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I'm Getting Worse.. frustrated!!

Hello Everyone!!

I'm new here and decided to look for some support since nobody in my family or friends don't really understand what I'm going thru and some of you might be able to relate. You see everyone in my family don't understand that I suffer from all sorts of pain, not just pain in the gut or that I just go to the bathroom a lot, I suffer in everyway it's mentally draining and I just wish people would stop saying you got to watch what you eat. I get very annoyed when people in my family tell me have some of this, don't eat this and they act like they are some miracle doctors. They don't see what I really go thru like me running to the bathroom like 5 to 20 times a day or I spend up to several hours in the bathroom at one time because it's like my anal is a pipe or faucet and I can't stop pooping with category 10 pain or before it hits me and I can't move because of the abdominal pains and cramps I get or when I'm driving I'm scrambling to find a bathroom because I might just shit myself or when I have an urge to go the bathroom poop doesn't come out of my butt but muck, slim and blood comes out and its all topped off by me puking bile in the mornings or puking the dinner, lunch etc. I had. I'm tired of this, tired how I feel and I'm getting worse not better. I just don't think I can beat this let alone manage it.

I was diagnosed with Crohns in 2000 and noticed signs of this in 1998 when I kept going to the Hospital after seeing pools of blood in the toilet bowl. It took 2 years to get diagnosed and I've taken many different drugs in the 15 years. I'm getting worse and the only time I was in remission was probably 5 years ago for a short time of 6 months. I'm not scared of dying if I die from this. I won't suffer anymore if I go.... This is torture!!!! Problem I have is I have a 3 year old daughter I want to see grow up. She is the joy of my life and she puts a smile on face even if I'm suffering. All I want is a quality of life anybody would want. I suffer everyday and I don't even have good days anymore like I once did when I was introduced to Humira injections but that stopped working for me. I'm currently on Entyvio and my 3rd injection is a week away and I'm not very positive about any of this or this drug. My specialist tells me I've taken every drug on the market and his hands are tied. I guess surgery will be soon approaching. So much more I want to say but I'll leave it that.

Cheers
 
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DJW

Forum Monitor
Hi Greeko,
I'm sorry you've had to suffer so much. I understand how you're feeling.
I had a 20 year remission post surgery; none of the treatments worked.

Sending you my support.
 
Welcome to the forum, Greeko

I understand too the frustration of dealing with these symptoms for so long and the added stress of those around you not understanding. It does seem that when you get diagnosed with Crohn's everyone around you becomes and expert on what you should eat...I guess it seems so simple to them that we have soemthing wrong with our digestive system so we should change what we put in it. If only it were that easy.

As tough as life is, it sounds like your little girl gives you every reason to try that next treatment (if there are any that your doctor hasn't considered) or to have surgery so that's a wonderful thing.

If you want to tell us more about where your Crohn's is located etc. and which meds you've already tried then I'm sure there are forum members who may have suggestions of a few others or perhaps trials you can look into. And I know there are many people on the forum who have regained a god quality of life after surgery and would be happy to answer any questions and share their experiences.

Best of luck. I hope Entyvio kicks in soon!
 
Hi Greeko,

sorry to hear you have to go though such a hard time. I can definitely relate. For my family and friends it's hard to understand as well and they often gave advice as well but I explained to them that this disease is so individual, no one can tell you what would be the best diet for you, so everyone has to find out by himself. Now I'm the one my friends "consult" when they think they did not find the "right" diet to minimise stomach issues and so on (but I can't tell anything either, I'm not a doctor).
I was very desperate as well when I realised that I did not tolerate Humira and it did not work as well but there are many other opportunities as well and research is ongoing. There are a couple of medications in the final phase III of the trials so they will be available in a a few years.
What about Simponi for example, and what about the SSI trial in Vancouver?
It's only your 3rd injection of Entyvio (I did not know it's available as injection as well as infusion via i.v.), right? So probably your symptoms improve in the next few weeks. What does your doctor say about the effectivity of Entyvio?

Best wishes!
 
I was scheduled to join a phase 3 study and had to go thru the protocol of testing etc. to get accepted. The final thing I needed to complete was my colonoscopy. Bad News happened and they couldn't complete the colonoscopy because I have colon and bowel strictures. The GI tried with the smallest scope.. a baby/infant scope and still couldn't get past the stricture. It was very discouraging to hear that they couldn't complete the colonoscopy and I heard the GI say I can't we need to stop. Now everything made so much sense why it was so painful when I went the bathroom. At first my GI considered a balloon procedure to open up the opening but he said the success rate is low... so I was put on Entyvio the sister drug to the study I was going in.

In my previous message I said Entyvio injection but it's an infusion I was rambling on my bad... When I first got diagnosed I was put on safalk, pentasa , enemas then was put on Imuran and Prednisone for forever and was put on Remicade which was a complete failure. Remicade didn't work at all and this is why I think Entyvio will be a failure for me.

I entered the Humira study and that was a success and I saw improvements in everyway, I had good days and gained 45 lbs. But after 3 years of humira injections which I was on a weekly dose the side effects were killing me the back pain in the morning was unbearable had to be helped out of bed or crawl out, the joint pain in my hands and knees were dreading, scaring and break outs on my back were scaring me, vision problems and the list went on. My specialist decided I try Stelara while we wait to get in the study and now that think about I think Stelara was somewhat working for me but I'm not sure because I'm so sick now.

Currently on Entyvio like I said and its been a struggle. I have crohns in my colon , ileum and who knows where else.
 
I'm sorry that you could not be accepted for the study and that you feel so bad at the moment.
I know two guys who failed on Remicade but do great on Entyvio, so there is hope!
One of them was on tacrolimus for a year (which was really effective) because nothing seemed to be working, then Entyvio was released.
I have been dealing with side effects of Humira as well (but totally different ones), by the way, unfortunately.
What about prednisone for short term improvement of the symptoms until Entyvio kicks in? Did you ask your GI about that option?
EEN could help short term as well but I would not expect it to be effective long term (or manageable long term), at least, for me it was not long term.
I don't know if adding on MTX or azathioprine with Entyvio is possible, for Remicade for example it can improve effectiveness (there are studies which found that).
I'm crossing my fingers that Entyvio shows effect very soon.
 
Hey Charlotte,

I'm scheduled to see my GI soon so I will ask about adding some prednisone to the mix. I know in the past when I took prednisone I had major mood swings, moon face, felt like my blood was boiling all the time and could hardly sleep. I hated being on it but will consider taking it for a temporary relief if it helps.

I already suffer from poor sleep and wake up at 4am everynight and fall asleep again around 5am. It's so bizzare that since I've taken Entyvio I wake up everynight around the same time.
 
Entyvio works by a different mechanism than Humira and Remicade (which are really similar) so there's no reason to believe it won't work for you at this stage. Though I understand feeling despondent and Entyvio does take a lot longer to work than Humira or Remicade.

It's always interesting to hear from those who have a good response to one anti-TNF alpha and not another which goes to show that it can be worth trying another anti-TNF alpha med if what you are on isn't working.

Agree with Charlotte's suggestion of a fast-acting treatment to get you through this bad time and the possible addition of methotrexate or aza/6mp. Methotrexate gets to therapeutic levels faster - roughly 6 weeks instead of 12.

There's also anti-MAP antibiotic therapy to add to the list of treatments to try if Entyvio doesn't work for you. And with disease in the ileum and colon you may be a good candidate for a drug called Mongersen which should be available in a couple of years (currently in trials) and that seems promising.

Have you had upper endoscopies as well as colonsocopies and MRIs or CT scans to assess the extent of your disease? Too often it seems that comprehensive imaging isn't done and it really is a matter of "who knows where else" there is disease.

Is the surgery your doctor is proposing a resection/strictureplasty or to give you a stoma?
 
Hey Greeko,

Welcome to the forum, sorry to hear you've been struggling for such a long time. Can certainly relate some - 9 years and never hit remission, just periods where symptoms are mild instead of severe and have been steroid dependent. Without Prednisone everything worsens becoming unnervingly sketch fast, I don't necessarily like its side effects, but it's better then crohn's and passing out from pain. Almost a decade in and I still find myself terrified by the prospect of a chronic illness, of the cycles and requirements its demands.

I tried Entyvio and couldn't hold out longer then 9 months even with maintaining high prednisone doses and adding methotrexate into the mix. Saw some improvements regarding inflammation but nothing worth the side effects suffered and couldn't maintain it due to abnormalities. The MTX did far more for my symptoms once it built to therapeutic levels settling down the diseased portions in my upper GI which other meds weren't touching.

Keep your patience and hope, the others have mentioned some good ideas to discuss with your GI in attempting to create a bridge and get you through the time it takes to really check out Entyvio's potential.

While studies etc. claim therapeutic levels occur around 6-12 week mark my experience and the experience of my GI with other crohn's patients on Entyvio was that it was taking double that or longer since most seem to be in an extremely diseased state when beginning the drug. That said, last I checked, many on the Entyvio support page are seeing improvements where they've failed or been nonresponsive to TNF blockers, sometimes taking upwards of a year to see significant improvements.

It's okay to be tired, to be frustrated, to be downright done with it all and completely drained. The love of and for our family and children especially are great reasons to continue getting up every day to face whatever may be in store. You are as deserving of life, of a quality life, as anyone else including the love of that little girl of yours - regardless of where your health may stand. We all need something or someone to hold onto, especially during the difficult times, and it sounds like you are very grateful for what you do have at this very moment. Wishing you all the best as you work with your GI to get things to a more tolerable place.
 
Hey 24601

I haven't really had any upper endoscopies , I did have one a few years back forget what they called it but they took a camera scope that went down my mouth and throat to see why I was puking so much, they determined everything looked fine and mostly was a reflex thing to the pain and pushing that made me throw up. Also to be honest haven't had a MRI or CT scans done in some time maybe I should ask my GI for them.

My GI wants to avoid surgeries at this point unless it's absolutely necessary but I don't think I can last with what is going on right now, I'm terrified that one day things will just rupture and tear etc. because it's very hard to pass bowel movements due to the strictures.
 
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duh panda and everyone thanks for the time and replying to me, its very helpful stuff I'm hearing from all of you.
 
Sometimes I feel my doctor doesn't know how sick I really am. I think it might be time to complain more than usual or change doctors
 
If you feel like you should change doctors you probably should. I was surprised that my GI knew quite well how sick I felt in the beginning of this flare-up even though he does not show it that much (maybe self-defending behaviour in order not to think about every patient over and over again and again?). My GP instead was quite worried and did not really show it either but when he suggested me being admitted to hospital (what I refused) I knew he does worry and does know how sick I was. Thanks to pred it's a bit better now.
Concerning sleep: Do you know essential lavender oil? You can put some drops on your pillow or aside your pillow, it can be quite helpful to fall asleep more easily and to probably sleep without waking up at 4am. What about autogenous training before you want to sleep? It can helps settling down when you have many thoughts in your mind, maybe just look for some videos online to see how it works. You might need to practice a bit but after a while it works effectively, for me it does.
 
Had my 3rd infusion of Entyvio and just added steroids 3 days ago. Things are bad... pains have been the worst I've ever felt and the bowel movements are more frequent and so different every time...
 
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