Struggling please help

I was officially diagnosed on 12th october with Crohns. It took me a while to join a support group but i just realized i cant handle this anymore. i have had digestives issues for 7 years i have spent years on weird diets because of "intolerance's" to everything from milk to wheat to god knows what all in a bid to prevent my stomach from getting upset. Have run a million tests and tried a million doctors. Finally after each test came clear and doctors looking at me like i was a hypochondriac i gave up. Stuck to homeopathy to control the symptoms and basically watched what i eat like a hawk. Wasn't doing very well but i was managing.

Finally it took losing 7 kgs for my parents to realize i don't eat. So finally they took me to a dietician who heard my symptoms and realized i might have an IBD and within 24 hrs of meeting her i was at a hospital getting a colonoscopy and watching first hand the brutal state of my insides.

Crohns is the one thing i did not want to be diagnosed with. I'm from India the awareness and support is very low. Plus getting foods i can eat which agree with me is even tougher. To add to all that I'm a MBA student i live in a hostel at my campus 12hrs away from home. My course is brutal and very rigorous. i cant cook my own food we have a mess/canteen. its just been 6 days since i came back on campus and i have managed to have one of my most severe flares. Its been two days i haven't been able to eat. nothing works. The diarrhea wont let me sleep and my stomach is so painful i cant sit up. I somehow manage to go for classes cant sit through the lectures but i sit for ho much i can(thankfully i have few classes this week). I have told my friends about my situation but they don't really understand and i don't expect them to. Cant talk to my parents they are too worried and i can barely handle the diagnosis without having to manage them. People are being very supportive but the feeling of isolation has just been growing everyday. I am at the brink of tears almost every day. I forced myself to come back to campus because i thought i should get back to normal as fast as possible to adapt to it and move on but its turning out to be way to difficult and overwhelming.

Its been a tough time right now i have only been put on an anti inflammatory mesacol as my doc was waiting for the biopsy report to confirm what i had. I have an appointment with the GI this Friday my parents will go for it.

I had a few questions how do u stop the diarrhea when you have a flare?
How do you know if your med's are not agreeing with you?
And how long does it take before things settle down and it feels better emotionally and physically?

could someone please help?

Thanks

Sorry you are having such a rough time. I hope you get some answers soon.
The only thing that stops my diahreah is Percocet. I take them for pain, stopping the diahreah is an added bonus. I've tried Imodium, but it doesn't work at all for me.
I've just started meds as well, so I can't answer that question for you. I'm sure someone else will.

I'm so sorry you are struggling right now. :ghug:

If the biopsies do confirm you have crohns, the first course of action is usually to alleviate the inflammation. Usually prednisone or entocort (steroids) is used. Another option is exclusive enteral nutrition - a liquid diet where you eat no food but all nutrition is provided by special formula. It has comparable success rates as steroids with no side effects (this is what my son used to induce remission). Often maintenance medications are started at this time as well. Maintenance meds often take a little while to work and this is why they are started asap.

The location of your crohns will also be a factor in treatment; your GI should have more info regarding this following your colonoscopy. Did you have any other tests done? Scopes cannot reach very far into the small intestine, so often imaging tests are also needed (such as MRE or CT scan).

Have a look through the subforums for treatments and also look through the forum wiki to get a better idea of what meds may be offered to you.

For now, try to have soft foods with little fibre to lessen any irritation to inflamed areas. I've no experience with this but have read of people using the BRAT diet (I think it stands for Bananas, Rice, Applesauce and Toast) for day or so as it is easy on the intestines. Also consider using some nutritional shakes for now to help keep your nutrition levels up (the ones I know of are Boost, Ensure, Peptamin, Fortisip - not sure if any of these are sold in India though).

Good luck on Friday, I hope you get some answers.

Hi Sharon,

Sorry to hear about your diagnosis. I was also in university hours away from family when diagnosed.

I haven't found much that helps with diarrhea while flaring - getting it under control is the only thing that really works for me. Imodium or Questral (in Canada-not sure what they would be in India) might help.

Sometimes it can be hard to determine if you feel awful because of your disease or the meds. Read the info about side effects and monitor changes in your health/symptoms. Talk to a pharmacist or your doctor. Ask lots of questions!

It could be awhile before you the flare gets under control and you feel better. For my first flare it took a few different drug combinations and lots of trial and error to get me to full remission. I did notice some improvement immediately after starting steroids, but like you had been sick for a while.

Emotionally you will likely have ups and downs. I'm my case, I was relieved to get a diagnosis and a Course of action to start treating it. Do I feel depressed and angry some of the time? Of course! I cannot stress enough that every person is different though and it is okay to be angry, sad, depressed or anything else you might feel. It might help to talk to a professional.

I urge you to let your school know and see what resources might be available. I was able to get extensions on assignments and exams, bathroom access during exams, etc. I finished my undergrad and got two masters degrees.


Hope you get some answers on Friday.

Thank you everyone!

Hey tesscorm yup i have been asked to do further tests to check my small intestine but since i haven't met my GI since the initial test i don't know when he would like me to do it. Right now my colon is completely affected. My terminal ileum just has signs of inflammation but no ulcers yet. On Friday hopefully he will tell me what to do next.

Finally I'm a bit better i luckily had just bananas yesterday and i stopped my meds and they agreed with me so yay!! The pain is still there but as long as i don't have to keep running to the bathroom I'm good. The BRAT diet sound good to me will definitely try it and its easy for me to do it here on campus.
Nutrition shakes i don't know actually i am pretty much intolerant to most foods my dietician is looking for stuff i can have but like i said India doesn't have much options.

I think I'll have to talk to my doctor about the meds. I don't know what is available here and i think they will have different names. So looks like i have a lot of question for Friday .

Well emotionally I'm a wreck its been a very bad week for me. i have had depression for a while now because of my constant illnesses. I kept having colds coughs and tonsillitis(got them out 3 weeks back as well) each time i am forced to have antibiotics which would worsen my stomach it wasn't fun.
I am pretty much confined to my room i miss out of a lot of the normal things of campus life. It feels kind of unfair. I'm pretty active i love traveling i trek in the Himalayas every summer and i love playing football I'm part of the team here. This year i haven't been able to go on a trek as i was too ill. I missed football matches because of the pain. Its not really been an easy ride. I know I'll be able to do all these things once i improve but right now its all too big. I almost gave up my dissertation as well because I'm so tired and struggling with it all. I had no idea how to manage to churn out a good research project when every day is a struggle I'm barely managing my assignments a huge report seemed even harder. Finally it took the realization that i can do the dissertation in my room which is definitely better than 60hrs of advanced courses in a class room.
Secondly this year basically in less than 2 months we have companies coming in to hire us. People are all looking at who they want to work with. On the other hand i am struggling to handle my disease. Plus even know what i do think of a job anymore. Do i limit my options, how do i factor in my disease while looking at a job and most importantly should i factor in my disease? So I wasn't relieved with the diagnosis of crohn's Its too chronic of a disease for me to feel ok. But yea it was a relief i no longer have to pretend and hide my pain. 2 yrs of severe chronic pain and trying to lead a normal life and trying to do everything hasn't been easy. And there is the hope the meds will work in that way I'm happy.

Igpcarter Thank you for telling me its possible to complete my course i will talk to my professors for help. Maybe they will understand. I managed to screw my assignments a lot last term coz i was so sick i think my CGPA is going to take a bad hit my results aren't in yet but i know it wasn't a good term. Maybe now it will be better.

Sharon,

My heart goes out to you. If you think you can finish school do it, but as a mother, I say give yourself a break, get healthy and into remission and then go back to school if possible. That would be best. Crohns is nothing to mess around with and you are very young.

You are sick and need to take care of yourself first. yes your parents are sad, but let them help you if you can. If you need to move back home while you get better, that is okay too. It is good to surround yourself with people that love you, emotional help, monitary help, and a place to rest. I know this is not what you want to hear, but since you have had this for a while, it is time to get all the treatment your body needs and get yourself into remission. You do have a long road ahead and it does not seem like school can be at the top of your list right now.

each person is different and maybe you will respond quickly to the meds and feel better. You will find so much information on this site and so much support.

You have a right to feel sad and cry. I think it is important to embrace what you have and face it head on. You seem like such a bright young lady and will do what you can to take care of yourself.

Please feel free to private message me if I can help in any way. My daughter also has her Crohns in her colon.

Hey hope thanks so much for all the support.

I cant quit my course i have less than 4 months of classes to attend in the next 6 months. I think that will be easily done rather than quitting now and redoing this entire year. I'm almost at the end now.

My parents are worried but they have managed to become my cheer group from home so its good. They are great don't get me wrong. But I'm not used to so much attention and the need for constant care. I like being independent and its taking me a lot of time to readjust and ask people for help.

But i guess its improving slowly. Apart from the exhaustion and the pain I'm much better now so the sun shines again in my part of the world.

Thanks to everyone for all the help and support

Sharon,

I am so glad to hear you are having some good days and the shine is shining
I just heard something today that I hope to pass on to my own daughter:

"Don't focus on what you cant do, but be thankful for what you can and look forward to those new adventures."


wishing the best for you.
g

ohh darling the only way i can help is to tell you i have taken azacol for nearly 20 years don't know if its available for to you try also to cut out milk and red meat although i do enjoy a good fillet steak as a treat. buscaban also helps not good with computers but if you can email me your address at tammy.ives@nhs.net i will gladdly get you some from our chemist and send but only if its legall in india as i know lots of things aren't in other countries luv n big hugs chin up xxx

Hey tammy,

I'm on Mesacol(mesalamine). I think its the same as Asacol. Ive been off dairy for almost a year now much before i was diagnosed and I'm a vegetarian. And right now my diet is pretty bland mainly rice bananas bread and occasionally eggs, fruit juices and baby food. So i guess diet wise I'm pretty set not to worsen my case but I'm mostly at risk for malnutrition. I may be put on pred or something similar when i go back home and visit the doc. He wants to discuss the meds with me before he prescribes them. Problem is I'm totally against steroid treatment because I personally think the risks far outweigh the benefits. I'm still hoping he wont prescribe them.

Thanks for all the support

Sharon, once your flare gets under control, you should try starting with the dairy products again, beginning with yogurt. Chances are that you will be able to build back your tolerance once your gut heals. Then you've got tons of things you'll be able to eat.
In the meantime, nut butters (very smooth, no scratchy bits) should be fine for you, and will boost your protein intake. Coconut milk should be fine. Get yourself a mixie and start making smoothies with these things and with low-fibre fruits, such as bananas and apples (as suggested by others) -- you should be able to do this even in your dorm. Cooked carrots should also be OK. (Can you get your hands on dairy-free carrot halwa?) French fries are also probably OK -- potatoes are pretty low fibre. Also see if you can get some liquid multivitamins -- look for multivitamins for children -- and make sure you're consuming enough B12 and iron -- it's easy to become deficient in these important micronutrients.

As for steroids, consider what's better: starving to the point of having to drop out of your program because of malnutrition-related fatigue and lack of concentration, or relying on steroids for a few months (or longer, until you find other medications that work for you). Steroids are not the end of the world, and if they can calm your guts down enough for you to start eating a more balanced diet again, a short-term course of them might be just what you need to pull through.

Good luck!

Yea my GI has told me to same with regards to dairy. As soon as my gut heals most of my intolerance will reduce i should be able to tolerate yogurt if not anything else. But I'm wondering if that is permanent. Once u stop the steroid and start eating normally. How long before the next flare?

Nut are something i have never managed to take for years. Nope dairy free carrot halwa is tough here.

Yup I'm going crazy with multivits have around 2-3 supplements from calcium to b12 to god knows what all i take per day. I feel much better now I'm on them.

Thanks

from 17th to 24th you moved from worst to better, hope this trend gets better and better and you will be back to normal.
currently my son is on last week of Modulen diet and mesalazine 25mg x3 a day.So far he is doing good.
sorry I cant help you much on your questions but I follow your thread because I have the same question as yours...
"How do you know if your med's are not agreeing with you?"
hope you(as well as me) get the suggestions from senior members

wish you good luck for both health and career....

Madhav, Hyderabadi

Hey Madhav

Yup i think a lot of my recovery is coming to terms with stuff. Because the pain and diarrhea were always there. Yea i had a very bad flare after coming back to campus but the knowledge of the disease and everything made it much tougher. So i now i have started to try coping today i managed to get up get dress(a little more than usual) and attend classed from 9 am till 9 pm. I have a terrible stomach ache and i seem to have developed an infection on the region where my tonsils used to be. (I just had a tonsillectomy just before i was diagnosed with crohn's.) So my ear is hurting and i have a mild cold. And i haven't slept well at night because i was worried and in pain. But surprisingly I'm all ok and full of energy. So a lot of it is a mind game for me now. Its not brilliant or easy but its a start . And if i can pull this off i think i can feel much better about handling this the entire overwhelming fear and panic is at least receding.

I hope the modulen diet works for your son i would prefer that to steroids any day. Before i was diagnosed i would always go on liquid diets for my diarrhea and pain for a few days and it would work like a charm. I wish your son a lot of good luck and health.

The ambiguity and uncertainty and the general lack of understanding makes it more difficult to handle sometimes but we can always hope.. Lets hope we get some answers soon

Sharon

Hi,

I had symptoms to crohn's, but looks like a milder form. I am from India too. Someone told me to take fenugreek. Keep fenugreek in moist condition until it sprouts. Then keep it in fridge for later usage. Take two or three spoons in empty stomach with yogurt. After 1 hour take food. My digestion has improved and gastric has gone. Feel very much better. Continue for long time may be months. Also eat idly or dosa in morning. It has got the fermented good bacteria. These are really helping me.

Take care

Prabha

Glad to hear you are feeling a bit better (at least mentally!) about things, Sharon.

I have done two rounds of Prednisone in my 13 years with Crohn's, and while it is not a terribly fun drug, and the side effects do indeed suck, they are still using it because it really does work. If your doctor recommends it, I hope you will at least consider it. It sounds like you are very sick at the moment and a course of steroids could get you on the path to recovery.

Hang in there!

Laura

Hey Laura,

Yes i know I should stop worrying about the side effects and stuff and look at things in the short term. Basically look at improving the quality of my life now. Yea im slowly coming to terms with it. Wont be thrilled if they put me on pred but i will take it.

I went to another doc (rather my parents went.) (wanted a second opinion and my present GI is unreachable half the time apparently has a 30 sec rule to answering queries) So the new doc wants to run me through another set of tests (ANA, CRP, IgA). He is like it may not be Crohn's he wants to confirm since most of my other blood work is good. However small the chance is I'm willing to take it(I'm surprised that i'd prefer going back into the undiagnosed club than hear its crohn's). In the mean time he wants to put me on Budez CR(Entocort) Which i haven't yet started thanks to the infection in my throat.

On the bright side I'm going home(only to be poked prodded and get tested and run around the docs and spend time in waiting rooms) But still i'm going home

Fingers Crossed