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One thing after another...

First of all I would just like to thank this entire community for what it does as it has provided support and guidance which I could not find anywhere else. I have been lingering around the forum for a while and just feel I need to get something off my chest.

I am a 21 year old male from the UK. I have suffered with on and off stomach cramping since I was 18 years old with varying degrees of severity and longevity and I never visited the doctor for it because I am an idiot :tongue: From September - December these pains completely obliterated my appetite and I was only consuming around 1000 calories a day, resulting a much weight loss. At the beginning of February this year I visited the doctor at my university in Nottingham as I noticed what I can only describe as an elevated lower right quadrant of my abdomen. This was accompanied with very watery bowel movements and on a couple of occasions I had an intense stabbing pain which was localised to the LRQ. I went to the doctor expecting a diagnosis of appendicitis; to which he laughed off and told me to come back if things got worse.

Fast forward a month and things get worse. A large mass has developed in my LRQ and it looks like a cricket ball is sticking out of my stomach. I return to the doctors who has a feel around and orders me for an emergency CT scan. He thought it was a tumor and scared the hell out of me (cheers doc). I return to my home town in London and visit the ER for a scan which revealed a 10x9x10cm abscess around my appendix with the diagnosis being a ruptured appendix. An 18 day stay in hospital included a failed drain placement, a complicated initial surgery due to a blood clot resulting in 2 blood transfusions and a second surgery which finally placed the tube in successfully in order to drain the abscess. The abscess was successfully drained and the hole healed up, but a fistula connected to the terminal ileum then developed at the site of the surgery which currently discharges foul smelling fluid to this day (5-50ml a day, enterocutaneous fistula).

Doctor orders a colonoscopy to rule out IBD. The guy doing the procedure said my colon didn't look like crohn's, however there was scarring in my cecum (I assumed from where my appendix was that ruptured) and he took a biopsy. Biopsy result was 'Inconclusive'. Weeks past and I was dealing with the fistula with no signs of it healing on its own. Then in the middle of July I woke up one morning and my LRQ looked elevated again, not another abscess I prayed. A 3 day stay in hospital showed 7cm of my terminal ileum was inflamed. A couple of months ago would have been acceptable due to the massive abscess in that area caused by the ruptured appendix, but my doc now suspects crohn's as he would have expected the inflammation from the abscess to have settled down by now.

Fast forward to yesterday. I meet with my new gastro consultant for the first time who specialises in IBD to discuss me starting remicade. In the meeting he emails a colleague to find out some blood results for tests I had to do to see if I was suitable for remicade. She instantly mails him back and said my tuberculosis test was positive. What the fuck? He says its probably a false positive or whatever, but annoyingly this was going to delay the start of my remicade treatment as I have to do further tests :ybatty:

I don't really know what the point of this post is. I just need to communicate what is going on with me to someone else. I have had to drop out of my final year of university because of this, and living with a fistula in my abdomen is a nuisance and very embarrassing. I haven't told anyone about whats going on with me apart from my mother. It would be interesting to hear anyone else with a similar experience to mine as at the moment I feel very alone.

I thank anyone who took the time to read this, just typing these words down has already made me feel a little better.
im so sorry. i hope things start to look up. this crohns shit is annoying, and im still trying to learn to live with it and accept it. i hope you feel better soon.


Staff member
Hello there, welcome to the forum. I'm sorry that you've had such a rotten time :(. I'm really glad you've found us though, this forum is full of really supportive, friendly members who have lots of hints, tips, support and advice to share with you.

I'm curious that you haven't been given a course of steroids, have they said why? Normally this is the first port of call to deal with inflammation and although they can't close fistulas they work very well with inflammation itself. I would be very surprised if you had TB and it hadn't been picked up when you were in hospital all that time, so would assume this was a false positive, but unfortunately it does mean they have to be very careful as it can be dangerous to give remicade to someone who has an infection. When are you getting your other tests?

Some people find that their symptoms are triggered by certain foods, so keeping a food diary of what you eat and how you feel after might help you. If your getting stomach pains you are entitled to ask for pain relief, but heat packs and hot baths can also help a lot. Your hospital should also have an IBD nurse that can help answer questions about how to manage symptoms and cope with the condition in general.

I'm glad you felt you could open up, sometimes just getting these things out there can make a huge different mentally. Its a hard thing to talk about sometimes because the symptoms can be horrid and very embarrassing when people don't understand the disease, and sometimes people just don't get what its like. Here though, we're all in it together, none of us will judge you or think any less of you for what you tell us. We will always do our best to support and advise you and if you just need to rant and get it off your chest then that's fine by us.
Its easy to feel alone when there seems to be no one around that understands what you're dealing with, but you aren't alone, we do understand and we're here for you whenever you need us.


Well-known member
Hello and welcome to the forum.Although I can't give you any advice,I know there are lots of others on the forum who have been through similar trauma,and they will no doubt give you lots of support.I'm glad you found us,so please vent when ever you feel the need.Nothing is taboo on here,absolutely nothing that relates to Bowel probs.I'm glad you have confided in your Mother as you also need personal support.You've had a rough time,but things will get sorted when your Medical support team gets their finger out.(no pun intended)Please keep us up to date,as your experiences can also help others.Best Wishes.
Hello and thank you for the replies.

I visited a respiratory doctor yesterday and she believes I have latent tuberculosis which basically means I have the bacteria in my body but it isn't active - my immune system is keeping it in check. They believe around a third of the worlds population has latent TB. Anyway I have started a 3 month course of antibiotics called Rifinah which is a combination of Rifampicin and Isoniazid and it makes you pee a funky colour. This will hopefully eradicate the TB i have, and the doctor said I may even be able to start Remicade in conjunction with this in a months time, so with any luck my treatment has only been delayed by a month.

ValleysAngel - I believe my gastro is taking the top-down approach due to the fact I have a fistula that has no signs of closing on its own. Besides surgery, Remicade is probably the only thing that has a chance of closing this thing. I can live with stomach cramps, i have been for years. But this stupid thing is really getting me down and I really want it to go away.

My only concern is taking the biological therapy at such an early stage as I have read about the body becoming resistant to it after you stop and start again. Say the Remicade works now, and I get in to remission for however long - what am I supposed to do when the Crohns comes back and the biological therapy is no longer effective? As far as I know it is only 7 cm of my terminal ileum that is currently inflamed. I would have thought a simple bowel resection removing that segment would likely put me in to remission and at the same time leave the biological therapy option open for a day when my Crohns isn't so localised.

Another thing I have thought about is the possibility of intestinal tuberculosis. I have heard that it can mimic the symptoms of Crohns disease and it makes me wonder if I could possibly be suffering from that, given that I tested positive for TB and my lungs are in fine shape. The main symptom for IBD sufferers seems to be multiple bowel movements a day. However, I only have 1 a day - is it odd to have Crohn's and have relatively normal bowel movements?

These are probably things I should be asking my gastro but I won't be seeing him for another month and I just have so many questions :ylol2:


Staff member
Steroids can still be used as a part of the top-down approach as they can 'blast' the disease before using a more potent medication to initiate remission.

I know it may seem silly to take all these strong, potentially risky medications when a ''simple'' operation would take the problem away. However, surgery is a risky business, intestinal surgery carries a big infection risk, you can bleed internally and you can end up with post op complications which include ruptures. Also, once they have removed that section of bowel you will never get it back, meaning theres less they can take away in the future if you have a more severe flare up that medication wont treat. Its also more difficult to create a strong join when there is a lot of inflammation. If the inflammation has been treated and calmed, it makes it far easier for the surgeon to join the two healthy ends together.
There are all sorts of complications that can and do arise from having surgery too soon or too often. It can create more scarring, fistulas can form and people can develop short bowel syndrome meaning they dont absorb nutrients and they can end up with constant D.
For these reasons it is always best to try medications first whenever it is possible and use surgery as a last resort not a first choice.

Although it is more common for IBD patients to have more bowel movements than others, it is not diagnostic criteria. People can have crohns/UC and still have normal bowel movements, it depends on where the inflammation is in the digestive tract, how severe the inflammation is and other factors like stress and lifestyle. Some patients with IBD are actually the opposite and struggle with constipation.

Its good to ask questions, that's what we're here for, the more you know about your illness the better you can fight it.
I am sorry to hear you are having a rough time. I can relate. I have been diagnosed with CD for 10 years and am feeling the worst I ever have. Remicade makes me achy, Imuran makes me vomit, and prednisone makes me not sleep. I feel like a hot mess everyday and my family and friends are done hearing about it. I am a girl, I need to talk through things. I spend my life taking care of others who are ill, but have no one to take care of me. I am not sure how one is supposed to respond in these forums as I am just using for the first time. I apologize for venting.


Well-known member
Don't apologise,you did just fine.That's what we're hear for,to listen,sympathise,support and advise,where we can.Hope today's a GOOD day for you.
Hi, I am a Crohn's patient too since 1996. Three years ago I started anti-TNF treatment (humira) but after a few months I got TB. I was in induced coma for almost a month and it was trully a very bad experience. Anyway, the medicine I took for TB appeared to be beneficial for Crohn's. For the one and half year I was in that treatment I had almost not symptoms at all. But almost a week after I stopped the treatment I had again diarrheas. I took certain different antibiotics my doctor suggested me but I was keep having diarrheas and losing weight. Then I decided to start again Rifinah (an antibiotic for TB) and within two days the symptoms disappeared. Now I am taking no treatment at all for the Crohn's (after my TB experience I do not want to start anti-TNF treatment again in my life) and when I am having diarrheas I am taking some Rifinah for a few days. My doctor tells me that I am not doing well since Rifinah is not a proper treatment for Crohn's. But I prefer to take some Rifinah from time to time than to start again medicine that they almost killed me.


Staff member
Nozick you need to be very careful.

I know the medications can be scary and the side effects are sometimes nasty, but you do have other medication options such as immunosuppressants, or another type of biologic. If you are in the us you could be eligible for a new type of treatment, the link for which is in my signature.

Please be aware that not treating crohns with the proper medications is very risky, you might feel well but there could be all sorts of damage internally including the start of an obstruction which could lead to a perforation.. I am not saying this to scare you, I'm saying it so you are aware of the potential consequences.

At the very least, please make sure you are receiving good follow up and monitoring to catch it quickly if things start to deteriorate.
Well, I on the other hand think you may be on to something for yourself. If you see more than once or twice that there is a direct connection between TB meds and your Crohns, I would push for a second opinion with an IBD expert; the best you can find and afford.
Really, it could be that your condition needs further investigation.

1. If TB meds are helping. maybe your symptoms are not from the Crohns ?
2. If the symptoms are from Crohns, maybe your disease somehow respond to TB meds and maybe in your specific case this could be used as alternative treatment to the standard protocol

We need to remember that while the standard treatment for Crohns is statistically proven, it is far from covering the whole Crohns population.
In your case, where you already had a bad experience with the standard protocol of tnf-a blockers, and on the other hand found something else that
helps you much, I think it wold be crazy to leave it alone.
Dont give it up ! Find the doctor who will be willing to get to the bottom of it
and understand the bigger picture of your case.

Feel well dear.