HealingWell
Search Close Search
☰

Having Crohns ruined my life

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/8/2013 7:49 PM (GMT 0)
I hate going outside people stare at how skinny i am none of my clothes fit im always puking and in pain...
I had 3 doses of remicade so far its helping a little but im still experiencing flare ups which really suck... I would love to join a support group get out there meet others with my condition to help me.
Posted 8/8/2013 9:54 PM (GMT 0)
Leah - are you only receiving Remicade right now for your Crohn's? Your weight is dangerously low. I would discuss alternate forms of nutrician, like TPN to get calories while giving your bowels a rest. Also, talk about something for the pain. Will you GI give you some pain meds to hold you over while the Remicade kicks in? You really need to advocate for yourself and your current consisting is not acceptable. It may start with an ER cisit tow evaluate your current state. Good luck!
Posted 8/8/2013 10:35 PM (GMT 0)
I was on Entocort a Steroid for 3 months, 9mg a day. It toned the pain down a little... But not enough to help me.
Remicade is the only thing I'm recieving. I need more help and advice I don't know what else to do. I have Anxiety and pain as I write this. Making me feel feverish and nausea.
Posted 8/8/2013 11:02 PM (GMT 0)
Hi Leah,

I'm 21 and I have been dealing with Crohn's for four years. If you want to e-mail me so you can talk, feel free to. You can find my email in my profile by clicking on my username. Maybe if you have someone to talk to and relate to you can start to overcome your depression. I know that I wish I would have had someone to talk to when I was just beginning to experience my disease.

-Kalee
Posted 8/8/2013 11:19 PM (GMT 0)

Leah,

I replied to your other post, but just want to reassure you again. When Crohn's has been allowed to take hold, it really needs to be treated aggressively. Entecort can be a good drug, but you really should have been on Prednisone to really combat the disease.

Again, try to stay positive. Give the Remicade a chance. You should also ask your GI to do some follow-up diagnostics to see how things look. Preferably an MRE, (MRI).

Good luck, things WILL get better. Keep posting. You'll get alot of good advice here.

Posted 8/8/2013 11:38 PM (GMT 0)
hey girl. I know how you feel. last year, I was 84 lbs and I hated going places. everyone always stares and assumes that you're starving yourself on purpose. it makes me so uncomfortable!!

I would HIGHLY recommend Absorb Plus shakes. they are great for flares and for when your gut can't handle food. they come in berry, vanilla, and chocolate flavors. I drink them every day in addition to following the paleo diet since I've lost 7 lbs again this past month. blah. my doctors really wanted me on TPN last year but I decided to try paleo instead. that's how I gained some weight- was up to 102 lbs until this current flare really hit me. the shakes are easily absorbed and don't have weird ingredients in them. it's whey protein.
Posted 8/9/2013 1:30 AM (GMT 0)
Being that underweight will make a whole ton of GI symptoms worse and is actually dangerously, unhealthily low. If you want to get better, find a way to put on weight by hook or crook. If you have to have surgery, you are not in a good position to recover from it as you barely have enough resources to keep going, let alone do major healing for months from surgery.

Entocort is perhaps not quite as effective as Pred but 9mg a day should still have resolved the pain if it was caused by Crohn's inflammation. That's what steroids do, they get rid of inflammation literally overnight. Every time I went on iv steroids, my 10/10 pain would be completely gone in a day or two.

Basically, you need tests to find out what's causing your pain. If it's strictures which don't respond to drugs, for example, they will need to be treated surgically. In the meantime, if you struggle with solids, drink several Ensures or Ensure-type drinks a day. It's not really hard to get 2000-3000 calories a day through liquids alone. Expensive perhaps, but not hard.
Posted 8/9/2013 1:58 AM (GMT 0)
Thar much weight loss is dangerous and can make CD worse. Talk to your GI ASAP about TPN and/or feeding tube. An ER trip might be in order for temporary pain relief and fluids. May be worth getting admitted for a few days. PLEASE get help soon for it.
Posted 8/9/2013 2:36 AM (GMT 0)
I've been crying for the past year I don't know what to do i feel like nothings helping I'm crying my eyes out I have a son i can't even take care of i can't even care for myself... I have NOBODY to talk too I have no friends nobody wants to be around me... Im going through more than CD.....
Posted 8/9/2013 5:22 AM (GMT 0)
I am sorry you are goin through this. I too am going through a tough time with my Crohn's and am currently on TPN and tapering prednisone to get my body ready for surgery. At my lowest weight I was down to 110 pounds and my doctors were very concerned. This makes me very worried about your low weight! At 110 pounds I had no energy and was very ill, so I can only imagine how you feel! Please call your doctor and express your concerns. Entocort never did anything for me. I am currently on 40 mg (but tapering fast for surgery) of prednisone and feeling much better - and have gained 10 pounds very quickly. Talk to your doctor about a pred taper and pain relief!

Do you have any family support? Now is the time to ask for help from family or friends. You need to focus in your health so that you can be there for your child. I completely understand your predicament. I have had to rely on my mother taking my son to daycare every morning and my husband cooking and cleaning all while I sit on my butt and blow up from steroids. It's hard. But I know it's for the best in the long run and I will be a better wife/mom for it. Please stay in touch and focus on getting better. There are better days ahead!!
Posted 8/9/2013 6:26 PM (GMT 0)
LEAHXO,

You being in Toronto, Ontario ask your fellow Crohnies in the region to chime in. Being here in the states the system works a bit differently.

But eat you must, Three shots of Remicade is not enough , you are 8+ weeks in, You may need another infusion to get the effects really started. Entcort is helpful but is not the end all. I've done both. have your B12 and Vitamin D levels been checked? When in doubt call the GI if no help get to an ER. At 80 you electrolytes have to be out of wack. Gatorade, Ensure.

You really need to seek out the doctor's advice for pain.

T
Posted 8/9/2013 7:50 PM (GMT 0)
You should also talk to a psychiatrist. You sound depressed, and this just adds to everything. It piles on.

Crohns has NOT ruined your life, kiddo. It's a disease. Only you can give it that power. Talk to your doctor and get some medical help for the weight and the other issues.
Posted 8/9/2013 8:18 PM (GMT 0)
I feel like it has, I just came home from the walk-in clinic.. You're so right my doctor referred me to a Therapist. & she gave me a hug... lol I felt better but I know I am going to feel down again pretty soon.. Im lactose so i can't drink any Ensure they told me try baby formula but...? Really? And Align the probiotic? Has anyone tried it?

I know there is worse conditions and people are suffering way more, but adjusting to a new life at the age of 22, its like starting all over again like a baby.

Posted 8/9/2013 11:08 PM (GMT 0)
Align worked very well for me for several years then just stopped working one day about 3 years ago
Posted 8/10/2013 12:01 AM (GMT 0)
Forget about probiotics, vitamins, psychiatrists and all that jazz for now. That stuff has its place but not when you're that underweight. Neither mentally or physically will you be capable of benefitting from it. Ensure is considered suitable for the lactose-intolerant by the way, but if you don't want to drink it, then you should - must - find something else.
Posted 8/10/2013 5:04 AM (GMT 0)
I agree with NCOT, I am very worried about you! I think if you focus first on your health the other problems will fall into place. Maybe because I am just starting to feel better after my worst flare ever - I literally worried for my life and you're weight and condition sounds worse. If I were you (and this may vary since I am from the US) I would go to the ER tonight to get IV fluids/nutrition/and pain relief. If they admit you, great. If not, make sure you get some scripts to take home with you.

Also - a good calorie rich smoothy: almond milk, banana, peanut butter, honey. Dairy/lactose free and easy on the gut. I also like to eat eggs when sick. They're easy on the stomach and full of vitamins (don't forget the yolk!).
Posted 8/10/2013 8:37 AM (GMT 0)
heya thought ill throw my 2 cents in,defiantly go to the er for help with weight/pain mangement and perhaps a better treatment plan,being that under weight really knocks u around i was around 45kgs at my lowest found it difficult to do anything, if u are lactose free try fortisip i used those wen im real sick as a meal subsitute and the are lactose free n taste okish .
Posted 8/11/2013 9:34 PM (GMT 0)
Aw Leah, the first time I got sick I lost over 45 lbs and was in the hospital weight around 85-90 lbs. When I got out of the hospital my weight stayed at 90-something lbs for a while but my face was all puffy from the prednisone so I feel your pain. People used to ask me about my weight, how I lost it, etc. Seriously, weight is not an okay topic of unsolicited conversation for ANYONE! So those people you just keep your head up high and try your best to smile.
As far as gaining weight, I had to see a nutritionist in the hospital and she and my dr agreed, eat white bread, white rice, drink ensure - DO NOT DO THAT. Yes, it makes THEIR job easier bc less residue, easier on the system but you need whole food to heal. Try to stay away from meat and dairy if you can, and eat whole grain (like quinoa) and cooked vegetables (easier to digest). Take probiotics (they have to stay refrigerated). You are still having a lot of symptoms? Good luck, you are not alone!!! xo
Posted 8/12/2013 2:07 AM (GMT 0)
I understand your feelings at my worst I was a depressed mess..My family did not understand..I was a shadow of myself, I could only tolerate baby food and meal replacement shakes, all the meds made me feel worse, my husband did not understand, definitely did not feel intimate, I had four kids at home, my career I felt was going to a long term disability, I had elderly parents and 4 kids that needed me..I rolled around the floor in my bathroom at night with tenesmus..I was like that for 2 years..2004-2006..I went on a steroid with a high dose antibiotic therapy that pushed me somewhat into remission with milder bouts now..I still worry about getting that bad again in the back of your mind..
Posted 8/12/2013 1:17 PM (GMT 0)
I'm trying my best... My specialist told me he won't prescribe medicinal marijuana.. It helps me eat and keep sane from this disease. I drink alot of coconut water the natural one in the bottle. I cut out all juices, pops, shakes, smoothies... ETC.Just water and coconut water.

I eat what I can... My next dosage of remicade is september 17th Hopefully by the 5th I feel somewhat better.. But for now I am still 80lbs from 135lbs it sucks... I understand everyone has been threw it with Crohns... Its hard to adjust to a new life after 22yrs of living a normal one.

Posted 8/12/2013 11:11 PM (GMT 0)
Coconut water is great for you! If you can try and find a kind without a lot of sugar, but the fact that you are drinking that will help you. Water was very tough on my stomach when I was very sick. Can you eat anything? I know it's tough from either 1) the stabbing pain or 2) actually keeping it inside but if you can start with anything just try to gain a bit of weight. And if you can see a different therapist maybe? In some states there are several conditions for medicinal marijuana and Crohn's is often one of them. I never tried it but if you think it'll help then talk to your dr. Just remember you are NOT ALONE and you will get through this - this is the worst part, and it totally gets better. Do they have you on prednisone? That is sometimes a necessary evil, I don't recommend it but when I have been forced (as in too weak to protest) it did help calm the inflammation; just caused me a lot of other problems. Do you have any family members who can help you?
Posted 8/13/2013 12:57 AM (GMT 0)
I am currently on Remicade it will be my 4th dosage in September, and I was on Entcort but that was only until I started my Remicade so I no longer take those. I take reg. tylenol because they think i'll get addicted to narcotics... If prescribed, which I don't get what am I suppose to do when I'm in pain...
Posted 8/13/2013 1:19 AM (GMT 0)
Narcotics are addictive, to be fair. Not the occasional dose, but if you take them every day, then, yes, your body quickly builds up a tolerance to them.

When I was in bad enough pain that didn't pass within a day or two (bad enough to make me curl up on the floor and groan in pain, with no let up), I would go to A&E. There I would usually get admitted and be given morphine, fluids, and iv steroids. And as a hospital inpatient, I got various tests done much quicker than I would have done otherwise: abdominal x-ray, CT scan, and a colonoscopy. One time I got a blood infusion due to severe anaemia.

Am at a bit of a loss what to suggest otherwise, and I do think you need tests to find out what your Crohn's is doing anyway. Pain is debilitating and I am sympathetic to wanting better pain relief than tylenol. But you should also try to figure out why you are in so much pain as well.
Posted 8/13/2013 8:04 PM (GMT 0)
Hi Leah,

I have been worried about you and hope you are coping. I read where you mentioned coconut water. From what I understand, coconut water is a natural laxative, so you may need to check into that. It may be adding to the problem instead of helping. Well wishes. -Joy
Posted 8/13/2013 9:05 PM (GMT 0)
Hi Leah - How are you doing? Just checking in - Hope you are feeling a bit better today!
✚ New Topic ✚ Reply
12