Duodenum Crohn's and stuff

[shark with laser]

Hi there!

I am going to have my 25th birthday this month and living with crohn's 10 years so far still i feel like i need some advice how to manage this nonsense.

My story began when i was at high school. After stopped doing Kick-box i was about to try some other sport so i started playing handball. Couple of days after the first training i got sick (some throat inflammation, fever etc. treated with antibiotics) after the sickness was gone my stomach started to hurt. Days passed and it keeped being painful. Resuming the trainings my coach said something is still wrong with you. Yes. The pain was getting unbearable and occasionally i vomited (even in the middle of the trainings). i visited a bunch of doctors (a LOT of them) noone knew whats going on but at least they prescribed omeprazol which helped me a little (little less pain and no vomiting at all). After months passed i was getting more and more weak and pail and gained no weight at all even if my height was increasing and vomiting came back (only took 20mg/day and sometimes not regular). I was so weak i ended up in a hospital and i met a doctor who made blood tests, colonoscopy, gastroscopy etc. and "finally" he said i have duodenal crohns. I had blood transfusion (he figured out i was bleeding the whole time before (slooowly)) and i was treated with solu-medrol, ciprofloxacin, metronidazole, pantoprazol and pentasa. After 3-4 days in hospital thanks to the steroids/blood i felt GREAT. So quickly i got out from there and my GI prescribed 64 mg medrol and continued with the rest of the medicines. My symptoms were gone. I was gaining weight and started to work out regularly. That was a wonderful time. I was the strongest, biggest, toughest guy in my class. But as it has to be i had to quit the steroids and slowly my stomach started to hurt again. Time passed -> Pain, ulcers, bleeding -> steroids -> little relief. The whole cycle 2-3 times. Medrol was less effective each time.

While attending university - after a lot of miserable days - i started medrol again but unfortunately it stopped working. I became total resistive. A little less than 2 years ago i had serious bleeding. I had a meeting with friends and right after i've arrived i've told them i am not feeling OK. Next day i woke up and vomited huge volume of blood and there was blood in my poo as well. In the hospital i passed out couple of times going to the toilet or just trying to get on my feet (i was not able to walk even 4-5 meter without someone holding my hand). Somehow the doctor there managed to fix me up burning my veins in my gut and with some astringent medicine and blood transfusion of course. He redirected me to one of the best GI's around and suggested him that i am in a need of biological treatment. This GI examined me (gastroscopy, colonoscopy, ct scan with contrast material etc. etc.) and told me that i have two 8-10 cm long stricture in my jejunum along with my duodenum inflammation, but rejected my biological treatment (like the other doctors in the past) because my condition is not that bad right now and i am an atypical crohn patient. He said we should wait a little if we can handle this some other way.
Well, after i stopped drinking alcohol and coffee entirely i feel like i ll have no life-threatening bleeding again if i am lucky. I used to drink beer or some stuff but i had to figure out that even just a little worsen my condition badly.

Nowdays i am occasionally visiting my doctor because i know none of them can help me really. I've met a lot of doctors and had like 30+ gastroscopy in my entire life. The story is the same: my stomach hurts right under my chest 24/7. The only medicine which actually do something is pantoprazol. I cant live without it. I've tried imuran also in the past but if i am taking it i feel super dizzy. So much that i am not sure if i can grab a door handle which is right in front of me. The only thing that i cant complain about is my current weight, i am 190 cm tall with 95 kg.

My illness affected my life in every aspects. I have never had a relationship with any female. There were a couple of girls who were interested in me but i am just not able to maintain a relationship. I am now currently writing my thesis of masters's degree and really afraid of getting a job (my profession is electrical engineering and luckily i had received scholarship in most of my semesters due to my scholastic record). I am not in a good mood most of the time so i dont think i can get along with my future collegues plus working 8-10 hours a day with constant pain is just a nightmare. right now i am surviving not living every damn day. Well, one way or another i ll have to find something but i dont know how.
And right now i am feeling i am losing my friends because i am so jealous about what they can achieve in life and what i cant, on the other hand i dont want them to feel sorry for me. At all. I just hate it when they telling with their eyes 'oh poor boy'.

And whats more, working out (and swimming, wall climbing, spelunking) and trying to be fit even if it is soo painful caused me a rotator cuff tear in my right shoulder. So doing sports right now is a bit difficult. While not being able to do sports and only sitting in university or at home in front of the computer, i received spinal disc herniation also, funny eh? (I hope i am using the right expression for that)

Well thats my story i guess,
Oh, I am really looking forward to hear tips from others with upper tract involvement :smile:


I am not a native english speaker so please forgive me if i write something wrong

 

[Ali29]

Hi and welcome to the Forum. My disease is located in the small intestine with stomach involvement. I too am not a typical case and have tried many different meds. It is a constant struggle so I understand your feelings. It's hard but trying to find something positive to focus on in the middle of the disease can help.

My GI put me on a strict diet. Have you tried a food diary to see if anything flares you? It sounds like you have had a very rough time and does not sound like a mild case. Do you have any pain meds? I would suggest another opinion but looks like you have seen many GI's.

Hopefully someone will be along to offer some additional advice.

Good luck!!!

 

[valleysangel92]

Hello and welcome to the forum
I'm sorry to hear that you have had such a tough time and have had difficulty finding treatments that work for you.

However, there are options available to you. I know you've said you've tried imuran and it made you very dizzy, but the sister drug 6mp may be an option. It's what imuran is broken down into by the body and is usually better tolerated. Another option is another immunosuppressant called methotrexate which is available as a once a week pill or injection.

The other option is a biologic such as humira, which target specific parts of the immune system with the aim of stopping the abnormal response. I know you said that the doctors have said you aren't severe enough yet, but if immunosuppressants don't work for you then that gives an extra reason to push for biologics. Dont be afraid of requesting second, third, forth or even tenth opinions if you need to in order to get the right care. Whatever doctors say, crohns is a serious condition and I don't think it should ever be referred to as mild.

Other than medications, a specialist liquid diet called EEN may provide you some relief. The diet works by using specially formulated drinks such as ensure or modulen which contain all of your nutritional needs. The number of drinks needed per day is calculated based on your body weight and height and your daily calorie needs. The idea is that you drink only those drinks for a period of around 6-8 weeks which allows the gut to rest and heal. It's predominantly used in children but can be applied to adults in some circumstances. It might be worth chatting with your medical team about it if you feel you haven't got many options.

 

[Jmrogers4]

My son has Crohn's in his duodenum as well and he was on Azathioprine for quite a few years (He took it right before bed so he would sleep through any nausea). Biologics were always put on hold because "he wasn't that bad" He did not grow or gain weight for 3 years. He was diagnosed at 10 and is now 15. We finally started remicade/infliximab in January as we had tried nearly everything else. After his first couple of doses, his GI said I guess he really did need a biologic even though it appeared he did not.
He has gained 30 pounds and grown 3 inches since starting in January and is continuing to grow and has even started to work out. He finally looks and feels healthy. It has allowed him to be a normal teenage boy.
Can you get a 2nd opinion on biologics?

 

[shark with laser]

Thanks for the replies

Ali29:
Cant take pain meds. Taking NSAID drugs results ulcers and bleeding for me.
About the diet: I dont believe that diet has a huge impact on my condition. Every single food causes pain right after i eat. Sometimes i can eat a certain type of food like sausage,egg without an extra problem(except the pain) and there are days when it results in cramp,vomiting and so on. So i've already figured out what to eat with caution and what to avoid (like obviously tomato or pepper has a pretty bad effect on my ulcers ).

Jmrogers4,valleysangel92:
I dont know if i can push for humira. Actually i do fear from side effects and the depression after the treatment. I dont know if i can accept my fate again if i'd granted a year or two symptom free.

 

[valleysangel92]

There are pain meds that are ok with crohns, Tylenol for example, I use small amounts of codine or tramadol for severe pain. It's not recommended frequently but if the pain is severe then it's ok now and then.

You have every right to push for treatment. What are you currently taking?

 

[Jmrogers4]

I agree with valleysangel, keep pushing until you find what works. They are studying new things and meds all the time. I figure for however long a med works that just gives them more time to come up with better solutions.

 

[shark with laser]

currently taking 80mg pantoprazole each day, sometimes sucralfate, thats all.

 

[valleysangel92]

In that case I strongly advise getting back to your doctor and getting onto some form of crohns treatment, if they won't give you anything then keep looking until you find someone that will. No matter how mild they think things are now, untreated crohns isn't a good idea.

Are you willing to try another immunosuppressant to see if you tolerate that better at least? I know you had bad experiences with imuran but you might have better luck with something else.

If not then you really do need to push for a biologic. Leaving crohns untreated is far more risky than any of the medications and will eventually make you feel much worse, it's a ticking time bomb.

 

[shark with laser]

yeah. i dont know maybe i ll try again asking about humira. Actually i dont think that the doc will reconsider his recent decision but worth a try maybe i dont know.

BTW at some day he mentioned something about balloon dilatation which might help with the stricture. Maybe some of you know anything about this thing or have experience with this?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2398267/pdf/postmedj00034-0049.pdf

this article sounds good but the patients involved are just too few.

 

[shark with laser]

UPDATE:

I had gastroscopy today. My GI told me humira probably won't help me because my symptoms are likely caused by the scarring tissues not really the inflammation (there is a little but he said it is not the main reason). No ulcers but around my pylorus the tissue is highly inflexible. So he recommends surgery.

Probably thats why steroids dont help me aswell i was thinking if this is caused by resistence to the medicine but looks like the problem is different.

Anyone has any experience with this kind of surgery? He was talking about Billroth II but the surgeon should decide exactly what method do i need. I really dont know what should i expect after the surgery. I have no idea what life i can live what stuff should i do or avoid or anything. The pictures of this kind of surgery looks pretty weird. I am a bit depressed.

 

[Jmrogers4]

Sorry to hear that shark with laser but yes medicine wont fix scar tissue unfortunately. Hope surgery is the magic mix and brings many years of relief. Not sure about the surgery. I'm sure there are others that have experienced. You might want to have a look through the treatment/surgery threads or even post your question there.

 

[my little penguin]

Ds has crohns throughout including in the duodendum.
Biologics were the only thing other than steriods that helped
Plus EEN .
Hope the surgery helps .

 

[shark with laser]

update:

i've just arrived from the hospital. After the pre-surgery gastroscopy the doctors (GI's and surgeons) said sadly my affected are cant be removed that easy, because it is very close to the connection to the pancreas therefore if they decide to operate they have to remove at least partly my pancreas aswell, something like that i dont know that exactly but the essential idea is that the operation would cause much more serious problems. And due to that i have scarring tissues and not 'active' (only chronic?) inflammation they deciced not to operate me. What they did is the dilitation of the stricture with thicker scopes (i've spitted blood after that so i felt it is truly dilitating that area ) but i dont feel that it helps me at all. And they said medicines will not help me aswell (mentioned Imuran,steroids,biologics etc.) only pantoprazole so it seems i have to live with pain in the rest of my life.
i see zero options left for me.

 

[24601]

I'm really sorry that you're dealing with these particular problems. I know surgery to remove strictures in the duodenum is much more complicated and riskier. While every case is different and has to be assessed on an individual basis, surgeries are performed for strictures in the duodenum so perhaps another surgeon (and you would want a very experienced surgeon) would go ahead with surgery for you.

What I don't understand though is your doctors' reasoning that it's not worth trying other meds for you. Because they might just help these strictures - even if there is only a very small component of inflammation in these narrowings it could still make a difference to the pain they cause. Also and perhaps even more importantly since damage in the duodenum presents such difficulties and risks, why don't they want to do everything to prevent more stricturing in your duodenum (and throughout your GI tract)? To me it seems like that would mean trying different immunosuppressants and possibly biologics. I certainly think your disease sounds plenty severe enough to warrant this.

Again I'm so sorry that you're dealing with such pain - and may have to live with it for life. If there isn't anything they can do to treat the cause, then are your doctors not prepared to treat the pain?