Posted , 6 users are following.
I was wondering if anyone could provide input on treatment/medication options for Crohn's/IBD
I have never been treated with meds for this and the symptoms are unbearable.
0 likes, 17 replies
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paul75665 albert_99155
Posted
Have you had a confirmed diagnosis of Crohns Disease? How long have your symptoms been going on?
Steroids are usually given to patients who have CD, but these usually have to be prescribed by doctors as there a few types that can be used, and its down to the doctor to find which works best for the patient.
albert_99155 paul75665
Posted
it’s funny you ask this question because many things have been ruled out, I feel like my gastroenterologist has pretty much given up because what I go through does not follow a typical pattern of an average patient. I was told by a colon rectal surgeon that what I am going through is complex, not uncommon or unheard of, but just a very complex case. By definition, my ailment does meet the criteria of Crohn’s, however I think what started this all were other underlined issues. I now have a prolapsed rectum which is adding to the problems. But a colonoscopy showed diverticular and many other damaged parts including swelling and inflammation which, to my knowledge, is what classifies Crohn’s. I have more constipation then diarrhea but at this point, I believe the constipation is coming from the narrowed intestines and prolapsed rectum because even when I take prescription laxatives I am unable to pass anything including gas. All in all, inflammation is my biggest problem which, to what I know, is inflammatory bowel disease. Although the prednisone helps, I just thought perhaps there why something less generic and more specific to target the G.I. tract and the information in it. This has been a very frustrating process for many years as for quite some time I never looked or acted sick. It was not until last year when I lost over 30 pounds and looked sick that people started to take me seriously. And to confirm The colonoscopy showed a prolapsed rectum and other physical tangible damage.
Crazychicken albert_99155
Posted
I am very similar constipation is what I suffer from mine started in tiredness after pushing at doctors I had a blood test inflammation markers were very high my bowl started to knit due to inflammation and then I went straight on the injection I find a fresh half lemon in half or pint of water has helped me but beware not damage teeth the other thing I have done is flax seeds I started with a tea spoon a day built it up to 2 to help. I found this worked for me as I had the same issue with laxatives. chickpeas are another thing that I find helps. do you feel sick a lot? my mum has diverticulitis and can't eat seeds.
albert_99155 Crazychicken
Posted
thank you so much for this information! I feel like I’m reading my own biography LOL all the things you mentioned are things I also suffer from it. I do feel sick all the time, it is a bloated and full feeling like I ate a large meal and or have to go to the bathroom, but neither is the case, I just have that feeling nonstop. I actually love flaxseed as well as chickpeas, so I would be more than happy to incorporate those in my diet. I have tried the lemon and water, it definitely does not hurt, but I am on the fence about how much it helps the situation. I was told I have diverticula but not old I officially have diverticulitis, it’s very frustrating because I feel like the doctors are playing it safe by being so broad. I was also told I had the signs of Crohn’s, but again was never officially diagnosed. It’s very frustrating because I feel like the doctors are playing it safe by being so broad. Thank you again for your response and providing this helpful information! It is much appreciated as I feel like I am the only one helping myself with the support of this group.
ben32650 albert_99155
Posted
I've been on all sorts over the years (sadly not the liquorice ones) for Crohn's. pretty much constantly on Azathioprine and then I was put on self-administered Humira injections for a few years. They were amazing and I barely had any flare ups whatsoever in that period. I was even flare-free for about 7-8 months after I stopped the course. Sadly, they started to not work so well after a few years (my markers were still running high and my clinician believed my immune system had adapted to them) so I was put on Infliximab which is administered in a clinic. Again, that's worked out amazingly well.
albert_99155 ben32650
Posted
thank you so much for this information, hue Marah is the drug I hear most about, I know it is an injection but I will just have to get over it, and be an adult as I hate needles. However the symptoms of this disease are well worth a shot every day. My problem is my G.I. tract gets so inflamed it causes a temporary blockage and prevents me from expelling anything including gas stool you name it. Thank you so much for this information I am eternally grateful as anything to relieve the symptoms is a huge help!
albert_99155
Posted
Please excuse the spellings, I find this site is not the best with AutoCorrect and spellcheck and tends to spell things phonetically.
ben32650 albert_99155
Posted
Hey, so sorry to hear of your extreme symptoms. Sounds like you're having a rough ride of it. Also, I couldn't give a damn about spelling or grammar mate, I got the message. Auto-correct is near non-existent on a mobile device, which is deeply frustrating.
As for the Humira injections, I shouldn't worry. They are pain-free but yeah, it does take a bit of getting used to when you first start. Whether they are right for you in your case is another matter.
All the best!
albert_99155 ben32650
Posted
Thank you so much for this, and I truly appreciate your compassion for the situation as well as understanding regarding the spelling grammar, as a former English teacher it drives me crazy LOL. Humira was what I thought would be the most effective. I do agree that I would most likely get used to the fact it is an injection. At this point, anything is worth a shot- no pun intended lol. I have an appointment with my doctor later today, I am definitely going to discuss this topic.
Crazychicken albert_99155
Posted
I am sorry your symptoms are unbearable. I have had steroids for a while this did reduce for a while but there are side effects I personally put on a lot of weight and my skin has never recovered and is extremely thin. I managed to avoid surgery on my flare up of chrons recently I started having injections weekly of adalimumab this worked for a while but then stopped I'm now on another treatment injecting 6 weeks called ustekinumab I found must drugs have side effects and diet is key. for example I can eat spicy foods no problem but mill is a trigger for me and triggers can change.
what symptoms are you having? I also find stress for me is a trigger as silly as that sounds.
albert_99155 Crazychicken
Posted
Thank you so much for sharing this information. The only medication I was given was prednisone which I know is the generic anti-inflammatory. I feel like diet does not do anything for me. I always say my stomach is bothering me but really it is my bowels and G.I. tract. I have a prolapsed rectum however I do have a dish and all problems as seen on my colonoscopy I have inflammation and damage and diverticula. My main concern is constipation, not the typical kind, but my lower G.I. tract gets so inflamed it blocks anything from being expelled including gas
stephaney28634 albert_99155
Posted
Hi Albert, I suggest you speak to your consultant about infusion treatment or other treatments that may help you.
albert_99155 stephaney28634
Posted
thank you hopefully it goes well
Twiglet.12 albert_99155
Posted
Hi all, I have Crohn's disease, I was taking inflixamb but has stop working after 16 months, I will soon be starting ' Stelara' Untekinumab any feed would be great, I have tried Humira and Methotrexate, Thanks Twiglet,
Crazychicken Twiglet.12
Posted
Hi, I was on humira for a year but it stopped working I started ustekinumab in August I am finding this is helping and injection is less painful I always get a running nose for around a week to 2. this drug has really helped me started to get my life back I had an infusion to start with and my injection ate currently changing from 8-6 weeks as my body absorbs quickly. I hope the drug works as well as it has for me do you have any questions?
albert_99155 Crazychicken
Posted
Wow,
Thank You so so much for sharing this! I have heard a lot of good things about Humira. Personally that was the medication I wanted to try. i have never heard of Ustekinumba but i am going to research it. At this point I am so frustrated with this condition I don’t know whether I am coming or going anymore. You guys have been my saving grace, no one understands this problem in less they have been through it themselves. I thank you so much again for sharing your story with me, it is more appreciated than you know!
Crazychicken albert_99155
Posted
morning I know what you mean it's nice to speak to people who understand flare ups and how it affects us. good luck with your treatment your not alone feel free to drop me a line anytime 😊. Do you have an appointment with your consultant soon?