are overthinking things and nerves play a distinct part in this complaint. The Consultant will ask you if there is anything worrying you and you don't want to go down that path. I was the most laid back person but because you are not well you worry. Put your energies into pitting yourself against this,  Best wishes  Sheila 51371

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I was originally diagnosed with UC, but I now have issues with low Vitamin D, B12, Protein and Potassium. I would say that it looks like I have Crohn's Disease instead. I am not a Vegan and I eat meat, but I am lacking in protein and B12. Did they give you shots of B12? My doctor just said take a suppliment, so I have been taking 5,000 mg of B12 twice per day. I tend to eat bland, soft foods, as they are easier to digest for me. I do eat a lot of fish. I have cut out red meat, but I still eat beef once per week. I live in the USA, so we don't have the same system of treatment. My doctor wants me to have a plan that we can both live with, but I am the one who has to live with it not her, so she needs to be more supportive of my decision when it comes to medications that I choose. Do the doctors there force medications on you or do you get to choose what you want for treatment? Don't get me wrong, I need the input of my doctor, but I don't always agree on the medicines. I am fine taking a steroid, but she wants me on a Biologic. What medicines do you take for management? just curious.

My doctor was suggesting me to take shots, thinking it was reason for my gut not able to function properly. So I asked him to give me tablets instead. I have needle OCD. No medicines except one b12 till now. But I have to watch for one month. If it doesn't get better with tablets will have to go for endoscopy. I am trying few ayurvedic treatment but I feel something is wrong with right side of stomach. I sometimes feel lump there while sitting or eating. Though I cannot feel it by touching. While sitting I feel something is there. Will have to wait for one month for further test or medication. Till then I am trying different ayurvedic medicines which do not have side effects.

Hi I was deficient in B12 and Vit D long before I ever got diagnosed with Crohn's. To begin with I had a B12 inj every 3 months and took a D3 supplement, recommended dose 1000IU. I am in Australia so our meds are probably different to yours. I have always had regular blood tests so I know my vitamin levels are what is needed. The last few years I have taken a B12 supplement of 1000mcg and that is adequate according to bloods. What you are taking seems a little excessive, were you advised to take that much? Do you have regular blood tests to check you are within correct limits? No doctors here force you to take meds but they have the knowledge and I always research to see why they are recommending certain ones and I always run my own ideas past my GE but at the end of the day they have your wellbeing at heart and when things get bad you need to treat accordingly. I am in remission after an op (4 years) and am off all meds and so far so good but I am still monitored every 6 months and will always have to take the supplements.

Yea, I was on megga doses of D 50,000 IU, but I was still on the low side of normal with 50,000 IU. I am taking a lot of B12, because of absoption issues. A shot goes directly in, but the pills have to be absorbed by the tissues in the small bowel and if they are not working properly, then you will still be low despite taking lots of it. CD is a tough one to diagnose, as they need to have evidence of it and so many people find out that they have CD after they have their large bowel removed due to what they thought was UC. My doctor knows that the steroids I am taking are masking what is truely going on, but I told her that I am not ok with getting sick in order to find out what it is. After all the treatments are mostly the same. Either way these diseases are awful and those of us that have them suffer as a result. I wish you all well and hope that you stay in remission. It is all we can hope for. I hope that mine gets better soon as well, I am tired of hurting.

Hi again, goodness me such a big dose and still not enough. I took a chance really changing to tabs but even when I was pre-op it was enough. I know someone who has UC and Crohn's, double whammy. I was on steroids for a while, intravenous when I had to go to hospital with an abscess, after more scans it was felt that I would be better off if they removed the inflamed bit of small bowel, I got marked out for a stoma but fortunately they were able to rejoin. Can UC lead to Crohn's or are they two separate diseases? You are right in saying how awful the disease is, I'd never heard of it until I developed it and now I hear about it all the time. Hope you feel better very soon

I makes sense to try things in the meantime, but the shots are not bad, plus if one has trouble absorbing nutrients then the pill form will have limited affect. That is why I want the shot, also why I am taking a high dose. If I can only get the pill form, then I need a lot, because I am sure that I am not absorbing very much of the medicine. The only way to know is have blood work done on a regular basis. I will not let my doctor do another scope on me for two years. I had a really bad time of it and not going to go through that again. If doctors want patients to have these scope tests more often, then you would think that they would do everything in their power to make it a good experience. In my case, twice I woke in pain and they did nothing for me and then they tell me I need to be screened for cancer every two years. Well, they cured me of ever wanting to go in again. I may end up risking my life due to my fear of another bad Colonoscopy or Endoscopy. I just had one done in December and my new doctor wants to do another one on me now. She assured me they will do everything in their power to make me comfortable, but I don't believe them at all. This is what happens when a doctor screws up and thinks at the time it is no big deal, because I will most likely not remember it do to the medication, well I did remember it and now I am scared to have another one. Good Job Doc.