I'm 28 and have crohn's disease. I have been on humira for 2 years which had worked well. The past few months, however, I have been suffering from a debilitating flair up. My Dr upped my dosage but it hasn't made a difference and am now back on steroids. I was wondering if anyone else had experienced this with humira? And if anyone had had success with any alternative medications?
View 7 Repliesdespite using strong painkillers, oxycodone-both long lasting plus short acting plus amitriptyline for sleep plus topical ointment, I cannot get on top of the pain or swelling. I started Stelara in December after DMARDs, Enbrel & Humira failing. I'm also on 7.5mg Prednisone daily. I can't cope much longer, this flare started in November. I suppose I should be grateful that my skin is clear but the pain in my joints is horrendous. My knees, hands and wrists are so swollen. Mobility is crap, I'm virtually crawling to get upstairs, getting dressed is so difficult and painful. I'm seeing OT in 2 weeks plus my rheumatologist on 8th March, also I'm seeing another rheumatologist in may for 2nd opinion because I'm not convinced my current one is expert in PsA. I've been going to hydrotherapy for a few weeks and am going to continue as a paying client because it's been good for me mentally and I don't want to sit around waiting to become completely immobilised. My knees are like melons today, should I rest, elevate or what? Sorry for negativity but I've just about had enough
View 38 RepliesI am a 24 year old who works a 12 hour rotating shift pattern (including night shifts). For the past 6 months or maybe more o have had upper left abdominal pain (cramping/aching) and more recently lower pain (sometimes across lower, sometimes left and sometimes a specific place on the lower right). I put it down to IBS due to shift work. My partner convinced me to see the GP as I have a family history of IBD. Oh and my bowel movements vary from constipated (less than once a week) to lose (not diarrhoea and multiple times per day)
Had stool tests and blood tests. I expected them not to find anything to be honest and just did it to please my boyfriend and put his mind at rest.
Doctor phoned and said that "the stool test shows signs of inflammation indicative of inflammatory bowel disease". I couldn't really ask more questions because of where I was. Phoned in for blood results and told by reception that they were fine.
I have been referred to the gastroenterologist and have an appointment in 2 weeks.
I am tired all the time and find it really difficult to get out of bed, frequently have naps at work but put that down to shift working.
I don't want to take any laxatives because I never know when it will change between constipation and loose stools and when I'm working, I often can't get to the toilet.
I often have joint pain but I also have a knee injury and some hyper mobile joints.
I am so confused as to what is going on and hate not being in control of my body. I know I only have mild symptoms, I feel so alone (shift work doesn't lend itself to meeting people regularly).
I have been provisionally diagnosed with Crohns and have been on Prednisolone for 3 weeks, starting off with 40 mg a day and reducing weekly by 5 mg.
I am having terrible headaches and no releif from the abdominal pain.No other symptoms yet.Can I expect some improvement as time goes on in your experiences ?
My husband was diagnosed with crohn’s disease some time ago. It seems that he is not allowed to drink beer. I don’t know how he will be able to do this, since he is a great fan of beer. Why isn’t he allowed to take it? Can someone tell me?
View 2 RepliesMy wife has been diagnosed with crohn’s disease. We have no children yet, but we were planning to. However, this disease is something that surprised us. She manages to coup the disease with medications. However, we don’t know if this affects her fertility. What do you think about this?
View 1 RepliesI know something about crohn’s disease. However, there is something else that intrigues me. I was wondering if this disease can be manifested with haemorrhoids. As far as I know, those are two different entities, so I would like to know if they can be linked in any way.
View 2 RepliesI've had hearing loss now for a few years but don't know whether it's down to Work, crohn's or chemotherapy, anyone else?
View 1 RepliesI had my surgery in 98. I've been symptom free for over 10 years. I recently hurt my back at work and was prescribed Naproxen (Aleve) because of the new pain med laws. Well after taking it for a week, I just started vomiting large amounts of blood. I went to the ER and they were shocked to hear that this was prescribed this for my pain since they were aware I had Crohn's. Has anyone else had symptoms like this from Naproxen? Would it be a honest mistake or malpractice?
View 1 RepliesI had a blood test today as I'm being tested for Crohn's disease and a load of allergies however my blood was really thick and gloopy and would flow even the nurse said that it was unusual. She couldn't get much blood out either as it would flow so ended up having to use bottles that they use for babies because there nearly any blood. I'm just wondering what this could mean or if anyone else has had this before?
View 2 RepliesI've had Crohns for 20 years I have a structure but is under control with drugs but the tiredness and fatigue is terrible specialist isn't much help or understanding on this point how do others cope with it ? My bloods are checked regularly and are always fine. I sometimes wonder how I'm going to get through the day at work sometimes and don't have the strength to do anything when I get it at night and I cannot wait to get to bed even if it's to watch tv I wouldn't mind but I'm no party animal has anyone got any sensible suggestions please ?
View 37 RepliesI had a high transsphincteric fistula (multiple abscesses). CRS placed a cutting seton with fistulotomy in July. CRS told me that the seton would be in prob 4-6 weeks. It is now 8 weeks later, new CRS (first one moved), told me that he doesn't use these much as they are not tolerated well and that he thinks he will have to go back in and tighten it as it is not advancing. He says this is/can be a long process. Now I am to go back in several weeks to finalize new plan. Problem is, after surgery, I had Augmentin. The fistula track was not draining like it was supposed to and I got another abscess... after the fistulotomy and seton placement. CRS gave me Augmentin which I'm not sure really helped. So, I got a total body rash from the augmentin. I lasted 5 weeks before I was so miserable that I finally took oral steroids from Dermatologist with CRS approval. After I did two weeks of steroids, which helped tremendously, the rash came right back. Derm subsequently gave me a new prescription for prednisone (for one month taper!) and told me that it is a rebound rash after I stopped steroids. CRS says he won't do next surgery until I am off of prednisone for several weeks. Do I take the prednisone? or try to power thru the rash and not tear off my skin? How long will this next seton take to cut thru? wonder if it will get "stuck" midway too? More tightening procedures? Oh.. what to do?
View 1 RepliesHi I have just joined the forum and would like to know if anyone feels the same as myself or am I going mad. Was diagnosed with crohns in 2010 after doing the over 50 bowel screening ( I am 55) have been on several medications and had a very nasty abcess where you dont want one and had to stay in hospital 11 days. Last november I had been in infliximab for 2 years having infusion every 8 weeks and also taking mercaptopurine and tramadol for the pain, I now have infliximab every 10 weeks still taking mercaptopurine which I have been on for 4 years, the doctor asked me to try and stop tramadol but I only take 2 per day 4 on a very bad day, I have tried several times not to take these but when I stop the next day I feel bloated, very sick and its a struggle to get out of bed and as a full time carer for my disabled husband thats no good, it happened today so I took 2 tramadol and crawled back to bed and within an hour I felt a lot better, have explained this to 2 doctors and 1 wants me off tramadol and says symptoms are due to them and the other gives me a prescription and says if I need to take them to do that I am so confused. I take them because the option not to makes me feel so crap (pardon the pun ) has anybody got any advice please I hate this crohns
View 4 RepliesI have been taking Azathioprine for crohn's for some time and have been lucky not to have had any side effects. For a while I have had a sore throat but not needed any medication. When I read the possible side effects on websites they mention sore throats. Any one else experience this, if so have you spoken to GP or consultant.
View 3 RepliesI've been on mirt for 6 months. All going well until past 2 weeks. Now experiencing the dark lows, burst into tears over nothing, increased energy & weight loss. I strongly feel that meds are no longer working. Has anyone had this experience?
View 30 RepliesI am on week 8 on 20mg of flu. I was feeling EXCELLENT back to my old self even forgot I felt sad at one point..I thought it was all over.......5 days ago I started getting anxiety again, feeling depressed and the "doom" feelings again. Has this happened to anyone? Should I ask Dr to up dose is that the only solution?
View 11 RepliesI have been taking 25mg of Sertaline for 6 months and I have been great.The past week I have felt anxious and afraid.On two seperate ocassions I felt light headed like I may pass out and weak.My questions are the following:do you think my prescription needs to be increased?Do you think my period could play a part in this?Lastly,is this a form of a panic attack?
View 3 RepliesHas anyone else had this experience? I started out on a low dose and had great results. Now I am up to 1,800mg/day and it doesn't seem to be having much effect. I am actually ok if I am not doing anything, but as soon as I use my foot, it gets so hot I could probably fry an egg on it!
My story: was in a car/bike accident and ended up with the car parked on my foot. Broke all my metatarsals in multiple places, but things were not that bad until...SURGERY. After finally starting weight bearing I found I couldn't really feel my foot, but it worked. Then I had oral surgery and my world exploded. Insane nerve pain in my face and jaw which then transferred to my foot. Anyone else here with CRPS?
Oh yes, and shooting pains up and down my thigh and calf whenever I stand or walk.
Thanks to anyone who responds. Especially interested in those who found the gabapentin working at first and then not and those who are suffering from CRPS.
I am 50 and have been taking Tibolone since May 2015. The first few months it was brilliant. I could sleep better, no hot flashes or night sweats and libido was amazing. But the last 3 months things started changing. It seems that my body got used to it and I have bad insomnia again, night sweats are back , libido gone low. I am still taking it and hopping that it will work again. I did put on a stone in weight, lots of facial hair and in my legs too. My hair roots on my head have gone really curly . Has anyone experienced that ?
View 29 RepliesMy daughter's spleen has stopped working. She has sharp pain the the middle of where the rib cages meet(not at all where the spleen is. She has a high white blood cell count. Do you know what might cause a spleen to working. She is 28 and is otherwise great health,non smoker and no drugs either. They have her on morphine and gravel,also hooked up to an IV bag as she is not eating. No blood problems in the family history. She is a vegetarian so she may be low in iron. The hospital is at a loss for what to treat her for but ill next do a CT. They have done multiple blood works but nothing yet. Thank you for reading this and hope that you know something about why her spleen has stopped working.
View 1 RepliesI have been on flu 40 mg for 12 weeks now and it seems that in the last week I have been feeling worse again.
It's a strange feeling but I feel indifferent to myself and seem to not care at the moment about my actions and thinking that what I do is not a problem?
I was just wondering is it possible with depression to still have days when you feel down and want to give up?