Diagnosed at 30 after lifetime of pain

[missconstantpain]

Hi. I have always suffered with pain after eating and pretty much all the time and strangely I somehow thought that this was nromal until only a few years ago when it really was starting to get me down.

So I had the usual tests and fob-offs such as "It's IBS take some anti-spasmodics" or "have you tried cutting out bread?" Even an endoscopy showed up nothing - clear stomach, clear colon, apparently nothing physically wrong. If it wasn't for my persistence at going back to the doctor he probably wouldn't have referred me to the gastro again and I wouldn't have had that horrible barium-through-a-tube-up-your-nose-and-into-the-upper-bowel deal that I'm sure many of you are familiar with. I found that experience awful by the way. I'm lucky not to have had surgery yet, I know, but I found it very distressing. Anyway I'm glad I had it because the barium showed up abnormalities in my upper bowel which showed a thickened intestine. I was so relieved to finally know that it wasn't all my head and that it had a name but also terrified of the thought that it can't be cured and that I might have to be in pain forever or surgery etc.

Now I've been on steroids for 2 weeks and was assured by my doctor that after a few days the pain would be gone and was also put on Pentasa to stop it from spreading any further. But the pain has not gone and I'm even waking up in the night in pain with it now which is stressing me out even more. My doctor is leaving soon and he's the only one who really understands which is a shame. I'm just hoping that when I go back to the gastro specialist in July he'll have some more options for me.

I really want to be in remission with this. Just a few weeks off from the pain of this 24/7 365 flare up would be heavenly. No pain killers work. I'm considering asking for morphine but I'm probably too young to resort to that yet I don't know. I wish I could just take my intestines out! Can anyone help with any suggestions? The only pain relief I use that works even slightly is a hot water bottle every night on my back.

Thanks xxx

 

[Crohn's 35]

Hi there Welcome to the forum. Pentasa is a very mild drug and Prednisone works but in higher doses. Everyone is different and I too want remission even after my 2nd surgery and 8 years later. Perhaps you could tell us more of what drugs you have been on. Remicade has helped many on here and Humira, but living on painkillers isnt the answer. Has surgery been mentioned? It is not just the "last resort" any more, quality of life is better. Just some suggestions. Careful what you eat, if you are narrowed it is painful for obstructions. Talk to your Gi, make him/her understand that you are sick of being in pain. All I can suggest. Hang in there, and good luck.

 

[missconstantpain]

Hi and thank you. Well when I was misdiagnosed with IBS I was given various anti-spasmodics none of which worked plus Codeine for the D and to try and kill pain but it just made me dizzy/sick so I came off it. I've also been on anti-depressants as they thought it was anxiety related which made me dizzy, sick and fat which made me more anxious. At the moment I'm just on a 6 week course of steroids initially and the Pentasa. I'm trying to find out what is the best way to eat but everyone seems to say conflicting things so I have no idea what to try as everythingn I eat tends to give me pain - high fibre, low fibre, tried having just fruit and veg, no fruit and veg, even water can bloat/cause pain. I'm a vegetarian and cheese and chocolate give me migraines and I don't mind having a limited diet if it really did work but I feel I've tried al the options. It's so frustrating as i'm sure you have experienced yourself. Thank you I will talk my concerns with my GI next month and explain that I'm not coping with the pain and see what he suggests.

 

[karim]

missconstantpain- I completely know what you mean by constant pain. Just yesterday I went to the ER because I was at the end of my rope. They treated me like I was a druggie just pill chasing...it was awful. So disheartening...I really hope you find something to manage your pain. Have you tried the lower-grade narcotics such as Lortab? These seem to work for me. They also help curb the D for some time so I'm not in the bathroom as much. In all actuallity, they work better than anything I've ever tried. Just got to be careful with all that...I told my GP they worked the best but because I've no diagnosis, they automatically assumed I'm just looking for drugs. It's a terrible attitude to receive when you feel this much pain everyday and are just looking for a solution.

Best of luck to you, and welcome. I have found this forum to be THE most helpful solution for me while going through this hard time.

Kari

 

[Cat-a-Tonic]

Welcome, Miss. I'm also a 30 year old female so we have something in common. I would definitely talk to your doctor if even water is causing you problems. And I wouldn't wait until next month, either - call his office and say you're not doing well and need to talk to the doctor now, that you can't wait another month. That's what I did when they tried to tell me I had to wait 3 months for my colonoscopy - I called the office in tears and said I need to have a sooner appointment. I was told by the receptionist that there were absolutely no openings, so I asked to speak to the nurse, who told me she could fit me in the following week. So it seems to help to speak with the nurse or the doctor directly. Good luck and I hope you get more answers soon!

 

[Entchen]

Welcome to the forum! I agree that discussing strategies for pain management with your doc is a good way to go. I'm also in the Age 30 Club (although only for another 3.5 weeks), and also diagnosed at 30.

 

[Astra]

Hi Miss
and welcome

sorry you're having such a bad time, I would have thought the Pred would have worked by now after 2 weeks, but depends on what dose you're on? In order for Pred to blitz any inflammation, it has to be quite high, 50 or 60mg for a month at least.
When I was in hospital in Jan, I was given 2 paracetamol and 2 codeine phosphate for the pain, and yes it can make you drowsy and dizzy, but kills D in it's tracks and is fab for pain, but I was given cyclizine for the sickly feeling and that worked too.
hope you get something sorted soon
lotsa luv
Joan xxx

 

[missconstantpain]

Thank you all for yuor words of comfort and understanding. I'm currently trying to lay off the dairy and eat plainer food and taking my medication and will talk to my GI next month when I see him if the pain has not gone by then.

 

[BLM]

Hey Missconstantpain, welcome! Im sorry to hear of your troubles, but your not alone. I know exactly what you mean when you say they treat you like a druggie....Ive dealt with it for many years. It totally sucks, the pain is awful. I take 9 mg of Entocort and 4000mg of Pentasa and its working. Occassionally I take percocet for serious pain....and for severe pain I take dilaudid....strong meds. I ususall only take that if Im about to go to the ER....its my last resort. I pray for you to get the answers you need. GOod Luck!!